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Location: BlogsYour Kidney Blog - Speak your mind    
Posted by: admin Sunday, 5 July 2009
What's happening in your 'kidney' world. Do you have something to say about your kidney community - speak up here and be heard.

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Comments (186)  
By TT on Tuesday, 17 December 2013
Re: Bloggers from our 'kidney' community
I have read the posts on this Kidney Blog - I'm impressed with the stories here and the struggle that many Australians never know of. You are not alone. Reach out to someone who is walking your path and knows the realities.

By Teas Fox on Saturday, 6 July 2013
Re: Bloggers from our 'kidney' community
Thank you for sharing your story Colleen - many will gain strength and be more at peace knowing your success. Your baby son would bring you so much joy and fulfilment. You are right - we all must take better care of ourselves every day to live in the best health possible. Even with a chronic health problem it is possible to enjoy the special beauties around us.

By colleen Mabasa on Saturday, 6 July 2013
Re: Bloggers from our 'kidney' community
when I was diagnosed with renal failure I actually thought I was going to die. It took me a while before I accepted my condition. I had a lot of support from my husband and family so it became easier. I have been dialysising for 3 years now and in that three years I conceived while on dialysis. I was worried that this pregnancy will definitely kill me. My doctor adviced me to dialysis every day for four hours to try to keep my values balanced. I dialysised every day until my son was born in 2012 march 28. He was born prematurely but I prayed every day that God will watch over him and help him grow. God answered me... My son is one year and three months old now and he is a beautiful boy full of life and perfectly healthy. This made me see that kidney failure is not the end of life. U can still live a perfectly normal life but most importantly take good care of urself in order to live longer

By Deanne on Tuesday, 2 April 2013
Re: Bloggers from our 'kidney' community
Hi,

This post is directed to Iris who posted on 25 Oct 2012, not sure if she will see it but just wanted to say my brother who has IGA Nephropathy suffered the same stomach cramps as you after a glass of beer. He is not on dialysis (on alot of medication to try and help) so perhaps the cramps are not related to your dislysis but to do with IGA Nephropathy.

Not sure you will see this but just thought I needed to comment. He is also very frustrated as it is very isolating for a 34yr old male unable to have at least 1 beer with his friends once in a while (the very rare time he feels able to go out with his friends).

Thanks and good luck.

By Suzee Bouquet on Wednesday, 27 March 2013
Re: Bloggers from our 'kidney' community
I have just began peritoneal dialysis i would like to know if there are other patients that lift weights or do some other form of weightlifting/bodypump classes and are dilaysing is this form of exercise recommended or should be avoided especially with a fitsula?
REPLY FROM HOME DIALYSIS MANAGER
Hi Suzee - there are no restrictions regarding fistulas, except avoiding getting the fistula bumped.
However there are restrictions with Peritoneal Dialysis, in that exercise the puts pressure on the abdominal muscles such as heavy lifting can lead to increased risks of Hernias. This does not mean no exercise in this area but it should be controlled.
Suzee, you can either chat with your renal health team or an experienced exercise physiologist, who could recommend appropriate exercise. I’d be strongly encouraging Suzee to consult with her Renal Care Team to see what weight restrictions were appropriate and suitable for her. Without knowing your medical history and current physical health status, it wouldn’t be safe for us to give individual advice. Find out more at our Home Dialysis site -
http://homedialysis.org.au/healthy-lifestyle/exercise-and-sport/

Here are a couple of web links that we suggest:
www.davita.com/kidney-disease/dialysis/life-on-dialysis/indoor-exercises-for-people-on-dialysis/e/5297 AND
http://forums.homedialysis.org/threads/2009-Weight-restrictions-with-PD

By Irene Mewburn on Sunday, 18 November 2012
Re: Bloggers from our 'kidney' community
Update since my last blog in august 2011.
I've been on Peritoneal Dialysis for a year and it has made a BIG difference to me.
It does have it's limitations tho, you can't go on holidays easily on short notice.
But after some research we, caring husband and I, whose offered me his kidney, have agreed to go and have a Transplant subject to Blood Gp and Tissue tests being compatible. In November 2011 we attended a transplant seminar and went: "Oh My, should we?" It hasn't been an easy decision!

By Ainslie Bolton on Tuesday, 13 November 2012
Re: Bloggers from our 'kidney' community
Hi,
Your concerns regarding your sons Taekwondo are certainly valid, and we do suggest that anyone playing contact sport with a single kidney should follow up with a doctor or physiotherapist for specific advice. Of course your health professionals may suggest that they would prefer it if he did not play contact sport because of the 'risk' involved to his right kidney. In reality though for many growing young boys this will not be an option, as I am sure he loves his involvement in this sport.
If this is the case, then we do suggest that you have a Kidney Guard specifically made and fitted for him, so that he receives maximum protection. Just to note that he will require to be refitted with his Kidney Guard as he grows.
The next question no doubt is where to get a Kidney Guard?
It is advisable to speak to your Nephrologist, Physiotherapist or Occupational Therapist for local contacts for Kidney Guards.
Another alternative is to contact a Prosthesis and Orthotics company and ask if they are able to custom make and fit Kidney Guards. In all cases make sure you discuss all costs involved and required referrals. Kidney Health Australia does not refer to specific practices, so we encourage that you research thoroughly.
The following web link will also provide some further information:
http://www.geelongorthotics.com.au/news-next.aspx?pid=14
Please feel free to contact us again for any further questions!
Hope this helps :)
KHIS Angel

By BP on Thursday, 8 November 2012
Re: Bloggers from our 'kidney' community
My son is now 11 years old. He has a multicystical left kidney ( meaning only the right one is functioning ) my concern is that he is in taekwondo and had been for a couple of years now, but now that its getting more intense in taekwondo I want to know if its still safe having my participate in this activity. what are your thoughts?

By Sue on Saturday, 3 November 2012
Re: Bloggers from our 'kidney' community
Hi everyone. Certainly interesting reading and enlightening too. I have had a transplant (in 2010) and I am feeling really well. I look after myself with regular exercise - walk and row machine - and eat organic food. I hope this is keeping me healthy in a sort of way as my body still has to deal with the awful drugs to suppress my immune system. I feel very happy that I have been lucky enough to have a donor (my husband) who could give me a kidney but now I worry if I am taking unnecessry drugs. I want to stop Prednosoline (corticosteroid) which takes a heavy toll on bones. Has anyone information on this? A friend who had a transplant at Monash does not take this drug but my doctor at the Austin says I will have to take it for ever. Can anyone tell me more? Many thanks. Sue

By Mina on Friday, 2 November 2012
Re: Bloggers from our 'kidney' community
Re potassium. I soak carrots potatoes and green veges in water for 2 hrs prior to eating or cooking. My k levels have remained stable For e last seven years since being diagnosed with kidney disease

By Teresa Taylor on Friday, 26 October 2012
Re: Bloggers from our 'kidney' community
Hi Iris - thank you for your interesting blog. You did well, even though it was your first time.. smile.
Re your query - our staff are not aware of why this should occur. It is unusual. We suggest that you talk to your dialysis nurse and / or your nephrologist about this problem. You could also contact the company producing the dialysate.
If an alcoholic drink is causing stomach cramps, it suggests your body does not like it - could be preservatives or content in the drink. Best to avoid it until you find out the cause.
If you would like some information on IgA Nephropathy, you are welcome to contact our Kidney Health Information Service (KHIS line) on 1800 4 543639
We hope you can find a solution to your problem.
Cheers - you web angels

By Iris on Thursday, 25 October 2012
Re: Bloggers from our 'kidney' community
Hi Everyone!
It's my first venture into this site, so forgive me if my question seems dense. I got diagnosed w/ IGA Nephropathy in March. Everything just happened so quickly. One minute I was getting a blood & urine test & the next week, I got told that both my kidneys had gone down to less than 10% function. I'm still getting my head around all this... I thought I just had a REALLY BAD FLU bug or chronic fatigue... I never thought I would lose vital organs....

Anyway, it is what it is... I'm sure I'm not the only 33 year old, health freak who got struck down with something similar.

Currently I'm using Physioneal dialysites for CAPD.... However, I've noticed on a couple of social ocassions that having an alcoholic beverage (a glass) seems to be causing really bad stomach cramps..... Something I've not experienced with the normal glucose dialysites.
I've GOOGLED this problem but haven't come up with anything. Is there some kind of chemical mixture that can make this stop? For the record, I'm not a big drinker anyway, but once every 5 months, there's always an ocassion for a glass of wine which I would like to enjoy w/o reeling in pain 10 minutes later....

Any suggestions would be appreciated.

Thanks!
Iris

By Marg on Sunday, 7 October 2012
Nephroptosis
My daughter has been diagnosed with right renal nephroptosis. She has been suffereing from nausea and right flank pain for more almost 2 years and is unable to work because of this illness. She has a surgeon looking at this and deciding if surgery is appropriate (nephropexy) but I am wondering does anyone else have this condition and how and where are they being treated. It seems to be rare.

By Sharon H on Monday, 3 September 2012
Re: Bloggers from our 'kidney' community
I was diagnosed with glomerulonephritis about 5 years ago, and was told that I was prpbably MIS-diagnosed when I first presented with high blood pressure at age 22 (I am now 53 years old). Recently I have been suffering from muscle cramps, usually in my legs. It happens at night, and when I excercise. I have just started on Crampeze, which contains approx 75gms magnesium: does anyone know if this is safe? I've been reading that if you have impaired kidney function, your body can't flush out the excess magnesium, causing toxicity.

By Kazz on Friday, 31 August 2012
Re: Bloggers from our 'kidney' community
In dec I had gone to my doc due to pain I thought was maybe caused by an ulcer..he sent me for a ct scan and then found out I had abnormality with my left kidney...they then decided they had to operate just laparoscopically ..I was ok with it because I learned people can live quite a normal life with 1 kidney... Anyhow i was the first person to go in on feb 15 6:15am... They gave me 4 or 5 needles in my back cuz the anestesialogist kept missing then they gave me an epidural and the gas mask too....when I woke up I was in the worst pain of my life.. it was my legs ... They were in soooo much constant pain... Like numbing pins and needles.. Like I had very little control over them.. The nurses thought I was crazy and the doctors were baffled..they said they never seen this before.. I was in the hospital for about 2 weeks then I just wanted to be home so in a wheelchair I went... I was upset it was so uncomfortable I mean I went In there walking fine and now I'm in a wheelchair huh????? They later found out that there was something wrong with my c5 after all kinds of tests but they still don't know the cause..Its been about 6 months now ...has anyone else ever had this happen ??

By KHA Web Editor on Wednesday, 1 August 2012
Re: Bloggers from our 'kidney' community
Hi Feyang

If you go to this website which Sharon Ricardo's research supports, you will find regularly updated information and even contact details for further information on this subject
www.stemcellcentre.edu.au

THE FUTURE - STEM CELL TREATMENT?
Latest news on Stem Cell Treatment from Dr Sharon Ricardo of Australian Stem Cell Centre
Her advice is "currently the only proven treatments offered involving stem cells are for the treatment of some blood and auto immune diseases. Treatments involve either bone marrow or cord blood, such as a bone marrow transplant for leukaemia. Other stem cell based therapies are still in research phase or in clinical trials. Clinical trials are essential to ensure treatment is proven, safe and effective, before widespread use in patients. Many treatments offered by overseas organisations do not appear to have undergone any clinical trial process and therefore we cannot know if they are safe or if they even work."

By fayeang on Wednesday, 1 August 2012
stemcell for my 3 year old son
hi, is there anyone who can help me regarding stemcell? hows the status of dr.sharon ricardo's research last year? needed a hospital that has a kidney stemcell procedure, suggestions anyone?

By Pauline on Wednesday, 11 July 2012
Re: BIs there loggers from our 'kidney' community
Hi I am Pauline and this is the first time I have been on this site. I was diagnosed with kidney disease about 20 years ago and am currently on the overnight sleep safe machine, which has given me back about three quarters of my life. However I had a failed transplant in 2010 after also being put onto numerous immunosuppressants. The immunopsuppressants have now caused other problems consequently I have been told I cannot have another transplant. Is there anyone out there who has been in a similar situation?

By Sandy on Wednesday, 20 June 2012
Re: Bloggers from our 'kidney' community
I took the step to organise to go to a specialist yesterday as I was sick of waiting for the Public Hospital appointment...I hoped cysts on my Kidney that cause infections...I was hoping she had a solution and I wouldn't have to continue to take antibiotics every day that things would be sorted, though no I paid $150 for her to tell me just continue with what you are doing and she yawned for most of the consultation..I'm looking at natural ways to try and reduce the cysts ...any suggestions?

By Gordon on Wednesday, 20 June 2012
Re: Bloggers from our 'kidney' community
My wife has bad kidneys due to high calcium deposits from taking calcium pills and VitD due to her losing 3 of her parathyroids. Now, after 12 years her remaining parathyroid is producing enough for her body. So she has been taking the calcium for nothing and this is what has caused the kidney damage. What I want to do is be prepared so I would like to know how much a dialysis machine would cost. I don´t want to sound loke an old skinflint but I see a company in America are selling refurbished models.
I am very impressed after reading some of your blogs how positive you all are and how well you are all doing now
Any help or info would be good and hope you are all having a normal life.
best regards
Gordon

By the renal kid on Friday, 8 June 2012
Re: Bloggers from our 'kidney' community
This disease (end stage renal failure) is a little devil, it robs you of your independence, BUT you can get it back, after travelling with PD for seven years and then having to go to Home Haemo, we have found that we can book ahead to GUD's, just like a hotel, we are going up the coast of NSW to Moruya for three weeks. We are still getting used to H/H as it is quite challenging, especially the machine which in our case keeps having glitches, but we persevere and I am definitely feeling much stronger and healthier.

By Lan on Tuesday, 5 June 2012
Re: Bloggers from our 'kidney' community
Hi. This is the first time that I have posted on a site like this. My daughter was diagnosed with CKD stage 4 in September, she is 6. It has been a rollercoaster of emotions since we have found out. I am feeling more ready now to share our story and to meet other people going through similar things. People mean well but many do not understand the journey that we are facing. It was unfathomable to me either for a long time but I am slowly starting to get my head around everything, - We are lucky that our family and friends have been amazing and so supportive. As has our peadiatic Nephrologist at the Childrens Hospital. and the extended team of dieticians, nurses and various other health professionals that we have encountered.

By KHA web angel on Monday, 4 June 2012
Re: Bloggers from our 'kidney' community
Hi Claire -

Thank you for your detailed query. However, on this blog we are unable to provide kidney and urinary health information for individuals over the web. You should trust in the advice that your health professionals who are treating you and of course their recommended treatment. These health professionals are fully aware of your extended health picture, so are best positioned to offer you the correct advice.

If you wanted to check out the use of botox in urinary problems, you could refer to this information, published as evidence based research
www.medicalnewstoday.com/articles/233292.php

Hope this helps a little - cheers KHA web angel.

By claire on Saturday, 2 June 2012
Re: Bloggers from our 'kidney' community
Hi, i am a 24 year old patient with spinal damage many years ago and keep taking medicine to avoid leakage of urine. however, the medicines such as destrusitol and other medicines didn't work this few years and keep leakage. During the Urodynamics, it found out my bladder is overactive and reflux occur and urine reflux to one kidney. Then i have carried the deflux injection this year. Just after the injection, the leakage occur more frequently from before the injection is maximum one time to maximum 3 times each night. I guess it's working because when reflux less occur, the urine leakage instead and so more frequent of leakage. One month after the injection, personally i feel the leakage is less serious maybe due to my adaption of knowing the leakage habit or other reasons but still more frequent than before. At this time, i have the taken the next Urodynamics, it found out the injection didn't improve the situation, but even more worse. Before the injection, my bladder can maximum store 190ml before reflux, but now it is 150ml. I am so worried, as doctor mention the worse of the injection is kept as the same situation, but now i found it worsen. If this injection didn't work, the plan will be the injection of botox to try to make the bladder less active. I am worried about if my bladder will store even less than 150ml next time. However, this is the only method to me before carry out the irreversible surgical operation, Bladder Augmentation. Can u answer why my case even worse after deflux injection, would u recommend me to have the botox next time? will there has a possibility of the maximum amount of my bladder carry even reduced? Or do you have any suggestion and updated patient experience in handling such problem? Any other medicine can help? If i try to avoid my bladder to reach 150ml (even it is difficult), can this be a method for me not to have the Botox injection and Bladder Augmentation?

By Teresa Taylor on Monday, 14 May 2012
Re: Bloggers from our 'kidney' community
Hi Yvette and Kath - there is lots of information on travel on dialysis that will help you organise this on our webpage

Dialysis and Travel www.kidney.org.au/ForPatients/DialysisandTravel/tabid/608/Default.aspx

Keep us updated on what you finally book, if you go ahead with plans. Others would love to know the quality of care and where you have been as it helps them when planning.

By Kath - Clinical Dialysis Nurse on Saturday, 12 May 2012
Re: Bloggers from our 'kidney' community
Hi Yvette,

There are organised dialysis holidays and cruises in australia and surrounds and overseas that are quite reasonably priced where everything is organised for you.

By Teresa Taylor on Monday, 7 May 2012
Re: Bloggers from our 'kidney' community
Hi Eileen - thank you for sharing your thoughts on our blog. We can supply a more detailed answer to your queries if you call our Kidney Health Information Service (KHIS line) on 1800 4 543 639. You may also email the Health Manager who runs this service at info@kidney.org.au but be sure to include details on your age, other health problems etc.

By eileen on Friday, 4 May 2012
Re: Bloggers from our 'kidney' community
i was diagnosed 2 years ago with fsgs. i am on 4 mg of tacrolimus once a day. i have pain in my back most days. i am having eye problems, they are watery and itchy sometimes dry and very sore. i was wandering if this is a result of having fsgs or is this a different problem. and what things should i look out for with having this disease. is there a chance if i keep up with me meds that i will never need dialysis or a transplant?

By Teresa Taylor on Tuesday, 24 April 2012
Re: Bloggers from our 'kidney' community
Hi Kumar - your son may have some specific kidney problem with his single kidney. You can live quite well with one kidney, but this would of course depend on the health of the single kidney. If your son is in pain you must take him to see a doctor - in Australia, you would see a GP first, who may refer you to see a nephrologist if he feels the pain is related to the single kidney.

You do not mention if you are in Australia - I am assuming you are. The pain your son has may be related to some other health condiiton. BUT you must take him to a doctor or health clinic to find out what is causing the pain, as soon as possible.

If you are born with one kidney or lose a kidney, your remaining kidney gets bigger and heavier and adjusts to provide adequate kidney function.

One of our Kidney Health Australia Fact Sheets provides a lot of information on this subject - 'Life with a single kidney' and can be found on this webpage www.kidney.org.au/ForPatients/HealthFactSheets/tabid/609/Default.aspx

By Teresa Taylor on Wednesday, 11 April 2012
Re: Bloggers from our 'kidney' community
Hi Yvette

Home haemo is possible on the Gold Coast and you would be great for Nocturnal Dialysis.

I am pleased you are going to finish your studies. You can do Home Dialysis in a rental, but your unit may prefer if you are not moving regularly.

Ask your doctor if you can talk to the local Home Haemo training team.

It will all work out and don't forget Peritoneal Dialysis can be an option at the beginning with Home Haemo later, when your life is settled.

Good luck - warm regards from Debbie Fortnum

PS. There is a Home Dialysis Kidney Blog - in this section. You may be interested in reading the posts there.
www.kidney.org.au/KidneyDisease/KidneyBlog/tabid/143/EntryID/3/Default.aspx

By Yvette on Monday, 9 April 2012
Re: Bloggers from our 'kidney' community
Thank you Debbie for your helpful advice. My study buddy at Tafe has also suggested i continue with study....in fact he is refusing to let me stop now as we're almost 2/3 the way through.

Regards to travel....Australia is easier to see on dialysis but overseas very difficult.

I guess one can't have everything.

One other question: I live on the Gold Coast and is Home Hemo available here.
I'm really keen to do Nocturnal Hemo. Another problem is I live with my sister (rented apartment) and have to move out soon...it will be financially difficult for me to rent on my own but then have the issue of installing a dialysis machine in my new abode.
I will be applying to Dept of Housing for a unit to give me a secure home but the wait may be many years.
Any advice out there....actually I dont even know what I'm asking anymore.

By Teresa Taylor on Wednesday, 4 April 2012
Re: Bloggers from our 'kidney' community
Hi Yvette - The ultimate decision is your choice but can I offer a few words that may help you to make the decision.

As you have been diagnosed, travel insurance is no easier to get before dialysis than on dialysis so that can be taken out of your decision making.

If in the future you get a transplant kidney travel will be the same as now. You will find it easier to do your E.E.N. training before dialysis and if you really want that dream then I would try to finish that course. You may appreciate the work options you will have.

If you choose to travel now sort insurance first. Then pick your countries carefully in case you get sick overseas. Remember there are some great places in Aussie to see, on or off dialysis and maybe that is the safer and cheaper option for now.

Good luck and warm regards - Debbie Fortnum, Home Dialysis Project Manager

By Yvette on Tuesday, 3 April 2012
Re: Bloggers from our 'kidney' community
Hi everyone, I am a 46 yr old mother of four grown children and happily separated for 3 yrs. I was dx with polycycstic kidney disease Sept 2000. I am now in stage 5 and my Neph has said i will need dialysis in 12 months time. This has put me in a spin even though it was expected eventually. I have been studying Nursing (EEN)and now feel I should defer and do some overseas travel before the big D. I realize one can travel overseas on dialysis however from what I've read it may be difficult to get travel health insurance and the cost of non reciprical countries dialysis chairs would be enormous not to mention the ridiculous amount of planning involved. Also, I feel travelling alone would be difficult on dialysis. Am i being sensible or am i just reacting in a urgent response to the news of 12 months countdown to dialysis?
BTW i don't have spare cash lying around...I'm on a disability pension (I also have bipolar disorder) and would be accessing some of my super under financial hardship in order to afford the travel.

By Viks on Friday, 2 March 2012
Childhood MCD
My 3 yrs son has been diagonised with MCD about 6 months ago. Since then he is on Prednisone. Initially he was on 40 mg/day dosage for 3 weeks and then reduced to 30 mg once in 2 days but after 3 weeks it relapsed and then Dr put him back on 40 mg/day dosage with gradually decreasing the dosage like 5 mg in every 2-3 weeks.
After bringing it down to 10 mg/day, it seems that his Albumin/Creatinine ratio is getting on higher side every week..I just want to hear from other parents who has suffered with same. What was recommended by your Dr? were ur kid was kept on same Prednisone or some other tests on Kidney like biopsy was suggested?
Is there any infection which causes this..plz share ur experience...
thanks

By Emma on Sunday, 12 February 2012
Re: Bloggers from our 'kidney' community
Who has had stem cell therapy?... That's the information that interests me....

By Amanda on Wednesday, 1 February 2012
Re: Bloggers from our 'kidney' community
Hi,
I was born with only a right kidney and have lived the last 22 of my 29 years with chronic kidney disease. I felt compelled to write a comment in this blog because having just found it, I feel a huge sense of relief knowing that I am not alone. Although I am currently stage 3( and therefore probably a lot better off than most) for a long time I have felt very scared and unsure about my condition and what my future holds. Reading through your comments has made me realise that there is hope and a lot of support out there. Instead of being scared about what is ahead, I am now inspired and keen to learn more and take control of my kidney's health!! Thank you to you all, and thank you to Kidney Health Australia for helping people like me understand that we are not on our own!! (PS If anyone has any advice on kidney-friendly meals that are Potassium reduced, I would love to hear about it!!)
Amanda - Brisbane

By Cheryl on Monday, 23 January 2012
Re: Bloggers from our 'kidney' community
Hi Jodie,
I had chemo when my kidney disease was aggressive. All went well and only a few sessions were needed. This gave me a few more years before my kidneys eventually failed. I now have a successful transplant

By Beth Anne on Tuesday, 10 January 2012
Re: Bloggers from our 'kidney' community
I agree with Kidney Health Australia and Renal Dietitians that food labeling should be mandatory. Many of us need potassium content identified on our packaged foods. Doesn't potassium also affect symptoms of Fibromyalgia. There are just so many reasons for these ingredients to be identified and labeled. I hope those who can make a difference continue to work on this.

By Melanie R on Tuesday, 3 January 2012
Re: Bloggers from our 'kidney' community
Hi my name is Melanie and my mum has been diganoised with diabetes type 2 for many years now. Over the last year I moved back in with my mum due to my own personal reasons. It was like I had steped back in time, after moving out at 19 and moving back in at 27. Recently mum has been going to see a Kidney Specalist for her Kidney's and she was told that even though she is quite a big lady and drinks diet coke all day that she doesn't need to lose weight or do exercise because it's just a matter of time before her kidney's give way and fail. It's hard because she thinks she's fine and hasn't even bothered to try and cut dwn on the diet coke and have water instead. I am just wondering how do I approach her about a plan to be prepared for this and what services I can access before her kidney's do fail? I would really appreciate any advice on where to go in the local community for help. Thank you

By Kayla on Sunday, 1 January 2012
Re: Bloggers from our 'kidney' community
Hi everyone my name is Kayla and 3.5 months ago I gaive birth to my first baby, a boy names Nate. He was a healthy 9pd 6.5 oz and is beautiful. However, Nate was born with only one kidney, the right one. I am wondering if anyone has a child with this congenital abnormality and what impact this will have on Nate as he gets older. Our doctor says that he is perfectly healthy but i am hoping to find out as much information on this as possible. I would love to hear from anyone who has a child or family member with this condition.

By KHA Health Team on Monday, 19 December 2011
Re: Bloggers from our 'kidney' community
As your individual health profile is complex, we are certain that your nephrologist is advising you the best treatment. However, you could seek the opinion of a second nephrologist. We would also recommend that you seek further information on the treatment recommended from the nurse or staff at your current nephrologist's office. You will need the name of the medicine's and information usually provided with the medication. We are certain they will provide this on your request. Especially as you did not understand the treatment offered and why it is relevant. It is widely used as treatment for certain conditions where the immune system is behaving erratically and attacking the kidney.

By Jodie on Friday, 16 December 2011
Chronic Kidney Disease and Chemo
Hi - my renal specialist wants me to start a program of chemo to treat my kidney disease as has come quite aggressive - my chemist has stated it is a common form of kidney disease treatment now yet I have not previously heard of it - can anyone tell me anymore about it ?

By Stacey on Tuesday, 15 November 2011
Re: Bloggers from our 'kidney' community
Hi everyone,

I was diagnosed with KD 3 years ago. I remain quiet for a while about my own experience until a few friend became diagnosed. I created a blog called Speak Up ( a voice of KD), i hope you support me and take the time to view it. Please visit my blog and spread the word. kidneyspeak.blogspot.com

By Teresa Taylor on Thursday, 10 November 2011
Labelling food with potassium content
Many of us in Kidney Health Australia and many Australian and New Zealand Renal Dietitians are concerned that we should have mandatory labelling of potassium content on all packaged foods. This is so that people needing to avoid potassium (such as people with kidney troubles on certain medications) can make an informed choice whilst shopping and reduce the risk of heart rhythm problems associated with a high blood potassium.

A window of opportunity to win this argument exists in the next 2 weeks but it has got to the point where direct action is necessary.

If you have had any bad experience with potassium or feel keenly that potassium labelling should be re-introduced to Australia to increase the safety for people with kidney disease and kidney failure please consider contacting your local Member of parliament or Minister of Health. These are the only people who can help us win this argument at this stage.

A list of people to contact is available at:
www.aph.gov.au/whoswho/index.htm

By Rosie Rose on Tuesday, 8 November 2011
Re: live kidney transplant
Good day everyone!

Glory to God I am now on my 7th wks post live renal transplant. Two weeks more and if God is willing, I will be allowed to go home. My elder sister from overseas gladly & generously donated 1 of her kidneys to me. The transplant was done at Princess Alexadra Hospital at Brisbane, who's attentive, caring service is second to none :-) Thank you PA surgeons, renal doctors & nurses for taking care of us. My sister and I were taken good care whilst we were confined at 4BT for 5 days after our live kidney transplant.

After our live kidney transplant I have to stay for 8 wks (two months). The first month is for daily blood tests & renal appointments, yes that includes Saturday and Sunday! The last month we have to go back at "The Arts" for M-W-F blood tests (Pathology) & renal appoinments. We were given day off at least on certain weeks, depending on the progress of our kidneyliver some have to stay back if there's complications which is sad, as you have to stay longer :-( We joke around, telling some, do you need a biopsy? or autopsy (you're dead then) ?

I love the camaredie among us fellow kidney/liver transplants patients, who are waiting for hours for our renal doctor's appointments. If any of you guys from the transplant group middle of September, is reading this blogs, I will cherish our closeness as group of kidney/liver transplants at Princess Alexandra, forever in my heart.

PS I met a lady who's transplanted kidney is 36 years old, she told me that she had the transplant year 1975. Dear Lord, help me take care of my new kidney, amen!

By john on Sunday, 9 October 2011
Re: Bloggers from our 'kidney' community
Thanks Teresa for the info but these sites explain the limitations of western medicine which has left me disillusioned. My mother died at age 65 after 2 failed kidney transplants and many years on dialysis. My sister died at age 51 after 4 years on dialysis. This is what modern western medicine has to offer? PKD has been a curse on my family. When I first heard of tolvaptan back in 2004 i got my hopes up of a treatment. It is now almost 2012 and still we no drug therapy, no news, no hope, no nothing. Life is short and PKD will most likely make my life even shorter. This is why I made up my mind to travel to China for stem cell therapy. I will keep the PKD community posted of my results upon return. I am currently early stage 4 ckd. Age 44 male. Creatinine 3.1 , Urea (bun) 55 , GFR 27. What have I got to lose except for my money and 1 month of my time . I will take my chances overseas. Thanks.

By Teresa Taylor on Thursday, 6 October 2011
Re: Bloggers from our 'kidney' community
Hi John - You may like to go to our KIDNEY NEWS webpage, where some important information is set out on this subject, which will help you be updated on this subject. The article is listed as

"Latest on stem cell research
In response to a Kidney Blog query, Dr Sharon Ricardo, Australian Stem Cell Centre, (www.stemcellcentre.edu.au) advises "Currently the only proven treatments offered involving stem cells are for the treatment of some blood and auto immune diseases. Treatments involve either bone marrow or cord blood, such as a bone marrow transplant for leukaemia. Other stem cell based therapies are still in research phase or in clinical trials. Clinical trials are essential to ensure treatment is proven, safe and effective, before widespread use in patients. Many treatments offered by overseas organisations do not appear to have undergone any clinical trial process and therefore we cannot know if they are safe or if they even work." ASCC's Patient Information Handbook which can be found at www.stemcellcentre.edu.au/For_the_Public/Patient/Handbook.aspx

Further queries should be directed to info@stemcellcentre.edu.au

I also highly recommend you read.... 'Tackling stem cell tourism' at www.eurostemcell.org/co​mmentanalysis/tackling-stem-ce​ll-tourism
Scientists respond to article published in EMBO reports arguing that stem cells scientists should take on more responsibility for tackling this problem.

Should you need any further information, please contact our Kidney Health Information Service on 1800 4 543 639.

By john on Thursday, 6 October 2011
Re: Bloggers from our 'kidney' community
Im considering going to the ........... (REMOVED DUE TO WEB POLICY) Hospital in China for treating my PKD. It involves stem cell therapy. Has anyone had any experience with or heard anything about this place? Any info would greatly appreciated. thanks.

By Jan McLeod on Monday, 12 September 2011
Re: Bloggers from our 'kidney' community
Hi Teresa,
Thank you for your comment 15Jul11. Saw my surgeon on 30Aug11 and he said that the pain in my "void" was from scar tissue. Also I had been taking a vitamin supplement which he said was way too strong and probably the reason for pain in my right kidney. There is still blood in my urine, and now he thinks it might be bladder cancer. Has anybody else had this combination of RCC + bladder cancer? I am not too concerned yet because he doesn't want to see me for 6 months.
Good luck to you, Tegan - it must be scary for you at 19yrs- but trust in your medical team and KHA - they will get you through it.

By Gai on Monday, 12 September 2011
Re: Bloggers from our 'kidney' community
Hi Tegan, hang in there. I was diagnosed with CKF when I was 18. I went on to have a beautiful son and a transplant that has lasted 27 years. I was never on dialysis getting my 'call up' a week before stating training. I have had a wondeful life and although my kidney TX is now on it's last legs - I don't have any regrets at 55 year of age.


By Teresa Taylor on Friday, 19 August 2011
Re: Bloggers from our 'kidney' community
Hi Tegan - thank you for your blessing - it is very much appreciated. We all here at KHA love our work and are very passionate about what we do.
I suggest you contact Stephen Anderson from our Sydney KHA Office, via stephen.anderson@kidney.org.au or call him on 02 9299 4599. Stephen co-ordinates our Young People's Network. I am suggesting this, as I believe you would greatly benefit being part of this group.
Warm regards from Teresa - your 'web angel'.

By Rosie Rose on Thursday, 18 August 2011
Re: 19 yrs old with CDK
Good day to all especially to the 19 yrs old recently diagnosed with CKD.

When I was hospitalised for 4 days prior to my dialysis I met another patient. She's on peritoneal dialysis, but at some stage she started with a vascath, the one with linings/tubes connected to the neck which I am having right now. She told me she was diagnosed with CDK age 19, she's now more than 30 yrs old and what's amazing is, she wa able to completed tertiary education and miracle of all miracle maried with a 10 yrs old daughter. There is hope and life at the end of the tunnel, I learnt to accept my medical condition.
Kidney Health Australia is the best site to start. God bless you!

By Teresa Taylor on Monday, 15 August 2011
Re: Bloggers from our 'kidney' community
Hi Tegan - if you email matty.hempstalk@kidney.org.au and note your location and contact info - he should be able to link you with someone to talk to about this.
We also have a Facebook page which you can find if you search on - Kidney HealthAustralia - which is very interactive and has nearly 1000 friends now, mostly Australian. You may wish to add us as a friend.
Hope this helps - cheers from Teresa (KHA web angel)

By tegan on Sunday, 14 August 2011
Re: Bloggers from our 'kidney' community
hey was recently diagnosed with chroinc kidney failure im only 19 and not to sure if theres a lot of other 19 year olds going through this would also like information on dialysis would be a great help??.....

By Rosie Rose on Tuesday, 9 August 2011
Re: Peritoneal dialysis/Irene
Good day to everyone especially to Irene who'll have peritoneal dialysis. I hope you can cope well. May God be with you!

My health deteriorated this school holiday that I started my dialysis last Jul 28, sadly my body can't wait for the planned kidney transplant on Sept 15. I have this kind of dialysis with lines/tubes connected to my neck...vascular??? I was confined at the hospital for 4 days and this other patient on peritoneal dialysis told me she rather have peritoneal dialysis than the kind of dialysis that I have, as she vascular dialysis before. If my elder sister did not offered 1 of her kidney to me I was told its 'best for me have peritoneal dialysis because when the vascular surgeon ultra sound my arms I was told they are so small that I cannot have haemeodialysis. We are all survivors fellow kidney patients don't lose hope :-)

By Irene Mewburn on Monday, 8 August 2011
Re: Bloggers from our 'kidney' community
HI all you other CKD patients out there!
I'm about to start Peritoneal Dialysis. My journey as a CKD patient has been very topsy turvy (emotional). But I can't say enough thanks for the KSN Kidney supoort Network group - Gold Coast Branch. The group has been very helpful along with my Renal Nurse.
So Join the KSN it will be well worth it!

By Rosie Rose on Saturday, 6 August 2011
accomodations for kidney patients/family at Brisbane
Good day everyone!

For those who don't know it yet, if you are a kidney patient and need hospitalisation/check up at Princess Alexandria Hospital try booking at Kidney Network Support' s unit Their CEO, Kay Schaefer, Bill booking manager and Kim are friendly, helpful and are accomodating.

Through this KHA blogs I extend my appreciation to Kidney Network Support in helping us kidney patients/family. Without their unit I will surely have to pay more than $ 3, 000 for accomodation, as I was asked by PAH to stay near the hospital for 8 weeks after my planned September 15 kidney transplant. Glory to God as if HE is willing I will have my kidney transplant with my elder sister as donor. To all kidney patient please don't lose hope ...we will survive!



By Teresa Taylor on Tuesday, 19 July 2011
Re: Bloggers from our 'kidney' community
Hi Rosie - thank you for your kind comments and I'm happy that you've received good service from our work. You can find out more about our KHA Health and Medical Programs, set up to benefit you.
www.kidney.org.au/KidneyDisease/KidneyHealthPrograms/tabid/617/Default.aspx
Our Kidney Health Information Service 1800 4 KIDNEY which is 1800 4 543 639 is a service where a trained Health Manager provides you with answers to questions. Should you have any questions in the future, you can try this service, you can email the KHIS service at health@kidney.org.au and receive a reply with information to help.
KHA is not funded by Government and believe this service helps our kidney community in many ways. Cheers - Teresa (KHA web angel)

By Rosie Rose on Tuesday, 19 July 2011
Thanks for your quick free reply
Good day to all of you KHA staff!

I just wanna say thank you for this free service. The other day I have some medical questions re: my son's medication, as its not about kidney I log in to this website which I googled ... "Just ask doctor website" and was kind of a shocked as they were asking me to pay $ 42 credit/visa. the doctor is on line you have 5 minutes to pay ... I was so naive I thought they are like KHA :-)

By Teresa Taylor on Friday, 15 July 2011
Re: Bloggers from our 'kidney' community
Hi Jan - if you have any problems, unusual symptoms or pain post op for any operation, but especially with RRC and kidney removal which is a major procedure, you should immediately see your GP, or refer to the treating specialist involved. This does not mean there may be something significantly wrong, but your treating health professionals should be aware of the symptom to advise management of this issue. Warm regards - KHA Web Angel.

By Jan McLeod on Thursday, 14 July 2011
Re: Bloggers from our 'kidney' community
Hello,
I had my left kidney removed due RCC in Nov11. All has been well for last 5 mths but now feeling some pain in the area where it was, and in my right kidney. Is this normal?

By Teresa Taylor on Thursday, 14 July 2011
Re: Bloggers from our 'kidney' community
Hi Rosie - you need to talk to your GP, or the health team organising the tests. They may not comment until all the tests are done so they have a complete picture of the donor's health. I know it is hard to be patient but it won't take too long. If there were any major negatives, they would stop the tests, so that tells you something. Sometimes you need one test results to match with another for a complete outlook. Just hang in there and you will know soon. Cheers KHA web angel.

By Rosie Ross on Wednesday, 13 July 2011
protein in the urine
My kidney donor needs to repeat her 24 hr urine collection as the previous test indicates that she has protein in her wee. All the rest of the work-up tests are ok. If the 2nd 24 her urine collection show that she still have protein in her urine, is she still a good kidney donor for me? She also needs renal kidney ct ultra scan as well as iver-kidney scan. This are the last tests needed prior to our planned kidney transplant.

By Teresa Taylor on Friday, 17 June 2011
Re: Bloggers from our 'kidney' community
REPLY TO - Andrea Goncalves
If you would like to email me at teresa.taylor@kidney.org.au I can provide you with some specific information, to extend from what is in this reply.

Yes, you are definitely entitled to re-imbursement for travel costs - refer to our Familiy and Carers webpage for support information at www.kidney.org.au/ForPatients/FamiliesandCarers/tabid/611/Default.aspx.
n particular you will find a lot of relevant information at this webpage QLD Patient Travel Subsidy Scheme (PTSC) http://access.health.qld.gov.au/hid/HealthConsumerInformation/TravelHealth/index.asp

Paediatric Nephrologists only consult at public clinics in Brisbane. For this care, no fee is involved. When you go to Brisbane, talk to staff about your location etc. and ask them for specific support information. You can also be referred to the Social Worker, attached to the Hospital Clinic you attend.
Hope this helps you Andra - good luck - warm regards, Teresa.

By Andrea Goncalves on Thursday, 16 June 2011
Re: Bloggers from our 'kidney' community
Help with Specialist Care in Regional QLD
Please could anyone help with some information in how Specialist care works in Regional Australia/Queensland???
We moved from overseas 6 months ago and boy 2years old boy was born with some ureters and bladder condition which caused a major urine reflux to his kidneys. He had surgery to fix some of it but he lost kidney function and will need to be monitored for the rest of his life by a Urologist or Nephrologist.
We are living in Airlie Beach, just off Proserpine, QLD. Do I have to take him to Brisbane to his next scan and doctor appointment or Specialist Doctors do visit major centers in Regional QLD??
Is this care free?
Am I entitled to financial help if I have to travel for his care?
Thanks a lot to all for your time,
Andrea (Rafael's mum)

By belinda on Saturday, 28 May 2011
recently diagnosed.
im anxious at the moment about my progress , i have recently been diagnosed with ckd stage 4 and type 2 diabetes, had recent biopsy and Drs are comparing it to a biopsy i had 13yrs ago ..they dont tell me a lot and im usually unsure of what to ask them..I have a slight chest infection and coughing up clear to green mucas, headaches and more tired than usual also shallow breathing and some wheezing..also a low temp of 35c..leg cramps and all the usuall ckd symptoms..im not sure wether i should contact them or not..cannot get into gp until later next week...gfr 18..also feel angry at everything and everyone..

By Julie on Monday, 2 May 2011
Kidney cancer, remaining kidney defect
Hi everyone, recently diagnosis of t2 rcc, remaining kidney defect, cyst and damaged due to neph reflux. Current egfr 31% and diagnosed with viral rosecea, have been scratching for 6 mths. Scared cause there are 2 stresses cancer and dialysis. Trying very best with low gi diet and under renal specialist. Does anyone have similar experience would like to talk.

By Anna on Thursday, 7 April 2011
Re: Bloggers from our 'kidney' community
Had cancer on my left kidney, the doc's said we will take it out as you are looking at no chemo - great right. They went in and clamped the wrong kidney. Now I have no kidneys on dialysis every day for 21/2 hours do this at home. With nxstage - Dialysis is so much fun.

By Kanowna on Monday, 4 April 2011
Re: Bloggers from our 'kidney' community
Gai - re going back on 'D' after failure of TX and having Kidney removed.
I had Tx in 1986 and it failed in 2006. I stopped taking imunosuppresants (on Dr. orders) when restarted dialysis. TX kidney is still there. I have 3 kidneys that dont work and hoping for a forth. My advice has been they only remove old TX if there are problems. Best bet is to rely on the adivce of your medical team. Good luck

By Teresa Taylor on Monday, 28 March 2011
Re: Bloggers from our 'kidney' community
Hi Kelly (Owen) - thank you so much for your informative reply to Kelly (Dawson). There is a lot of research and constant advances in treatment and in tranplantation in Australia and around the world. You have been courageous throughout your life and have dealt with many confronting health issues. This courage and fortitude is an inspiration to everyone. I hope that the current research into transplantation for people with your complications reveals a good path forward for you. You have the best health professionals in the world caring for you all as Australia is seen as a pioneer in new research into transplantation. Thank you again for your contribution to your Kidney Blog.

By Kelly Owen on Sunday, 27 March 2011
Re: Bloggers from our 'kidney' community
I am currently a dialysis patient after suffering HUS from the Garibaldi Food Poisoning in 1995. I noticed some one asked if you can have a transplant after having HUS. In my case i have had a transplant in the past..it was successful until it unfortunately it failed a year later..but this had nothing to do with my previous history of HUS. I am currently waiting for a transplant but my antibodies are so high after having a rejection, so many blood transfusions and having had a child I will struggle to find a match. I am trying to stay strong for my family but anyone on dialysis can probably understand sometimes it is hard to stay strong when you just feel so tired and sick half the time. I am crossing my fingers a match will come along soon :)

By abdrazaq lawan on Friday, 11 March 2011
Re: Bloggers from our 'kidney' community
I was diagnosed end stage kidney disease patient in 2006. I suffered from poly-cystic kidney disease on both kidneys. After a year and half of dialysis sessions I was able to go for transplant. The transplant was successful and I have been living the new kidney...

By Dilys Lazzaro on Tuesday, 1 March 2011
Re: Just started dialysis, need advise
I tried peritoneal dialysis, but it did not work for me, now doing haemo but not having a lot of success. I go to each session feeling well, after about 3 hours I start feeling awful and I continue feeling very unwell for the rest of the day. I realise most people feel very tired and need to rest, this is the same for me but I also feel quite ill. Does anyone else feel this way and can you offer some advise.

By Gai on Wednesday, 16 February 2011
Re: Bloggers from our 'kidney' community
I have had a kidney transplant for 27 years and it is failing (stage 5) and I am to go onto dialysis. I was tranplanted before I needed to go on dialysis so this is all new to me. When I go on to dialysis I asume I will cease taking immunosuppression drugs. Will my immune system attack my transplant and will I need to have it taken out?

By Michael Burke on Wednesday, 16 February 2011
Life On The "T" List
Hello,

My name is Michael, and I am from Massachusetts in the U.S. I have been a Diabetic for over 27 years, and just last year I found out I needed a kidney transplant. At the urging of family and friends recently, I started writing a blog about my experience waiting for a kidney. It is called Life On The "T" List and you can find it at: http://michaelburketransplant.blogspot.com I invite all to take a look at it (the first entry was January 30th) - leave feedback and comments. I hope you find it as useful to yourselves as it is to me. Thank You.

By Teresa Taylor on Wednesday, 16 February 2011
Re: Bloggers from our 'kidney' community
Hi Lynette - About 1 person out of every 750 is born with a single kidney, a condition called renal agenesis. It is more common in males and the left kidney is more likely to be missing. If you are born with one kidney or lose a kidney your remaining kidney gets bigger and heavier. It works harder and provides up to 75% of normal kidney function rather than the expected 50%. More info can be found in the fact sheet Life with a single kidney at www.kidney.org.au/ForPatients/HealthFactSheets/tabid/609/Default.aspx
If you have one kidney it is important to be aware of the injuries that can be caused by contact sports using direct blows or collisions, such as kickboxing, football and karate. This single kidney is more at risk because it is larger and heavier. Think carefully about the possible effects of damaging your kidney when choosing a sport. Get advice from your doctor if you are unsure or ring the Kidney Health Information Service on 1800 4 543639

By Lynette on Tuesday, 15 February 2011
Re: Bloggers from our 'kidney' community
I am at a loss for information at the moment.. My 20year old daughter had serious gall stone pain two years ago and when she went for ultrasound they discovered that she has only one kidney. I can only describe that as baffleing as she was never really sick and we had no indications of this for eighteen years. The only comment for her gp was that most people live normal lives with one kidney. I have been told today by my daughter that there is a high risk of her having children born with both kidneys missing this has floored me. I wouuld like to know where to look for more information. thanks

By Kelly Dawson on Tuesday, 15 February 2011
Re: Bloggers from our 'kidney' community
Hi everyone, I was wondering if anyone out there has had any experience with transplant after having Hemolytic Uremic Syndrome (HUS). For years I have been told it would be too dangerous for me to have a transplant after having had a severe bout of HUS. However, after some new genetic testing, it is now looking like I might be a good candidate. Am still going through the initial stages of tests etc, but was wondering if anyone had received a transplant after this initial illness? Thanks, Kel

By KHA Health and Medical Team on Monday, 20 December 2010
Stem Cell Treatment - current state of research
Dear Eliza and anyone interested in stem cell treatment

Currently, the only proven treatments offered involving stem cells are for the treatment of some blood and auto immune diseases. These treatments involve either bone marrow or cord blood, such as a bone marrow transplant to treat leukaemia. The remainder of stem cell based therapies are still in research phase or in clinical trials. Clinical trials are essential to ensure a treatment is proven safe and effective before widespread use in patients.

The treatments offered by TCM Remedy and by the Stem Cell Rejuvenation Centre do not appear to have undergone the clinical trial process and therefore we cannot know if they are safe or if they even work.

To understand more about stem cells, their potential and the current status of the research we urge you to read the Australian Stem Cell Centre's Patient Information Handbook
www.stemcellcentre.edu.au/For_the_Public/Patient/Handbook.aspx
which aims to helps patients critically analyse stem cell treatments before taking part in them. As with all medical treatments there are risks involved and the aim of the Handbook is to give individuals the information needed to evaluate these risks. Another online resource that may help is
www.closerlookatstemcells.org
which also helps patients to assess what treatments are medically proven and which are not.

If you have any further questions the Australian Stem Cell Centre can help, please contact them at:
info@stemcellcentre.edu.au

By Eliza on Tuesday, 14 December 2010
Re: Bloggers from our 'kidney' community
I found out that China have started stem cell treatment on kidney patients in July this year 2010. They have already treated over 550 patients and claim to have a 95% successful outcome. The link to the website with detailed information on this is www.tcmremedy.com

It would be great to know if what they're doing is bona fide and if so maybe Australian researchers could benefit from this in their research on effective stem cell treatments to use here.

By Teresa Taylor on Wednesday, 10 November 2010
Re: Bloggers from our 'kidney' community
Hi Jeri - please email me at teresa.taylor@kidney.org.au or contact WA Office on 08 9381 9311 of wa@kidney.org.au as a volunteer who helps the office staff has had a similar path.
Alternatively contact the Dialysis and Renal Transplant Association, (DARTA) which is a social support group – Kristen Giles is WA Secretary at kristen.giles@hotmail.com or 08 9525 9628. They also produce a monthly newsletter.

By Teresa Taylor on Thursday, 21 October 2010
KHA Kidney Cancer Patient Stories... WE NEED YOU!
Our KHA office is launching a website on Kidney Cancer - we need Aussie survivors to tell their story and be featured on this website, first names, dummy names, or full name - only what you are comfortable with - ANY VOLUNTEERS email kate.johnson@kidney.org.au or phone 03 9674 4316 - cheers from Teresa, your KHA web angel ... smile

By Jeri on Monday, 18 October 2010
Re: Bloggers from our 'kidney' community
Hi all, I was diagnosed with reflux nephropathy when I was in my mid 30's. It was toatally missed as a child even though I did have several bad kidney infections. I am now in my mid 50's and am just about at dialysis stage. I have had my fistula for several months, now just waiting. My husband has very thankfully been accepted as a live donor but now that the time is getting nearer, ridiculously I am struggling with the decision to go ahead. I have been to a transplant seminar along with my husband and heard alot of technical details but am still very worried. My main concerns are that of the health of my husband, the toll the anti-rejection medications could take, the constant worry of rejection (how do you keep going with that constant worry) and even more strangely I am worried that maybe even after a transplant I won't feel any better/differently! Does anyone know of a support group of people who have been through all of this good and bad???? I live in the Perth metropolitan area. I don't think I want anything formal, I just want to chat with people who have been through it. Thank you, these silly fears are holding me back.
Cheers
Jeri

By Eliza on Monday, 18 October 2010
Re: Bloggers from our 'kidney' community
I see that stem cell clnical trials for kidney disease are now being conducted in India. see the link below for details; http://www.clinicaltrials.gov/ct2/show/NCT01152411?term=stem+cells+kidney&rank=1
This is a get sign for things to come for kdney disease sufferers

By jess on Monday, 18 October 2010
my kidney story
hi everyone, in july of this year it was accidentally discovered that i had low GFR. after lots of tests it has been discovered that i am stage 3 chronic kidney disease. i am 26 and scheduled to have my kidney removed on 1 november. i am so terrified about the procedure. has anyone been through this?

By Teresa Taylor on Monday, 18 October 2010
Re: Bloggers from our 'kidney' community
Hi Jinksy - we can help you, but our Health Manager would like to talk with you via our Kidney Health Information Service - 1800 4 KIDNEY which is 1800 4 543639. When the call is answered, just register your name and contact details with the operator and note it is regarding a Kidney Blog query ... this is all you will need to say. We will be able to connect you with the right people to help you in your area. Warm regards from Teresa - the KHA web angel.

By Jinksy on Monday, 18 October 2010
Re: Support for newbie
Hi,
I started dialysis last week. I have had chronic renal failure for about 10 years and I was told eventually I will require dialysis. I thought I would be strong -I can do this now worries - but I am not handling it. I am a mess - I cry all the time, I do not want to see people and I just don't feel happy. I am the youngest person there, I don't think I can do this..
I am 36 years old, married and I have a beautiful 5 year old daughter. The impact it is having on my family - is awful to watch. How and where do I get the strength to keep going...... it is not fair on my familly and I don't think I can keep going..
Can anyone reccomend a good counsellor who works with renal patients - I live on the Gold Coast- any recommendations would be appreciated.
Thankyou for listening

By Brad Rossiter on Monday, 26 July 2010
Re: Bloggers from our 'kidney' community

Hello,
My Name is Brad Rossiter I am 46 yrs old I have lived at Batemans Bay for 25yrs
I have been married to Lorae for 23yrs, we have a son Trent, 21 years old.
I had until the 11th May 2007 been a Type 1 Diabetic.
Having had Type 1 for a long time I have suffered some of the effects, such as I am legally blind, Chronic Kidney Disease, I had been on Dialysis for 7yrs and I have had both legs Amputated.
But on the 11th May 2007 I received the greatest gift from another Australian that any person can ever receive, that was for me a Kidney Transplant & a Pancreas Transplant.
So no more Dialysis, no more Diabetes and I have a new & full life, with all going fantastic.
With our experiences and knowledge of what life has dealt us, Lorae & I established in August 2007 the Eurobodalla Renal Support Group & Organ Donor & Transplant Awareness & Education.
Lorae & I are members of the NSW Kidney Health Australia Consumer Council Committee, Transplant Australia Team Life “Champions” & Signatures of The Commonwealth Government of Australia “Donate Life”, Eurobodalla Shire Council APAC Committee.
On regular basis we conduct Organ Donor Awareness & Education Days. We are asked regularly to speak at social events, service clubs renal education days, etc..
If you, like thousands of Australians are interested in the awareness of Organ Donation & Chronic Kidney Disease prevention to all , we ask you to join us in our quest in Raising Awareness and Education to all Australians, of all ages.

Thankyou, & looking forward to your reply,
Sincerely,

Brad Rossiter.

Eurobodalla Renal Support Group
&
Organ Donor & Transplant
Awareness & Education.

By Kim on Saturday, 24 July 2010
Re: Bloggers from our 'kidney' community
Hi this is the first time i have ever tried to blog or talk about my Kidney problem. I was diagnosed when I was 2years old with reflux nephropathy. I was constantly sick as a child and had my ureters reimplanted when I was 6. I then continued to have recurrent infections despite being on antibiotics. I then proceded to loose the left kidney at the age of 24. I have now been on antibiotics for the past 4yrs and my blood presure needs close monitoring. I have recently ceased work due to being so tired that I get infections and other illnesses to easily. I am a nurse and understand the ins and outs of this illness but have found it difficult to find Doctors with an understanding of how this feels living with this disease. I don't know how long my Right kidney will last I am lucky to have such an understanding husband. Is there anyone out there with a chronic condition who can share?????

By CJ on Thursday, 22 July 2010
Re: Bloggers from our 'kidney' community
Re: Wendy - teenagers post transplant

I know the feeling! I was diagnosed very suddenly with end stage renal failure at the end of my first year of university age 18. Just as I was legal to drink and then WHAM - no more drinks for you! (However I wasn't that into the drinking culture anyway...) I was lucky and got a transplant from my dad a few months later having gone onto emergency peritoneal dialysis.

I know your daughter has been dealing with this much longer than I have, but I think the feeling would be the same - moving into adult life and suddenly being denied what everyone else can do. I remember taking my meds with a glass of wine and feeling very rebellious!

With luck it's just a phase and she really does know what is good for her. I know when my mum asks me if I've taken my meds each night I also tend to roll my eyes - I know that she's just making sure and I don't really mind, but I would like to know that she trusts me.

When I was going through this I met another girl who was my age going through the same things and it really helped to talk to her. My suggestion - talk to your renal unit to see if there's others her age in your area.

Good luck - I'm sure you're doing a good job :)

By WEndy on Sunday, 25 April 2010
Re: Bloggers from our 'kidney' community
I have a 18yr old daughter that had a kidney transplant 15 years ago, she has just started to go out, taste alcohol, and is getting very lax with taking her meds...how can I convince her to keep taking them regularly and cut back on the alcohol....i have tried to chat with her about the dangers of both, but she just rolls eyes and says I know mum...help..

By Bree on Thursday, 22 April 2010
Re: Bloggers from our 'kidney' community
Hey all i was just diagnoised with IgA and dont know very much about it and am looking to meet others with the same disease. i am having a kidney biopsy tomorrow and possible start dialysis again in the near future and im only 29 . anyway look forward to meeting and chatting with some of you oin the future

By cathy on Tuesday, 6 April 2010
Re: Bloggers from our 'kidney' community
hi,
i have recently been diagnosed with kidney disease. i am so new i am having the ultrasound tomorrow then it is off to the specialist! my creatine is currently at 94 (if someone could explain what this means please, i have a great GP but i think we are both stumbling a bit with this). i have started on ramipril 2.5mg a day, and seem to be taking it well so far. i get a little dizzy after the meds and have some pain in the kidney region (did i mention i only have the right one? the left was removed cause of a birth defect) as well as some tiredness, but overall i feel "normal".

i know that i am just on the tip of it all so any advice, hints or tips, questions i should ask, things i should think about at all please share.

By Lea on Monday, 8 March 2010
Re: Bloggers from our 'kidney' community
Hi,
I’m writing on behalf of a 74 year old lady who looks after her 47 year old son in a wheel chair. She is getting increasingly frail and needs to find some permanent respite for her son. All respite centres that she has contacted will not accept him because he has dialysis for 12 hours every night. Her only options seem to be hospitals or nursing homes and these options don’t really suit either of them. They are located in Queensland. He currently has home dialysis though most respite places are worried about the legalities of permforming this at their centres. Does anyone have any similar experiences or know of any options? Much appreciated...


By Susan Bruveris, KHA Health Services Manager Vic on Tuesday, 16 February 2010
Re: Bloggers from our 'kidney' community
Hi Natalie
When your kidney function starts to deteriorate quickly it is really important that you stay in touch with the specialist that you are seeing. A healthy well balanced diet is important and in particular one that is specially tailored to meet your health needs. Speaking to a renal (kidney)dietitian would be worthwhile to put you on the right track,even calling the Dieticians Association of Australia 1800 812 942 for advice with online meal planners might also be a good start. Kidney Health Australia website www.kidney.org.au also provides some reputable weblinks for dietary advice for those with kidney disease otherwise you can call our freecall information service on 1800 4 543 639. Hope this helps.
All the best
Sue, KHA Health Services Manager Vic

By Natalie on Monday, 15 February 2010
Re: Bloggers from our 'kidney' community
HI, Can any one help me, I am 48 & been watching my one kidney slowly deterate over the last few years, but all of a sudden it dropped heaps. So my diet is very important now, I am looking for a computer programme that will allow me to plan meals & supply me with a protein,vitamin & mineral contents & totals. Can anyone recommend such a programme. I look forward to some help, feeling a bit lost..

By sarah challenor from Kidney health Australia on Friday, 12 February 2010
Re: Bloggers from our 'kidney' community
Hi joseph,
Thanks for your recent blog on our website.sometimes it takes a while to sort out the access sites for renal replacement treatment and it is important to discuss your concerns with the renal team , specialist and nurses in your unit as they are specialists in this area.You can access a number of fact sheets on our website on patient access sites and the fistula. lumps fromthe fistula can vary in size and it would be helpful to discuss this with your renal nurse and nephrologist.Check with the renal unit staff if there are other patients you can talk to about their experiences.You can also contact our 1800 4543639 for further information.Hope all goes well
Thanks

By Joseph on Wednesday, 10 February 2010
Re: Bloggers from our 'kidney' community
Hi Bloggers,
I have been diagnosed with CKD since September 2009. I am now on dialysis 3 times a week, 5 hours a day,HD. I had a Permacath put in in the left hand side of my chest and it worked fine until about 3 weeks ago. In the last week I was told that it had dropped by 5cms and had to have it adjusted. I went into hospital for this and the Surgeon asked me a few questions about it and i explained all the details and he said another had to be put in. This was done on the right hand side in the neck and when I went into dialysis nothing had changed. It was still the same problem and I could not get the blood pressure more than 190.
Has anybody had any similar problem and if so, how was it handled.
Also there is a discussion for a Fistula for me? I have seen the other patients there who have had Fistula's and they are left with these big lumps on their forearm. Is this normal? Bloggers your input is greatly apprecialted. Joseph

By Marie Genevieve on Saturday, 6 February 2010
Re: Marina's questions regarding her mum
Good day Marina!
When my kidney level was eFGR 28-30 my GP prescribed PREDNISOLONE to me due to rashes, itching. Unfortunately it was bad for me as it was steroids! After just a few months of me taking prenidsolone, my eFGR went down to 21! My female renal doctor told me that prenidsolone (steroids) are bads for kidney patients. At the end it was discovered by another specialist, a dermatologist, that the cause of my rashes, itching was the medication prescribed by my GP 5 mgs, increased to 10 mgs by my renal doctors! I am allergic to Ramipril (prescribed for my high blood pressure) its side effects makes me sick, vomit, dizzinesss, coughing, abdominal pains. For a year my sodium blood count was tested but they never checked the results. I only learnt they were testings me for sodium blood count, when I asked medical office copies of my medical records after my epigatric hernia operation. By God's intervention, I had a surgery, a caring anaethesiologist tested my sodium blood count and discovered it was so severely low 123.4 I suffered from hyponatraemia and was sick for almost 2 months after. Come to think of it for 10 yrs I was prescribed INDAPAMIDE ( diuretics) and no one bothered to tell me why I was feeling dizzy, so weak, lethargy having cramps lips so dry that they bleed.Thanks to that caring anaesthesiologist! When I told my male renal doctor about my concerns before, I was told it has nothing to do with my kidneys I can still work. ALLOPURINOL (prescribed by my GP for my ghout/athritis) was also suggested by the dermatologist to ceased prescribing as I am having too much acids already in my body. This site is good, check their Chronic Kidney Disease (CDK) Management in Practice as your guide to know if your Mum GP/renal doctors are really helping manage your mum's CDK. Kidney Health Australia have lots of free reading that you can log/load. Renal doctors and GP made mistakes too! Each patients are different and doctors must not rely on %. I research and luckily learnt last Nov 2009, that I have a critical illness insurance and my insurer have BEST DOCTORS programs that can give me advised, 2nd opinion. I also have our Lord, Jesus as my doctor! All the best for your Mum

By Marina on Sunday, 31 January 2010
Just after information
My mum has Membranous Glomerulonephritis, she was originally seeing a private specialist and he prescribed an alternate course of cyclophosphamide and prednisone, which slowed the progression but unfortuately did not stop the kidney disease. Now she is seeing a specialist in a public hospital. I think she has a kidney function of 20-23, and she is 73 years old. These are my questions and I sincerely hope that someone out there has the answers
1. Has anyone else been prescribed other medication (other than cyclophosphamide and prednisone) for this disease?
2. If so, has it been successful?
3. If someone out there has been prescribed cyclophosphamide and prednisone for the same disease and it went into remission. How long did you take this medication?
4. Finally - with kidney disease, expected to be more prevalent in the general population as it ages. Does anyone know of any studies taking place, into kidney diseases? I have read that there may be studies taking place on the effects of stem cell therapies and kidney regeneration? (possibly at Monash??) I would appreciate ANY information any one can provide.

Kind regards,
Marina

By Jeffrey Lyndon Lee on Monday, 18 January 2010
DIALYZE ME, MY JOURNEY WITH JESUS...
BOOK AUTHOR BIO: Jeffrey Lee was born and grew up in Baltimore. In addition to his work as an author and poet, Jeffrey also has extensive experience as DJ and recording artist for over 20 years. A musician who plays guitar, trumpet, keyboard and blues harmonica. A storyteller who regularly performs original poems and tales. A music producer, arranger and composer of original music.
BOOK SYNOPSIS: This book targets the needs of individuals who are on dialysis and who are kidney transplant recipients and of family members and friends. The author presents informative details about the kidneys and the illnesses that lead to kidney failure. Readers of contemporary and inspirational poetry will also be captivated by the beautiful dexterity and power of the book's poems. www.publishamerica.net/product87388.html

By Megan on Friday, 15 January 2010
Re: Bloggers from our 'kidney' community
Hi Dianna
My name is Megan, and I had a transplant for 19 years which failed in March 2008. Please tell your husband not to stress too much as I know how scary it can be with the creatine rising so high all of a sudden. To be honest it can be one of many things, he could just have a bug in his system that he is not aware of, it could be just an error in the taking of the blood, it could just mean a change around in rejection medications, it could just be a small bout of rejection (which happens), but the specialist know exactly what they are doing and I learnt very early on in my transplant that the only time to panic is when then Doctors are.. :) I wish your husband all the best of health andy many many fantastic years with his new transplant.

By Diana on Wednesday, 13 January 2010
Re: Bloggers from our 'kidney' community
My husband is in his 30s and had a kidney transplant 6 months ago. He had PKD and received a kidney from his mother which was an excellent match. However, in the past month his creatinine has risen from 140 to 196. Doctors have not shed too much light at this stage as to why, but want him to get another blood test in 2 days time. To date everything post transplant has gone really well and a scan of his new kidney early following transplant showed it to be in excellent condition. Doctors were always very confident that the transplant would be a success.

Does anybody out there have any experience with a sudden rise in creatinine and could perhaps shed some light?

By Kotran on Wednesday, 16 December 2009
Re: Bloggers from our 'kidney' community
I will help to find body - REMOVED DUE TO WEB POLICY. Email addresses are deleted by the Web Angel - do not post again

By Vikas Srivastava on Monday, 30 November 2009
Re: Bloggers from our 'kidney' community
Hi, I am 30 years old and underwent a kidney transplant early this year. The surgery took place overseas using the 'Tolerance Induction Protocol' which has relieved me of immunosuppressants. So for all those out there who are not happy with those drugs, keep the faith. Medical Science is evolving for our good. If you want more information contact me at REMOVED DUE TO WEB POLICY

By kim on Wednesday, 11 November 2009
Re: Bloggers from our 'kidney' community
i have just been diagnosed with fsgs and wondered if anyone else with this disease could help me. is there anything i could try to slow the disease.and how long have you had it .and what will happen too me as the disease progresses

By Bradley on Monday, 9 November 2009
Re: Bloggers from our 'kidney' community
Removed due to web policy

By I want to share my 20 year knowledge of living wit on Wednesday, 4 November 2009
Re: Bloggers from our 'kidney' community
Hello to all PKD patients on dialysis, I have been living on dialysis for almost two decades now, I had a ten year run with hemodialysis, and now in my 10th year of peritoneal dialysis. I have a great deal of knowledge and experience to share, my endurancs of trials and tribulations coping with this very complex renal diet and important knowledge to know about the minerals and ways of how to keep them in normal range with a proper renal diet. I am non-diabetic.
Thank you for your time
Gloria Ann Jeff-Moore. Check out my excerpt and author bio online at REMOVED DUE TO WEB POLICY - can be found online via book title - My Renal Life - by Gloria Ann Jeff-Moore

By Chris Tew on Wednesday, 21 October 2009
Re: Bloggers from our 'kidney' community
Tasmanian dialysis patients, kidney recipients, living donors, donor families, renal / medical staff, families and supporters are invited to a picnic in the park - Launceston City park (Rotunda) onh Sunday 29th November, 2009, from 12 noon. There will be a Star Pin presentation to Living Donors at 2pm. BYO picnic lunch. Star Pins are given as recognition of the generous gift given by Living Donors to save the Lives of another.

By Helen on Monday, 19 October 2009
Re: Bloggers from our 'kidney' community
Hi everyone this is my first time ,am 34, just being diagnosed of kidney failure my right kidney is functioning only 7% so it has to be remove soon and am also told you can live with one kidney .just want all kidney sufferers& their famlies don't give up just as am hoping for miracle and GOD divine intervention ,i also wish you all the same

By Joshua Page on Saturday, 17 October 2009
Re: Bloggers from our 'kidney' community
G'day,
I am a first time blogger and wish to sympathise with all concerned.
I am a 33 yr old male who has been suffering from Minimal Change Disease (MCD) for over 3 1/2 yrs.I am convinced my (MCD) was brought on by oral consumption of Colloidal Silver,hence causing scarring of the Kidneys.Has anyone ever heard of this before???

I am currently on a course of Rituximab after relapsing from Cyclophosphamide,Cyclosporine and being Steroid Resistant.I am finding it difficult to find an employee who is willing to take me on,as I am regulary off to the Doc or having treatment.

If anyone knows of any employers within the Gold Coast region willing,I would be eternally gratefull and would not let them down.

Keep your chin up Renal Patients,we are a special lot :-)

By Jessie Neagle on Tuesday, 13 October 2009
Re: Bloggers from our 'kidney' community
My husband aged 73, a diabetic of 30 years and dialysis patient of 8 years, had lanthanum carbonate 750mg before each meal prescribed by his specialist. His calcium reading was approximately the maximum in the normal range. His phosphates, however, were too high. Phosphate levels were initially good with Sevelamer and aluminium hydroxide (Alutabs), but with the multitude of medications to take, taking the necessary dose of phosphate binders became a burden, the dose became unintentionally reduced and the phosphates rose. After being on lanthanum a short while, his blood pressures began falling, at dialysis to maybe 70/40 at times and still low after returning home. The specialist took him off lanthanum and put him back on Sevelamer and Alutabs. (His comments made me think he was not in a hurry to prescribe it for anyone else.) In spite of this, after four weeks the blood pressures were still low. Various diabetic neuropathies were probably affecting blood pressure as well, but the severity was worse than before he had taken lanthanum.

On 30 June, he awoke in the night with breathing problems and was sweating. We called the ambulance. One paramedic took his BP. Systolic was 90. They took him to the local hospital Emergency and he was eventually transferred to ICU and put in a coma. His BP kept falling and in spite of drugs to address this, it went lower and lower and he died the morning of 2 July. ICU staff did not think he had a heart problem.

I discussed this with his GP, who said 'That's flu." Apparently influenza causes the BP to fall. No pathogens were found in blood or sputum tests, but the GP said that they would not be found unless tested for early.

In spite of other reasons for the low BP (diabetic neuropathy and possible influenza), I cannot help thinking lanthanum carbonate was also implicated, because the BP was still lower than usual, even after dialysis, for about four weeks after stopping it.

I write this in the hope that is information someone can use.


By Tony Dix on Wednesday, 7 October 2009
Re: Bloggers from our 'kidney' community
Creatinine levels are the basic measurement checked during end stage renal failure when a high level is indicated the recomendation is dialysys commencement , obviously rising levels can indicate treatment to alleviate kidney failure but often goes unchecked until too late

By Kate on Sunday, 4 October 2009
Re: Bloggers from our 'kidney' community
Can someone help me, I am a nursing student and would love to know more about tests that are done when undergoing haemodialysis... is creatinine measure during this process

By Tony Dix on Friday, 2 October 2009
Re: Bloggers from our 'kidney' community
ist I am 63 yrs of age Male , and had to stop work and commence PD two years ago . Not a good experience , I felt let dow by the sloppy surgeons . I commenced Haemo Dialysis a year ago and it has had it moments an ecoli infection ,a bout of Dengue fever and recently the influenza, I have learnt to appreciate the care given by the renal Team at Cairns Base hospital.They are very busy professionals and it is good to be able to rely on them.I am allways asking questions why this? what does this do? and so on after a year I am finally getting my act together , my recent adjustment to my dialysis method has been to use 14# needles my apprehension in creating such a big hole in my arm has been calmed by the pronounced effect of the extra depth of dialysys performed in the 5 hour session. there seems to be a threshhold one has to move thru like the sound barrier , getting speed up when started the aches start ,mini cranps arms ache, head aches come and go, Now with the deeper dialysis thes complaints usualy pass quickly, and the session finses ok with may be only a few cramps it the toes.
The benefit is felt when I get home, reduced fatiuge, less tendancy to have those "lazy periods 'of listlessness and being happy and comfortable to carry on with house chores and hobbies the sense of achievment being able to complete these at last is a big plus . In the early stages this year it was the norm to crash for six hours in bed with a guilt feeling of wasting so much time in bed. NOW all I have to do is get my A into G and lose some weight from all this good food I have been stacking away

By Mrs RR on Saturday, 19 September 2009
Re: M Raynor, cyclist raising funds/awareness about CDK!
Good day to everyone! I am so excited last week meeting! Well I'd met M Raynor (? hopefully my memory serve me right!) cyclist who is cycling Adelaide- Darwin September 2009 route ! She happenned to be a guest speaker at the school where I was teaching that day! I put my hands up, during the questions/answers sessions and shared my experiences/life now that I am CDK Stage 4. No more chocolates, renal diet that I have to stick to. Students laughed when I mentioned that if my kidneys are down to 10% I'll have to have dialysis, Mrs RR will just close her eyes as, I have a needle phobia!

Amazingly students keep on asking questions about kidneys/kidneys diseases! Well done Ms Raynor for opening their eyes. Nice talking to you, Ms Raynor. If you or your daughter is reading this blogs I feel a connection...

By Teresa Taylor on Monday, 7 September 2009
Re: Bloggers from our 'kidney' community
Dear Manda, Thank you for sharing your experience on the website for others comment. This is often a difficult time for families when the hope of a ‘renewed’ life is suddenly taken away. We are unable to comment as to why the kidney did not work and was rejected but unfortunately this is a risk that is taken when someone has a transplant. I hope your entry will encourage others to provide some insight if they experienced a similar situation. From Kidney Health Australia, we encourage you to not give up hope and to seek support form your local hospital on coping with this loss.

By Manda on Monday, 7 September 2009
Re: A kidney rejection after just 4 days
Hi all,

I am new to this website and just wondered if anyone else has gone through a similar experience that my husband and our family have just gone through.

My 36 year old hubby has been on PD for 10 months now due to IGA Nephritis and he has 5% kidney function in both kidneys. We were blessed to get THE PHONE CALL that a kidney with a match of 5/6 was available for him on August 23rd this year. The transplant apperared to be a huge success with the kidney working immediately and doing so up to 4 days later when suddenly the blood stopped going from the kidney. Unfortunately, the kidney failed on this day and had to be removed which happened to be my hubby's 36th Birthday. We have been told that there was a less than 1% chance of this occuring due to his age and the almost perfectly matched kidney. All of the doctors and nurses are still amazed at the fact that he lost the kidney so quickly and noone had ever seen this happen before. We still have no answers as to why the kidney rejected and we really need answers to be able to get through this terrible experience. We are in disbelief that this has happened and we feel so alone. We are a young family with 2 young girls - 5 years old and almost 2 years old and we are not coping with the loss of the kidney. Has anyone else had a similar experience to us?

By Teresa Taylor on Monday, 17 August 2009
Reply to blog - Cord blood cells
Reply from A/Prof Sharon Ricardo - Monash University, Melbourne

As Group Leader of the Renal Regeneration Laboratory and an Associate Professor at Monash University, I would like to comment on the use of fetal stem cells as a potential therapy for patients with renal disease.

There has been growing interest in fetal stem cells for regenerating a variety of organs including the kidney. Fetal stem cells are not derived from an embryo, but rather from the amnion lining of the placenta following birth. These primitive (immature) cells may be very useful in the future for the treatment of various disorders and there are now options for parents to bank fetal stem cells that may be used for the child later in life. Also, the umbilical cord, and in particular the fetal ‘mesenchymal cells’, may also provide a source of stem cells. However, the blood cells from the umbilical cord have less potential to form other tissues of the body as they have already started to become blood cells.

As a researcher, we are putting all their efforts into the development of new cell based therapies for patients with renal disease. However, we need to understand and control how fetal cells can form kidney tissue and test these cells in animal models in the first instance before patient trials are initiated. For more information, a useful website from the International Society of Stem Cell Research (ISSCR) contains a patient handbook on stem cell technologies and currently approved clinical trials (www.isscr.org/)

By RR on Thursday, 13 August 2009
Re: cord blood cells
Good day fellow bloggers! Edmond where can I get cord stem cells? I am interested, as my kidenys are functioning at just 19% CDK Stage 4! Additional 25% is a blessing from God, and it can help save our government in the long run i as this can slow down deterioration of our kidneys, right?

By Edmond on Thursday, 30 July 2009
Re: Bloggers from our 'kidney' community
Hi Teresa, In a situation, where a country is struggling to cope up with kideny failures and conventional Medical system as dispensed by GP has limited knowledge and experience with stem cells. Hence any single lead is worth its weight in Gold. On reseach approval of new technologies, we all know the system is sadly so protracted, that before a firm response is accepted, millions have already lost their kidneys.
Ofcourse, at the end, people surely will use their GP recommendations and their own intelligence hefore using untested solutions.
The fact that the Stem cells authority did not respond to my request of sharing the full details of the improvement to them also shows, that beuracracy wants to protect the grants of reseach for ever and ever, without caring for a solution, which is immediatly available

By Teresa Taylor on Thursday, 30 July 2009
Re: Open reply to Edmond's comments
Thank you Edmond for your post.
Whilst it is important that information and treatments are sharing amongst consumers, it is up to each individual to speak with their GP/Specialist as to what is the best treatment for them. New technologies, medications and other medical treatments are available at an increasing rate and these need to be research for their efficacy and safety.
Thank you - Kidney Health Team

By Edmond on Wednesday, 29 July 2009
Re: Bloggers from our 'kidney' community
I must pass this sensitive information now to the rest of kidney patients, that I took cord blood stem cells and it improved kidneys by 25%. Can easily recommend to others.
Pity is that I wrote to the australian stem cells reasearch unit to share my experiments and they did not respond at all. Govt Sucks.

By Teresa Taylor on Monday, 13 July 2009
Re: Bloggers from our 'kidney' community
Congratulations to Margie Raynor, one of Kidney Health Australia's largest fundraisers, who starts her latest Renal Ride to Darwin 2009 on Friday July 17 at 8 am, from the Rotunda in Elder Park.
This huge effort is a continuation of Margie's fight to see kidney disease, a 'silent killer', bought to the fore. With the experience of a 20,000 kilometre cycling trip around Australia and 3 Nullabor crossings, Margie now cycles North in yet another epic journey from Adelaide in Sth Australia to Darwin in Australia's Northern Territory - approx 4,500 kilometres!

If you wish to send messages of support during Margie's ride, you can blog here or check her progress at Margie's Renal Ride Blog www.renalride2009.com

GO MARGIE!

Kidney Health Australia and every one of its staff wishes Margie a hugely successful trip. We all unite in appreciation of her strong ongoing support of kidney disease and spreading the word about kidney disease to the people she meets throughout her ride.

By Valerie on Friday, 3 July 2009
Re: Bloggers from our 'kidney' community
My 18yr old daughter was diagnosed with Glomureli Nephritis 3 yrs ago. My question is has anyone out there tried any natural therapies which have helped them?

By Mum on Thursday, 25 June 2009
Re: Bloggers from our 'kidney' community
Hi

My daughter was 3 weeks old when we was found that she had duplex kidney with partial duplication of 1 ureter and also renal reflux. She is now 2 and has only had 2 infections and had the reflux fixed with a deflux injection. My specialist (not a renal one) said that girls with this abnormality usualy also have fertility issues later in life. Is this likely? I can't find any information on the net.

Thanks

By Peggy Kefala on Friday, 19 June 2009
Re: Bloggers from our 'kidney' community
I was diagnosed with Glomerulonephritis about two years ago........... have just found out has progressed to Focal Sclerodic Syndrome which ultimately means I am near kidney failure and have to entertain Kidney dialysys I am 53.
Have been told it is an auto immune problem.....My sister has bullous pemhigoid which too is a auto imnmune problem...Any one out there who can share with me

By Teresa Taylor on Monday, 15 June 2009
Re: Bloggers from our 'kidney' community
Dear Nerida
Thank you for writing on our blog. Here at Kidney Health Australia, we are unable to provide you with any specific medical information; however we understand the difficulty and emotional journey you are now facing. Our advice is to contact the renal unit you are linked in with and ask to either speak with the renal social worker or renal paediatric nurse. Explain to them your situation and ask if they have any support groups from their units. There is a support group for children with kidney disease in Adelaide but I am not sure of your location. I hope other families who read this can provide you with some support and share their experiences with you.
If you require additional information, you can contact our Kidney Health Infoline Service (KHIS) on freecall 1800 4 543 639. Thank you - KHA Health Manager, Wayne Green

By Nerida on Friday, 12 June 2009
Childhood Nephrotic Syndrome
My son was diagnosed with Nephrotic Syndrome caused by Minimal Change Disease (MCD) on his second birthday 8 mths ago. He commenced treatment on Prednisolone and relapsed after 4 weeks, underwent a renal biopsy which confirmed the original diagnosis and that he was Steroid Resistant (SRNS). He is now undergoing treatment on cyclosporine (has had a small relapse whilst sick with a virus) but should hopefully be weaned off treatment at the end of the year – relapse will more than likely happen again. I am hoping someone who has a child that falls into this 5% category that has SRNS could share their experience and what their outcome has been. The treatment and side effects concern me so much but going without treatment is not an option.

By Gloria Ann Jeff-Moore on Friday, 12 June 2009
Re: Sharing with Fellow Dialysis Patient
I'm a dialysis patient of over nineteen and half years of experience, I first mentioned on this blog in February this year (2009), that I self-published a book - My Renal Life. My name Gloria Ann Jeff-Moore. My book will answer a lot of the questions and concerns that I've read from fellow bloggers on this site.

By Wayne - Kidney Health Australia on Thursday, 4 June 2009
Re: Mrs RR entry
Dear Mrs RR,

Thank you for your continued blogging on our website. As noted from your entry, you are looking for someone to share your experience and understanding of where you are with CKD Stage 4. Kidney Health Australia has a "Kidney Connect" Peer support program which offers individuals, families and those affected by kidney disease the opportunity to be matched with someone experiencing a similar situation. If you would like to know more about this program or get involved, please call our freecall 1800 4 543 639 and ask for a health services manager to contact you regarding this program.

Thank you

By Wayne - Kidney Health Australia on Thursday, 4 June 2009
Re: Bloggers from our 'kidney' community
HI Joseph,

Thank you for writing on our Kidney Health Australia Blog. I can imagine that this is a scary time for you having been newly diagnosed with CKD. As kidney disease is a silent killer, with little or no warning signs until almost 90% of kidney function is lost, people are often confronted with a lot questions, emotions and confusion as to "how could this happen".

Kidney Health Australia has a range of resources, fact sheets, a recipe book and also a health information service which you can ring freecall on 1800 4 543 639 to get further information.

It is important that you start to look after your overall health to try and maintain the kidney function you have left as well. Monitoring your diabetes and your blood pressure are great starts.

Please contact us for more information and I encourage you to continue using the blog to gain insight from you kidney community who are and have experienced what you are going through.

By Joseph M on Thursday, 28 May 2009
Re: Bloggers from our 'kidney' community
I am a 63 yrs old and was diagnosed with CKD about 4 weeks ago. I have Type 2 Insulin dependent Diabetes as well.My kidneys are left with 30% function and my eGFR is 11 as I found out in the last 4 days with a blood test done my my local Dr.It was 28 in August 2008 but not picked up then.I had and stiil have high blood pressure.
I had to go to hospital as I had some panting and swollen ankles, and very high BP. I was kept there and ended up in hospital for 10 days. This was when I found out about my kidney problems, and excess fluid in my internals.The fluid was drained by tablets and the BP was brought down by tablets and my BGL was good because I had adjusted my food intake. I was informed that my condition needs dialysis and will be seeing the Specialist on the 5th of June for consultation and the dates for beginning of Dialysis to be discussed.
What I would like to find out is, Are there any diet books for CKD sufferers which I can purchase and if there is, has anybody used this book and will it be helpful.
The reason for this is because I have been told about the protein intake and other foods but as I read through various reports I do see that it varies a ot with people.
I am presently very careful with the food intake. Prior to this kidney problem I did eat a fair amount of meat, white & red and fish, eggs and pork, and now it is different. Also the vegetables suitable for my diet is also something I would like to know more about.
I must say that even though I had diabetes I was in good health and I cannot beleive that this has happened and I am getting a lot of inspiration from the bloggers. This is my first visit.
Your comments will be very helpful and appreciated.

By Gloria Ann Jeff-Moore - patient at Davita, Fairfie on Sunday, 24 May 2009
Re: Bloggers from our 'kidney' community
Hi to all kidney communities:

In February, 2009, I mentioned that I have self-published a book about my life with the polycystic kidney disease and dialysis. The book also answer many of the questions that concerns hemo and peritoneal dialysis patients have about the uncertainty of managing this very complex renal diet, and the medication and what role it plays in the continued management of good health. I'm also a very good cook and I quite understand the renal diet. I explain nutritional facts about the recipes and I also state ways of how it can accomodate a renal diet needs. What to watch out for, especially too much phosphorus or potassium, or in the case, if you have to build the potassium in your body from time to time, (because potassium and protein is removed so much more easily with manual and cycler exchanges,) that I am currently having issues with. You can purchase my book from xlibris.com, amazon.com, borders.com and barnes and nobles. Again, my book title: My Renal Life
I've been living on dialysis for over nineteen years. Ten devoted to hemo and now in my ninth year of peritoneal dialysis. You can read about the excerpt of my book and my author bio on the website Xlibris.com.

Thank you,
Gloria Ann Jeff-Moore, PD patient at Davita, Fairfield, USA

By RR on Saturday, 23 May 2009
Re: Peter last logged onTuesday, 17 February 2009
Good day Peter! Your last posting/comments were logged on 17-2-09. I am curious how your kidneys' % eFGR are at the moment, still at 24?

I want to keep in touch now that my kidneys are at 19% a drop of 2% in just 3 months. Remember me? I answered your queries last February. I was sad last Friday afternoon, upon learning results of my blood tests, so much, that after getting out of my GP's surgery, I just keep on walking, without direction inside the shopping centre. I want to cry, but I can't cry, all I can feel is big lump on my throat. But life has to go on, and I know I have to face reality, move on, be brave & optimistic right?

I just want someone who's at the Chronic Kidney Stage 4 like me to face this illness of ours together until we are at Stage 5. Someone to exchange bits and pieces. I still find joy in gardening and the fact that I can still work. I guessed I'll grab this opportunity whislt I can because I know that sometime in the future my working capacity will be lessen because of my illness, Chronic Kidney Disease Stage 4. I am hoping for a miracle/God intervention.

To all kidney sufferers/patients and family, may all of you cope!

just me,

Mrs RR

By RR on Saturday, 23 May 2009
Re: links/exhange program
Jane Armstrong, Health Services Manager

Good day! How are you? Before I do further research, I wanted to ask your opinion/help regarding my predicament. My husband is willing to donate 1 of his kidneys to me, who's kidney is functioning at just 19% (IgA Nephropathy). After some HLA tests results; this was the verdict: my husband blood type is A+ whilst I am type B. My female renal doctor mentioned about that links/exchange program. I'd read this before, but most are done overseas, is this kind of program legal and available here in Australia? Please help? My husband is willing to donate his kidney to any family who has the same predicament like us as long as one in that family matched my HLA blood type B. Is this possible here?

I can still work but is feeling too tired at once and tends to sleep early now. I am still anemic because of my illness/chronic kidney Disease Stage 4.

Yours sincerely,

Mrs RR

By RR on Saturday, 23 May 2009
Re: Bloggers from our 'kidney' community
To Melissa"

Hi! I hope your husband and you are feeling better after that kidney transplant. You are lucky, you and your husband HLA type grouping matched. My kidneys are now functioning at just 19% sadly my husband's blood type is A+ whilst I am B. My female renal doctor mentioned about links/exchange program. I wonder if there any one out there who is in the same predicament like me.

Its nice that you are giving hope and help to others!

just me,

Mrs RR

By Alice Wellgreen on Friday, 22 May 2009
Re: Bloggers from our 'kidney' community
Thank you Melissa, The website is a bit help. You are very lucky to have a match with your husband. I hope things go well for you. I have had alot of upheaval and changes I have had to make. Any options available to me I would definately consider them. I have had to make several changes already due to pressures of adjustiong to medication, as it turns out, the doctor wants to put me on ARB's as well, so that limits my options again, in terms of work and general life. I have dropped out of a Uni course because the physical demands are getting too much, that saddens me, but what can you do? I have to put my health first to enable caring for my son. I will carry on keeping your success in mind.
Again thank you.
Alice

By Melissa Darnley http://au.groups.yahoo.com/group/ on Saturday, 9 May 2009
Re: Alice's comments
Hi Alice
I found this website useful for my FSGS http://www.nephcure.org/fsgs-facts.htm. I'm not sure whether you have the same form of Glomerulosclerosis but it has the latest thinking on the disease and is continually updated.
I am sure you try to stay well by looking after yourself physically and emotionally. I have been through the stages of searching for all the info I can find and also the denial stages. In the end you can only do all you can and then get on with making the most out of each day whatever form of kidney disease you have. And also take comfort in the fact that we have some of the best kidney specialist in the world and a great medical support system. I managed my FSGS for around 15 years, have been on home Nocturnal haemodialysis for over three, and now are 6 months into looking after a fresh kidney transplant from my husband. Each stage of kidney disease has its own challenges but life can be great!

By Alice on Friday, 8 May 2009
Re: Bloggers from our 'kidney' community
I am 27 and after Googling and second opinion(of treatment options)have been properly informed of the implications of my diagnosis of Glomerulosclerosis. I am now "hovering" between stage 2 and 3 CKD. I have an 8 yo Boy at home. I am currently on ACE medication (changing from ARB's due to complications). I am unsure of how to plan the next stage of my life. Meaning, changes of lifestyle and planning for the future. I accept the fact that I need to make changes, and have taken steps, set a quit date for smoking and changed my diet, exerciseand drinking habits. But as far as planning for the future is concerned, there is little convincing evidence and solutions for glomerulosclerosis. I am wondering if any research has gone into long term managment for glomerulosclerosis? I am non-diabetic and I am not obese as many of the articles I have found relate to. I am open to alternative therapies such as power of thought and meditation, My real conection I guess would be someone in the same situation as myself or even a friend who understands what it is like to have limited information and maybe has been there and has advice to give. I am trying to be practical, and to "get on with it" as I have much I would like to do.
Alice

By Leonie Ingleton on Wednesday, 29 April 2009
Positive experience of Chronic Condition Self Management Course
Hi everyone,
My name is Leonie and I have had a kidney transplant for 38 years. Yes, it is an amazingly long time. I am now 51 yrs old and as time has gone on, I have been suffering the long term effects of drugs. My anti rejection drugs are prednisolone and azathioprine. While my kidney is slowly fading and I could be on dialysis in a few years time, it is the other complications that are impacting greatest on my life. Actually that is a lie. I tend to think that dealing with the immediate physical health concerns will fix it whereas the idea of going back on dialysis is something I could not fix but affected me intensely emotionally. When I was told of the inevitability of dialysis, I was overcome with grief as it brought back memories of the archaic and harsh dialysis treatment of the time. (1969) I had recurring bouts of celulitus, DVT's, skin cancers and these added to my depression. I relied on my kidney doctor to help me manage but as my health concerns became complicated I was not able to cope. I had prided myself in my ability to self manage and I was no longer able to do it on my own. I had not taken the role of the GP seriously and so I was not using the support that I could expect from the GP. A friend suggested I do the Standford Chronic Condition Self Management on-line course, a trial being conducted by SA Health over a six week period. It was just what I needed. Twenty people form a group and there are two moderators. All participants manage a one or more chronic condition, such as diabetes, depression, arthritis, renal disease, etc with the recognition that we face similar challenges in self management. I found it to be very encouraging and helped me to get back on track and find a GP. Other group members offered their wisdom and I could offer mine. I encourage anyone who is struggling to manage day to day, who might be struggling emotionally and who would like to learn more about what you can do to improve your life to make some enquiries. Google it up and see what you come up with. The other avenues of enquiry can be through the Arthritis and Diabetes Foundations.

By Kodi on Sunday, 26 April 2009
Re: Bloggers from our 'kidney' community
Hi,
My little sister has had type 1 diabetes since a chid and has renal failure at age 30. She never managed her diabetes well, never had good solid family behind her to help, which I think is behind her problems now. She was doing PD at hospital for a while and is now doing home dyalisis and is quite capable of managing, plus she works full time and is pretty amazing really. But I am worried that she's just going thru' the motions. The last 12 months have been hard for her. We have been involved from the start and has always had our support. She regularly skips dialysis for up to 3 days and continues not to manage her diabetes. I don't think she cares any more and I and 3 other close family members are concerned for her long term health (and mental state?). I think we need some serious discussions with her. I also think we need to approach her GP, sensitively, but if we don't we are afraid the consequences are going to be tragic. The issues are too big for us, and we need help to know what we can do. I know at the end of the day, the choices are hers, but what do we do? I'm sure others have been thru these kinds of scenarios? What did you do? Any advice. Thanks.

By Greg Collette on Friday, 24 April 2009
New Blog for those just starting and those who want to stay healthy
Hi, I’m Greg Collette and I write the http://bigdandme.wordpress.com blog, about living with dialysis from the recipients’ viewpoint - yours and mine. I have been on Big D for 14 years, off and on, and I’ve learned that regardless of changes in technologies or practices there are some fundamental actions that anyone can take to win back their life. I started BigDandMe on Easter Monday, 2009, to help other normal people whose kidneys have let them down (“kidney failure” is so judgmental!) deal with the daunting prospect of dialysis and transplant.

Over the next few weeks and months I’ll share these things with you. But the blog is a conversation, not a monologue. I want your comments and experience, so we can make the Big D what it should be: a restful interlude that punctuates our normal healthy life.

I look forward to hearing from you!

By Teresa Taylor on Thursday, 2 April 2009
Re: Bloggers from our 'kidney' community
Thank you for your entry. Specific medical advice is always best sought from your GP or specialist. It is important however to note that stopping to smoke, a reduction in weight and reduction in alcohol intake will be most beneficial and reduce these important risk factors for kidney disease and other chronic illnesses. Cheers Kidney Health Information Service

By David on Tuesday, 24 March 2009
Re: Bloggers from our 'kidney' community
I was first diagnosed with IgaN about 20 years ago. My EGR has been dropping recently, from 37% to 31% in 5 months. It has been pretty constant for the past few years.

Just saw my Nephrologist and he was not particularly concerned. I guess there is not much he can do anyway. I am currently only on Coversyl for my blood pressure.

I have never really think too much about my condition until now and I am concerned that it will go down hill fairly rapidly from here. I will be interested to hear others who have been through this stage of the disease, especially your experiences towards end stage renal failure.

Regards,
David

By Rosa on Friday, 13 March 2009
Re: Bloggers from our 'kidney' community
Anthony,

My kidneys are functioning at 21 % (IgA Nephropathy). As such one of the expected things to experience is itching. In my case itching, rashes is worse in my face, then I have those tint, white, yellowish in my arms/legs. My itching and rashes, are worse, depending on what I ate, due to my kidneys which is now unable to process what I'd eaten (too much meat, protein/seafoods... my GP asked me to record/observe what I ate...) so I limit my my protein/seafood intake. Then 1 of my female renal doctor tried to speed up my dermatologist appt. My dermatologist was good he studied my pathology results, asked my medications and discovered the other cuplrits, Allopurinol (ghout/athritis medication) and Ramipril (high blood pressure tablets) as it causes too much acids which causes my face and body to get itchy/swell. Two days after stopping my Ramipril 10 mgs/daily my rashes, itching were gone! I was also asked just to apply dermeze moustorizer developed by a Melbourne hospital. You can buy Dermeze from discount pharmacy for less than $ 8. KHA staff are right, try to visit their health facts sheets, you will learn a lots. On your medical review your prescribing doctor and pharmacist should explain to you your medications. Some of them have bad side effects, look what had happenned to me 7 years of Indapamide medication without any of those doctors asking me for sodium blood count! I end up with a very low sodium in my blood, making me so tired, my brain functions affected for a time, I twitched , thrushed up & down in bed 2 days after my epigastric hernia operation. It took an anaesthesiologist hindsight/professionalism to discovered what's wrong with me. He tested my sodium blood test after my operation and discovered I have a very low sodium blood count. I don't even have the strength to stand for a long time...Ramipril had a bad side effect on me...please read my past blogs, early detection, organ donation and in this site, bloggers from the community.

Peter a blogger at this community site, also had a bad experience with prenidsolone. Take care, and please play an active role in your kidney management and treatment. All the best!

I am worried about you taking prenisolone, my GP prescribed it to me cause she pity me, I feel like a sinner burning whilst still alive on earth, painful, reddish, sometimes swollen face. Wetting with water is painful, and I am at loss, why? Due to desperation, I relied on prenidsolone almost evry 3 weeks, 5 tablets is the limits, but in less than 3 months, my kidneys deteriorates from 28-30 to 21%. Sad. Sad! My female renal doctor asked my GP to stopped prescribing prenidsolone to me.

By Terry on Wednesday, 11 March 2009
Re: Bloggers from our 'kidney' community
Hi all Kidney Bloggers!
I commenced in centre hemodialysis in February this year at age 45 as a result of polycystic kidney disease. I have known about my CKD since I was 27. I had hoped to receive a kidney from my wife but this has not come to fruition, so I have been placed on the transplant list. My aim now is to stay as healthy and as positive as possible until my opportunity for a transplant comes along.
Knowing about my CKD for as long as I have plus being in the fortunate position of having a wonderful Nephrologist for the past 11 years prepared me for when the need for a transplant or dialysis came along although the decline at the end was pretty rapid. I have now being dialysing for a month with 3 four hour sessions a week. I schedule my sessions around my working hours which I believe has helped me settle into my new routine.
I see from a couple of bloggers natural concern on the prospect of undergoing dialysis. I too had similar reservations with the impact on lifestyle, side effects,etc being my main concerns. Although it is early days for my dialysis most of my pre dialysis reservations have disapaited. I would put this down to the fact I am currently doing in centre dialysis in Brisbane at a centre that is close to both work and home (I am very lucky in this respect compared to others particularly in regional areas). The clinical and nursing staff are very experienced and caring plus I have the opportunity to interact with fellow dialysis patients.
In summary keeping all scheduled appointments with your nephrologist and following their advice and treatment plans and not being afraid to ask questions on how your CKD is progressing is important. I also encourage people to research CKD and potential treatment options that may be available to them. The KHA site has information and links to a range of useful and up to date information that I have found really helped me in choosing which dialysis treatment I felt was right for me

By on Tuesday, 10 March 2009
Re: Bloggers from our 'kidney' community
Hi Carol,
If your friend's kidney function has deteriorated to End Stage Kidney Disease, your friend's physician (or kidney specialist) will likely make a referral for you and your friend to see a pre-dialysis educator (usually a nurse) who can discuss the treatment options available. Peritoneal Dialysis (PD) in the home may be one option to consider. There is no cost to the consumer for PD (aside from potential modifications to home/plumbing), however it does require the consumer, friend and/or family member to undergo a period of training. I would recommend that you have a look at our fact sheets on treatment options under the heading "For Patients- Health Fact Sheets" and then discuss this information with your friend's doctor and/or the pre-dialysis nurse. I hope this helps.
Regards,
Beth- KHA Health Services

By Jane Armstrong, Health Services Manager - NSW on Monday, 9 March 2009
Re: Bloggers from our 'kidney' community
Hi Anthony. Your itching could be caused by either your medications, your kidney problem or some other matter. Your doctor should be able to determine this. Have you read some of the Health Fact Sheets in the "For Patients" section of our website? The Chronic Kidney Disease fact sheet describes some of the symptoms of kidney disease and one of these could be itching. Another fact sheet which may provide some useful information is the Calcium and Phosphate fact sheet. Reading these fact sheets may help you to ask your doctor some more questions regarding your itch when you next visit. There are no support groups that I am aware of in the Goulburn region but there is one in Canberra - "Canberra Region Kidney Support Group" - contact Vince McGuire email crksq@shout.org.au. Also there is one in Batemans Bay "Eurobodalla Renal Support Group" run by Brad Rossiter - 02 4472 8074 - email brad rossiter521@hotmail.com . I hope this information helps. Regards Jane

By Carol on Saturday, 7 March 2009
Re: Bloggers from our 'kidney' community
I have a friend with advanced kidney disease induced (probably) by an operation about 11 years ago for bladder cancer. The bladder was removed and a "neo bladder" constructed from a loop of the small intestine. Ureters and urethra were hooked up to the new bladder and the result was that he needed to self catheterise several times a day.
He now suffers dementia and has recently been admitted to hospital with urinary problems, ie: not drinking, not putting out urine.
His potassiium and creatinine are extremely high and docs' concerns is that he is in end stage renal failure. I'm even wondering if the dementia was caused by changes in the blood electrolytes, ie: potassium and creatinine.
I am interested therefore in peritoneal dialysis in the home and wonder if anyone has any experience of it, and the cost of it.

By Anthony on Friday, 6 March 2009
Re: Bloggers from our 'kidney' community
Hi, I was diagnosed with chronic kidney disease 4 years ago and take anti-hypertension medication, prednisone and a diaretic. For the past couple of weeks, I have been experiencing itching on my chest, I find myself waking up scratching my neck and chest. Is this a result of my medication or kidney problem? Also, I live in Goulburn, N.S.W. and was wondering if there was any support groups in the Southern HIghlands at all as I do not have anyone here to talk about my condition or get information from, my GP does not seem to be able to give me any advice.

By Peter on Tuesday, 17 February 2009
Re: Bloggers from our 'kidney' community
Yes Rosa,
Four years ago I had just 17% on both kidneys and then after treatment it went up gradually reaching at one point 31%.
Once kidney failure reaches 50% or more the compensatory mechanism causes the gradual destruction of the remaining nephrons or tubules and the progressing to end stage becomes unavoidable. It is only the speed that varies from person to person.
If you have a chance, go for a transplant because it will give you a better quality of life and a much higher life expectancy. People on dialysis have a very poor life expectancy, but if you have to go for it choose peritoneal dialysis only for the first year. During the first year there is no difference between that and hemodialysis, but after the first year the surviving rates are better for those on the latter. Actually a great percentage of people suffering from kidney failure died before reaching the point of needing replacement therapy. We are prone to develop CVD at a much higher rate than the normal population.
Rosa, all the best with your appointment.




By Rosa, age 50 Darwin NT on Tuesday, 17 February 2009
Re: Peter and all bloggers!
Good day again Peter and to all Kidney bloggers/readers!

Peter, are both your kidneys functioning at just 17% before? But now functioning at 24%? Mine is still eFGR 21% but on March 2, I will have my renal appt. and I am admitting I am somewhat nervous. With God's blessing, I hope it stay the same %, at least! My eldest sister always accompany me now for moral support and on that day my husband will come with us as well. He is willing to donate 1 of his kidneys, he says he only need 1 kidney anyway. We will ask for a transplant work-out. I hope my husband kidneys matched me. Last Dec 3, 2008 when I told my renal counsellor that thou I have donors I was not given transplant work-up nor prepare psychosociallly to any treatments available, she gave me "Baxter, Ünderstanding Treatment Options for Living With Kidney Failure". It has a CD and 2 pamphlets . Organ Transplantation is my first option. Then maybe peritoneal dialysis, which I can do myself at home whilst waiting for a suitable donor. Sometimes I am thinking of going overseas for a transplant. My husband just keep on telling me to hope for the best that his kidneys matched mine... My 2 children are willing to donate, but I am worried that in their older life, they might be carrier of the genetic genes from my mother-in-law. Blood tests shows that at this stage they are not. My mother-in-law was diagnosed with chronic kidney failure, stage 5 at once when rushed to the hospital. A complication caused by her diabetes, sad cause her kidneys were so badly damaged that she's not a good candidate for a kidney transplant. Dialysis at once for her and after 2 years she died. Que sera, sera what ever wil be will be, Peter! When I am feeling low, I just try to remind myself that there are others who are suffering more than me. I am more blessed, thou not rich. Then I feel good! Meanwhile, I will just enjoy gardening and continue feeding the cockatoos visiting our garden.

Thanks to all bloggers I love reading all your contributions. To Kidney Australia keep up the good work! I recieved in the past newsletters, reading materials from Wee magazine (?), Kidney organization soliciting donations, they changed their name I think? I wonder how can I get hold of them again, as I enjoy reading what ever leaflefts they send. Eerie for me, cause during those times I don't even know that thou I am going to GP and was even referred to a renal doctor, I have no inkling that I am a kidney sufferer. I thought I only have a high blood pressure. Have a good day everyone!

By Peter on Monday, 16 February 2009
Re: Bloggers from our 'kidney' community
Hi Rosa,
Thanks for your reply.
Rosa rose rosarum is the only words that I know from latin learned during my school days.
Prenidsolone is a very dangerous drug. I took it in very high doses and end up in hospital with steroid diabetes. While there I contracted a very nasty pneumonia, but luckily managed to survive.
When I had only 17% of kidney functionality I also felt a lot of itchiness, but not now. I think it is caused by the kidneys inability to excrete, among other things, the excess phosphorus.
I also suffer from pernicious anemia, but because both my GP and the nephrologist failed to notice the warnings giving by the pathologist ( he was advising them that I was suffering from megaloblastic anemia) I have now a terrible tinnitus and glossitis (ringing in the ears and burning sensation in the mouth), which will stay with me for the rest of my life.
During the second part of this summer the days here were very hot and, consequently, I was sweating a lot. Sweating seems to be good for people with suffering from kidney failure as it helps to remove toxines from the blood. By leaving in NT you should be able to take advantage of that. Yes you are right, we have 4 to 5 years to prepare psychologically for the dialysis. The problem is that I dont' know if dialysis is the solution.





By Gloria Ann Jeff-Moore on Monday, 16 February 2009
Re: Bloggers from our 'kidney' community
To Bloggers of any kidney community, I've read a numerous amount of stories about individuals who are slowly approaching end stage renal disease and of course the individuals who have maybe just started a kidney dialysis treatment. I was very concerned about the many questions asked about the uncertainty of life with kidney disease and diaysis. I myself have lived with the poly cystic kidney disease and dialysis for almost two decades, and I just recently published a book that details some of my life on dialysis as well as some literature to help a person better understand a renal diet and how to follow it. I do point out ways to avoid some of what I endured living with kidney disease and dilaysis. There is also an invite into my renal friendly kitchen to sample some of my recipes that I share with the community - the book's title is My Renal Life, author name: Gloria Ann Jeff-Moore - priced at $19.99 US dollars. Remember its a informative book and cookbook in one.. I know my book can help a great deal and also ease the tension of many pending dialysis patients out there. I was a hemo patient for over ten years and now in my ninth year of peritoneal dialysis treatment.

By Rosa on Monday, 16 February 2009
Re: Answer to Peter, blogger 10-2-09
Peter I am 50 years old with eFGR of 21%. Just like you I was diagnosed as CDK Stage 4, (IgA Nephropathy) last Nov 07. Shocking as for the last 7 years I have been going to GP and was referred to a renal doctor 7 years ago. Like you, I am only taking anti-hypertension medication, as the other medications complicated my health. Indapamide without sodium blood tests prove to be fatal, I almost end up comatose, 2 days after my epigastric operation, as I end up with a very low sodium in my body. Thanks to the attending anaesthesiologist who followed his insticts based on my concerns, he tested my sodium blood count whilst I was sleeping and asked my renal doctors to stopped prescribing Indapamide to me. Allopurinol ghout/athritis medication) plus Ramipril was stopped as well, last January 22 by my dermatologist, as it causes too much acids in my body, causing me to itch, and have those rashes in my face. Plus because of my renal problem he told me that those medications are affecting my skin, discoloration, itchiness. Yet my renal doctors told me that at 21% my kidneys are still good to have those percieved discoloration, itchiness, rashes and lack of energy. I am experiencing all of those ailments and can be seen physically and notice by others, yet they say "percieved"! I hope all renal doctors followed and try their best to investigate concerns of their patients, as well as studying periodically medications that their patients are taking. At least one of my female renal doctor stopped me too, from taking prenidsolone before. Now since, I don't have, allopurinol medication (for ghout/athritis) thou I avoid seafood and other food, that will cause ghout/athritis, I always have now swollen ankles. One of the bad effect of our kidney disease! Its so painful, that I can't sleep at nightime, I cry in pain, and have to rely on paracetamol. Yet I still try my best to accept teaching when callled for relief teaching. I declined to accept contract teaching since last year, because I easily get tired nowadays or at times feel somewhat dizzy. Teaching is a rewarding job, yet stressful, so I don't want to have a high blood due to stress in teaching, which is bad for me!It is just embarrassing that lately I walks slowly, with a limp yet I look young!Oh, well, that's life!

I will try just eating Kellogs rice, vegetables and fresh fruits, and be vigilant on my renal diet. My exclassmate in grade school, was worst than us Peter, her husband was diagnosed end stage. The husband was rushed to the hospital, but died shortly after admission, with what they thought were just athritis, swollen ankles. They don't know that its end stage, kidney failure. My exclassmates's husband died age 49, just last year. Peter we still have a chance (five years) to psychologically prepare ourself. I hope my husband's kidneys matched mine. Smile and be brave, thou I know that there are times that we have our up and down. I rely not only on doctors here on earth but the HEALER above, I pray to HIM!

Please read my 2 blogs one last Dec '08 (community blogs) and one under the organ transplantation (Feb 09), about my kidney disease, experiences and journey.

Yous sincerely,

Rosa, age 50 Darwin NT

By Peter on Tuesday, 10 February 2009
Re: Bloggers from our 'kidney' community
I have been suffering from CRF for a long period of time without realizing it. Four years ago I was almost at the stage of having to be prepared for dialysis, but after an aggressive treatment with cortisone, which had to be interrupted due to the development of steroid diabetes and other very nasty complications my kidney function improved quite a bit. Recently after having been placed on an ACE inhibitor my kidney function went down from 30% to 24%. If my function loss is at the rate of 2% per annum then in 5 years time I will be in dialysis at the age of 66. I dot not suffer from CVD or at least not yet and the cause of my kidney problem is idiopathic. I am unrestricted in what I eat and the only medication that I take is for the control of the arterial hypertension. Is there anybody in the same situation?



By Wan on Tuesday, 27 January 2009
Re: Bloggers from our 'kidney' community
hi,i'm wan from malaysia,33,male,blood type ... i want to donate my kidney
THIS ENTRY WAS AMENDED BY ADMIN AS IT DOES NOT ABIDE BY OUR TERMS OF REFERENCE.

By Wayne - Kidney Health Australia on Wednesday, 14 January 2009
Re: Bloggers from our 'kidney' community
Hi Kinley,

Thank you for your query. If you would like to discuss this further, we have a free kidney health information service where trained staff can provide information directly to you. Please call 1800 4 543639.

Thank you

By Kinley on Tuesday, 13 January 2009
Re: Bloggers from our 'kidney' community
i have protein in my urine and the doctor recommends kidney biopsy. i am 23 years old. Advise.

By Maria on Saturday, 3 January 2009
Re: Bloggers from our 'kidney' community
I have been on dialysis for about 30 years on and off, and have been waiting for a transplant for 16 years. In the last couple of years I have been in and out of hospital every other month for fistula problems. About 13 weeks ago I had a vein taken out of my leg and put in my arm (a repair job, like the rest) and thought that my fistula problems would be over for a while, but next week I am being admitted yet again to fix my fistula. WHy do these surgeons keep repairing fistulas when they obviously know that there will be more problems to come. I just sick of it all! What is going on with research? Why can't they find a new way of fixing fistulas so that they last much longer? I used to go on holidays each year, I had booked a cruise in 2008, but 2 weeks before leaving I had to cancel my trip due to fistula problems. I would like to go o a trip this year, but as the new year begins, the fistula problems still continue and I don't know what I should do. There must be a better way! What are they doing with pig research (which is closest to humans) in the way of using pig's veins as fistulas or pigs kidneys?
ANyway, that's my winge for now.

By rosa on Friday, 19 December 2008
IgA Nepropathy, Indapamide medication and kidney biopsy!
Good day! I 'll be 50 by the 30th of Dec. And I am now CDK, Chronic Renal Failure, end stage 4, kidney sufferrer, with an EGR of just 21...anemic with ghout & athritis!

Shane and to other kidneys sufferers, please have that kidney dialysis! I don't have that chance,of knowing what kind of kidney disease I have before. I am a structural victim of the hospital system! Why? Several years ago, whislt studying at the University, my university physician, referred me to a renal doctor at the the public hospital here in Darwin. But after several visits, when I asked him, if I'm coming back, I was told to just see a GP! Five years passed, I don't like those GP's as they don't seem to know what they are, doing. I have to tell them I need to have blood tests and I will even tell them the 3 medications (Norvasc, Tritace and Indapamide) prescribed to me, by that first renal doctor. One of them even insensitively remarked that I am his servant, after learning that I'm from the Philippines, originally.

Sad because by the time I met my present GP, who care & studied my case, she informed me that my kidneys was functioning at just 28-30%! I was shocked, to learnt that it was functioning at that level since the last 7 years. She referred me to a renal doctor. By February my kidneys are functioning at just 20-21% I cried in front of my present renal doctor, and told him, how I wished that first renal doctor did not tell me just to see a GP. It misled me and interpreted that there was nothing to be alarmed with! He was told I was taken out of the system as I refused biopsy, I disputed this! There was no proper form, nor call, thou I live in the same family residence for the past 18 years. I was told I skip 2 appointments, I am sensible and I won't skip appointment, particularly on somethings that sounds serious. My present renal doctor corrected the oversight in the past, and he performed the biopsy himself. Too late, my kidney disease is IgA Nephropath, a common kidney disease, causing kidney failure in the world! Unluckily because mine was not treated early at an early stage I I end up, among the 25% that develop chronic renal failure. And I almost end up comatose! Why? Before my epigastric hernia operation (Nov 3), I sensibly told my anesthesiologist that my kidneys are functioning at just 20-21%. He checked my sodium blood test and he told me when I wake up, that my sodium is very low, because of my Indapamide medication. He called my renal doctors and asked them to stop prescribing that medication to me. Indapamide is the tablets to makes me wee, which unluckily washed all the sodium in my body. I was weak, but was discharged the next day. No advised on how to address the very low sodium count on my blood. S I tried doing self-medication, a glass of water with salt, yucky! After 2 days in the presence of my husband, I feel pain, I shaked, thrushing up and down as if I was having a cardiac arrest! I was rushed by ambulance to the emergency ward, my energy plummeted! All along I was complaining to my renal doctors, about my rashes, itchy skins, dizziness, nausea and fatigue, headaches...I was told my itchy skin, rashes has nothing to do wih my kidney disease. Only my GP care, she prescribed me with some ointment. MY dizziness was linked to iron deficiency! I just want to move on with my life! To KIDNEY AUSTRALIA, you can use my story to educate people to have kidney biopsy to diagnosed their kidney disease like what they are doing in France and Japan. Only a biopsy can sho the IgA deposits in the kidney filters. I missed on the opportnity of the symptons being treated effectively, or kidney damage slowed down. Now, I can only work for 8-14 hours each week due to ill health, always experiencing shortness of breath, always tired, muscles twitching, my skin now have yellowish-brown tint...

By Sue O on Friday, 19 December 2008
Re: Bloggers from our 'kidney' community
hello
My mum has had both of her kidneys removed recently and she has commenced haemo-dialysis. Following dialysis some days she is just tired other days she has very bad nausia and dry retches. This can be same day or next day. There seems to be no pattern. Of course she is very deppressed at her inability to cope with her situation as life has so dramatically changed. I am sure if she could read comments from other people with no kidneys (this does seem to be important to her) or at least someone whose life has settled down after the initial shock of change in life, she would see light in the tunnel.

By on Tuesday, 16 December 2008
Re: Bloggers from our 'kidney' community
Hi Shane Paul,

I can appreciate that you may be feeling quite worried and overwhelmed. For many people, learning that kidney function is comprimised can come as quite a shock.

There is certainly a great deal of information about CKD on various internet websites, including KHA's website (see Fact Sheets section). It is always important that this information be utilised in a way that takes into account your own medical history and circumstance. Progression of CKD can occur in different ways for different people. I would suggest that you take the information accessed on the interenet to your GP to review. Having the information in front of you while at a GP visit can prompt you to ask certain questions of your GP.

In terms of your specific situation, I would recommend that you contact our Freecall number 1800-4-KIDNEY to discuss further with a health services manager who can refer you to additional resources/services.

I do hope this information is helpful.
Best Wishes,

QLD Health Services Manager

By Shane Paul on Tuesday, 16 December 2008
Re: Bloggers from our 'kidney' community
Hi KHA QLD Health Services Manager

Thanks for your detailed reply. I have a CKD 3 with a reading 53 eGFR (age 42 years). I found out this last week when I went to see my GP and he was alarmed but he didn't write any refereal and said that we will do another test after a month time.

I had another test 2 months ago with a reading of 49 eGFR but after that test my GP(not the same GP) only said that your Kidney test level is low but didn't alarmed nor suggested any change in diet.

I am very much concerned and worried after visiting all the Kidney related Internet sites that it is a downhill from here. Does everyone with stage 3 has to go to dialysis sometime later in the life or with strict diet and care can we able to stop going downhill for many years. Do people at this stage have a very short life span.

I would appreciate your response since I am very worried.

Thanks
Shane Paul.

By on Monday, 15 December 2008
Re: Bloggers from our 'kidney' community
Hi Shane,

Most of the direct costs associated with dialysis treatments (hospital and home dialysis) in Australia are indeed covered by Medicare for individuals with valid Medicare coverage. Valid Medicare coverage will often require you to be an Australian resident with a Medicare card.

In the event that you have private health insurance, you should check with your insurance provider as to the level of coverage you can receive for dialysis costs under that particular plan.

Depending on whether you decide to utilise home or hospital dialysis, there are some additional dialysis-related costs that you may need to cover yourself. For home dialysis, these additional expenses may include the cost of modifying plumbing or electrical systems in the home. If hospital dialysis is the treatment choice, then you may need to cover your transportation costs to/from the hospital (such as petrol, bus/taxi fares). Always check with your renal health care team to determine if you are eligible for any rebates related to water/electricity or if there are community services available in your area to assist with transportation.

Best wishes Shane,
KHA QLD Health Services Manager

By Shane Paul on Monday, 15 December 2008
Re: Bloggers from our 'kidney' community
I like to know whether the Dialysis cost is covered by Medicare Australia or do I have to pay dialysis expenses from my own pocket.

I would appreciate your reply.

By Wayne Green - National Health Services Manager, Ki on Thursday, 20 November 2008
Re: Bloggers from our 'kidney' community
Hi RustyTears.... all stories shared by people who have kidney disease are worthwhile. Some people experiencing kidney problems often feel isolated. We encourage anyone to share their special stories on this website as each case is individual.
However it is important to note that no personal information or requests for direct financial or face to face support is allowed. Further, the National Kidney Foundation in the USA www.kidney.org has many affiliates scattered through America. You should try to contact the branch closest to you, for the one on one support and info you need. They also offer contact with support groups, via email and face to face groups. Warm regards - Wayne

By rustytears on Wednesday, 19 November 2008
Re: Bloggers from our 'kidney' community
I live in the USA. (please don't hold it against me, i never voted for bush) Anyway, I AM DESPERATE FOR HELP AND ANSWERS AND CANT SEEM TO FIND ANY. LONG STORY SHORT. My mom died at age 24 from ESRD, (i was 2) her brother died at age 24 from ESRD, I was terrified i wouldnt see my 25th BD but made it .I was diagnosed with kidney disease at age 7 and had biopsy at age 27 because my two children, (which I had been assured prior to conception, could not possibly be born with kidney disease even though I had it and my mom...etc.) aged 3 and 5 at the time were suspected because of a routine check up and urinalyasis, later confirmed with a biopsy. ANYWAY, I am desperate to tell someone MY somewhat long story of my DESPERATE SITUATION THAT I NEED ANSWERS TO RIGHT AWAY, BUT wont bother to write the whole thing here unless I am told this is the proper place to do so, and that someone actually cares to read and offer suggestions to help us. i have NO LIVING FAMILY LEFT. THEY HAVE ALL PASSED AWAY. SO, if anyone could please post that i am at least looking for help in the right way and place by doing this here, I bother to put the whole story here. otherwise Iguss I wont bother continuing on with it. please let me know at least that much. thank you im so desperate

By Bradley voller on Sunday, 2 November 2008
Re: Bloggers from our 'kidney' community
Im just amazed at the amount of support that you guys get from your health care system.In South Africa,where i live.renal disease and treatment does not enjoy much priority.It must also be borne in mind that we have a massive HIV infection rate and resources have to be thinly distributed.I have been on HD since 99,PD for 4 years prior to that.Work a full time job as a High school science teacher and have an excellent quality of life.And spend my weekends on my Superbike.CRF need not be a death sentence and one can enjoy a full and productive life whilst on HD.I would love to visit Australia(Phillip Island) some day >if anyone can supply me information for my treatment (locations ,cost etc) whilst im there,down under

By Steph on Saturday, 1 November 2008
Re: Bloggers from our 'kidney' community
Hi everyone,
I'm a dialysis nurse in the NT and we recently had a young woman start dialysis in our unit, she is 17 years old. haemo must freak her out BIG TIME! she always looks frightened and nervous on the machine, and won't talk to me except one word answers. i was wondering if anyone could give me any pointers on where to start? are there any online resources that i could print out to give to her?

By Teresa Taylor on Friday, 10 October 2008
Re: Bloggers from our 'kidney' community
Hi Nat

For further information on Minimal Change Disease - see these links http://en.wikipedia.org/wiki/Minimal_change_disease and www.unckidneycenter.org/kidneyhealthlibrary/minimalchange.html

The specialist you are consulting should be able to provide you with an appropriate treatment plan and further information.

Hope this information is helpful
Best regards T.

By Chris Lloyd on Friday, 10 October 2008
Re: Bloggers from our 'kidney' community
Hi Nat,

I had not heard of this MCD before so I Googled it. In answer to your question I found that the normal intake of protein and in fact more than this amount is not really considered a bad thing in your case. That's a plus. Exercise is strongly recommended (nothing new there). Low salt.
Overall the out look is good for you Nat. I read that up to 50% can relapse, but this can be treated again with steroids. Most never reach end stage renal failure.

Chris.

By Nat on Friday, 3 October 2008
Adult Minimal Change Disease
Hi

I feel a bit guilty posting on this blog mainly because I am one of the very lucky adults who has been diagnoised with MCD instead of one of the more serious conditions. I don't know anyone else with this condition and can't seem to get a real handle on it (maybe its pyschological) e.g. are there things that I should or could be doing which will prevent or assist in preventing a relapse, foods etc ? Any advice would be greatly appreciated.

Cheers

Nat

By Brad Rossiter on Thursday, 11 September 2008
Re: Kidney Bloggers from our 'kidney' community
Dear Sally, I was on PD for 5yrs and this seems to sound a lot like myself. I was advised to change to Hemo and it certainly made a difference to me.My levels all fell and this then placed me back onto the Transplant list, which happened, Regards,
Brad Rossiter
Eurobodalla Renal Support Group
bradrossiter521@hotmail.com

By Sally on Wednesday, 10 September 2008
PD and haemo - treatment decision and queries
Hi to all kidney bloggers - I was hoping other dialysis people may have experienced the following and give me some advice - my creatine clearance is not good - not really bad yet. I am on PD doing 4 exchanges a day - and it has been suggested I may need a "little bit of haemo". Has anyone gone down this route. I am certainly not feeling too terrfic. Regards Sally

By ChaLOTTE wISDOM on Thursday, 28 August 2008
Re: Local events, updates, interesting items
Jess Griffin on Australian Idol was a kidney disease sufferer at the age of two. Go Jess!

By Teresa Taylor on Wednesday, 30 July 2008
Re: General Kidney Health
Hi Sul - when you are ready to absorb more detailed information contact us on the Kidney Health Information Service 1800 682 531 and one of our Health Managers will have a chat to you. Or if you wish to read information before you talk to anyone, access our Fact Sheet Hereditary nephritis: Alport Syndrome in the Patient Information section - under Fact Sheets.
Sharing a problem with others often helps halve the stress.

By Sul on Wednesday, 30 July 2008
Re: General Kidney Health
I was just diagnosed with Alports at 25 years of age this month? I am still not allowing myself to let it settle in my brain?

By Btad Rossiter on Thursday, 17 July 2008
Re: General Kidney Health
Eurobodalla Renal Support Group invites all to attend our next get gogether on Thursday 14 August 2008.
Venue - Batemans Bay Bowling Club
Time - 11.30 am
Lunch after this @ regular prices.
Contact: Brad Rossiter on (02) 4472 8074 or e.mail - bradrossiter521@hotmail.com

By KHIS Infoline Health Manager Rebecca's reply - on Wednesday, 14 May 2008
Re: General Kidney Health
Hi Naomi,
Thankyou for your enquiry - I can imagine that you are feeling emotionally low and unwell! It is very important that you speak with your doctor about the symptoms that you are experiencing to see if he can help with this.
KHA have numerours fact sheets that may be useful for you to read. Fact Sheets we would recommend:
www.kidney.org.au/ForPatients/HealthFactSheets/tabid/609/Default.aspx
-Nephritis
-Kidney Cysts
-eGFR

We also have a book available to purchase titled 'The SANE guide to good mental health,' which may also be of benefit. Please feel free to contact our healthline if you have any further questions.

By Naomi on Monday, 12 May 2008
Re: General Kidney Health
I was diagnosed with Glomerulonephritis Alports Syndrome and recently told that my right kidney is not working and the left kidney is deceasing in size, and my Gfr is reducing. I also have large cysts on my kidneys. I have a very strong family history of renal failure resulting in early death. My problem is that I have naturally LOW blood pressure and taking blood pressure tablets is making me very unwell. Due to the low blood pressure my resting heart rate is very high and I feel faint.Can anyone tell if there is anything else I could take. My doctors have told me I have no choice it's either my kidneys or my heart. I feel very low emotionally and I am unwell most days, everything seems difficult. Hope someone can offer their story to help me. Thanks. Cheers Naomi.

By Enid on Thursday, 10 April 2008
Re: General Kidney Health
I've just found out today that my left kidney isn't functional at all. It was a shock, and I know that other people have much more serious conditions, but I may now be faced with removal of the kidney. It is very small, and has always had reduced function, but flank pain sent me to the doctor, and after tests it was revealed it wasn't working at all. The other kidney is also not normal, being a duplex with double ureters and some malfunction in the lower part which had surgery several years ago. I guess I'm just wanting to talk to other people in a similar situation because I don't like to worry my friends and family. I will be discussing options with my doctor next week. I am trying to think positiively, but feeling a bit nervous about things.

By sam on Thursday, 10 April 2008
Re: General Kidney Health
Thanks Teresa, I have had a look at the links and they have been helpful, also thankyou for your kind words of encouragement.
I will keep in touch

By Teresa Taylor on Wednesday, 19 March 2008
Alport's Syndrome
KHIS Infoline Health Manager Jane's reply -

Hi Sam
All these symptoms you describe are certainly not in your head. You are definitely going through a very stressful time and although stress may contribute to the way you feel it is probably not the cause. Fatigue and nausea are some of the common symptoms that are experienced by those who have advanced kidney disease.
It is important that you discuss these symptoms with your specialist as there may be some treatment available to assist with making these less severe. I have provided weblinks to particular fact sheets which will assist you with understanding more about why you might be feeling the way you do. I hope that your son continues to remain well for many years to come.

KHA Fact Sheets we would recommend:
www.kidney.org.au/ForPatients/HealthFactSheets/tabid/609/Default.aspx
Hereditary nephritis: Alport Syndrome, Chronic Kidney Disease, Anaemia and CKD and our You’re in Charge – Self Management booklet

By sam on Wednesday, 19 March 2008
Re: General Kidney Health
I am a mother who has passed on Alports Syndrome to my son who is now aged 11. I have recently been told my GFR is now at 15 and I will require dyalisis soon. I am feeling a bit tired, like i need a holiday, but i am not sure if this is stress or renal falure? Can anyone help with more information. I also get a bit of nausea in the night and early morning - is this normal or is this in my mind? My son is going well at this stage with no hearing or eyesight problems, I have my fingers crossed that he will have no problems until later in life.

 
 
 
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