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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 (93)  
By becckyjohns on Friday, 29 August 2014
Re: Bloggers from our 'kidney' community
Hello Everybody,
I am new to the blog, I just thought I would share a small bit of my story as it is a pretty long one.
My name is Beccky Johns and I am currently 21 years of age. I was born with Polystic Kidney Disease, my mum and dad had a son born prior to me who was also born with PKD, Unfortnaly he died at 6 and a half months old. My mum and dad were told not to have any more kids, they took a risk and had me, I also have a younger sister who is 3 years younger who is completely find and fully healthy. I am the only one on both mum and dads side of the family who has PKD, it can’t be found anywhere.
I was born a fighter and I live everyday as a fighter, my whole life has been a rollercoaster, it has had its ups and downs and it has been a long road but looking at my life now it has been well worth it.
I was told that my kidneys would last 6 years, but I proved them wrong making my kidneys last until I was 11. I started peritoneal dialysis when I was 11 years old and also attended my first kidney kids camp which I would 100% recommend. As an 11 year old getting told that you’re going onto a life support machine was really not something you wanted to hear and it scared me, there were so many questions I wanted to ask the nurse that couldn't be answered because they hadn't been through dialysis themselves. Going on the camp, I got to meet people who were on dialysis, had a transplant and even just more kids who suffered kidney disease which made me feel like I wasn't alone, I wasn't the only one having to take all these meds, we could talk for hours and never get sick of talking about our lives living with kidney disease because we had so much in common, 10 years down the track I still talk to all those kids that I meet from the first camp I went to. Each camp I have attended I feel like they are my family as we have such a close connection/ bond. Even tho we are from different states around VIC, when we are reunited it’s like we never left each other. So I was on dialysis for about 6 months until my dad donated his kidney for my 12th Birthday. A success and mum was ringing up everyone saying it was great news... then possibly the worst thing happened, the kidney had lost blood supply to the main artery and the kidney was dying off really fast, they were rushing me into surgery and had cut off the 85% that had died so I had 25% functioning left inside me. The doctors had said they thought it might last 3 months, but me being a fighter I made it last 3 years and 11 months. After that I was back onto peritoneal dialysis this time it was for 18 months while my mum went through many tests to make sure she was a match and also managed to lose 25-30 kilos to be fit and healthy for recovery. The date was pencilled in for the operation to happen on the 10th June 2010, by this time I was doing year 12, we knew that the transplant was going to be happening this year so I had decided to do year 12 over 2 years as I live in a rural area and my hospital was a 2 hour drive. As I said earlier this transplant was from my mum, I was so scared that what would happen last transplant would happen again, my doctors were very hesitant to have my mum as a donor as my last kidney transplant I had gained some anti-bodies from dads kidney, I was on the waiting list but it was going to be very rare for me to get a kidney as I was such a hard and complicated match, I had all these words and images in my head the night before the transplant that I just couldn't sleep. I had learnt from a great friend I met at a kidney camp she said it was better to go into the surgery excited, positive and just forgetting the fact that you were going into a life changing surgery. As you can imagine, once you go through those doors there is that distinct smell of the sleeping gas and the atmosphere just makes you feel scared all these surgeons walking around with their blue slippers, their masks over there nose and mouth and those surgery gowns. So despite all that I had my iPod and my headphones in blasting the music and just getting my positive vibes on, I remember going to sleep with one of my favourite songs and it just made me in such a good mood.

The next thing I knew I was waking up in ICU with my dad by my side saying bec, bec everything went successful and your kidney is producing loads of urine and your creatine is already down to 115. I actually couldn't believe what I was hearing, I went in with a creatine of 985 or something. My whole life I had never even heard of a number that low even when I got dads kidney I think the lowest it got was 200. There were a few things that happened after the transplant, I gained diabetes due to the high dose of medication I was on, and I got discharged from the hospital after 7 days and then put back in the day after looking at my blood results. I lived in Melbourne for about 3 months while I was still getting daily check-ups, but apart from that I had a new life, I had so much energy, I think my younger sister had a new best friend because I was ready to do anything and everything with her, my health also made me feel tired not wanting to do anything. I had this new source of happiness, freedom and energy I was literally bouncing off walls. One of my most achievements that year was getting my licence, completing my 3 subjects for year 12 and actually being able to finish the year on such a positive note.

4 Years on in 2014 I have achieved so much in my small life of a 21 year old. I may be only 149cm tall but what I lack in height I think it makes up for with strength and courage in my years. I was able to receive a college life award in my final year of school as well as DUX for photography and I also came out with an enter school to get into University. I have been able to have a part time job with target for the years after finishing school and I just kept on saying in life I will take a gap year.

There are so many people in life who know what they want to do with their life after they finish school, but for me I really had no idea, my heart wasn't set on anything and I was always worried that if I got into University something would happen to my health and I would get sick, I had always put my health before my own life pretty much, there were so many opportunities that I could have taken but my health stoped me.

In 2014 I have never felt so happy, healthy and normal in my life. I thought it was impossible for someone who had so many complications in their life to feel so happy and positive in the way I live my life every day. Late April I decided to take a leap of faith and get in contact with Kidney Health Australia as it was always one of my passions to work within the organisation. Without KHA my life would be so different, I don't think I would be so positive in how live my life, so I told them how much I had always wanted to work for the business, straight away I got an email back saying to come to the office have a meeting and the manager had a picture in her head that she had a job for me.

To be honest I couldn't keep the smile off my face and couldn't believe what I was reading. So as your reading this, I am living my dream life, I now live out of the country and in the big city of Melbourne which has always been another dream. I had always relied on my parents that I thought I would never be able to live out of home. I now live on my own in my own little apartment and work full time 9-5 every day at Kidney Health Australia. I can’t wipe the smile off my face every day when I rock for work, I have so many wonderful opportunities that have been presented with me so far while working here and I can’t wait to see what the future brings for me in life.

I have tried making it short, but let me just say this isn't even half of my life story.

By Yvette on Thursday, 21 August 2014
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. Re travel....Australia is easier to see on dialysis but overseas difficult. I guess one can't have everything. I'm really keen to do Nocturnal Hemo but live with my sister (rented apartment) and move out soon...it will be financially difficult for me to rent on my own and have the issue of installing a dialysis machine in my new abode. I will apply to Dept of Housing for a unit to give me a secure home but the wait may be years. Any advice out there...

By Btad Rossiter on Thursday, 21 August 2014
Re: General Kidney Health
Eurobodalla Renal Support Group invites all to attend regular meetings in Batemans Bay NSW. Contact: Brad Rossiter on 02 4472 8074 or bradrossiter521@hotmail.com

By BP on Thursday, 21 August 2014
Re: Bloggers from our 'kidney' community
My son is now 11 years old and has multicystic left kidney ( meaning only right one is functioning). My concern is that he has been doing taekwondo for a couple of years now, but now its getting more intense I want to know if its still safe for my son. What are your thoughts?

By Ainslie Bolton on Thursday, 21 August 2014
Re: Bloggers from our 'kidney' community
Your concerns on your sons Taekwondo are valid - we suggest anyone playing contact sport with a single kidney should follow up with a doctor or physiotherapist for specific advice. Health professionals may suggest that they would prefer 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. We suggest you have a Kidney Guard specifically made and fitted so he receives maximum protection. He must be refitted with his Kidney Guard as he grows. The next question - where to get a Kidney Guard? Speak to your Nephrologist, Physiotherapist or Occupational Therapist for local contacts for Kidney Guards or contact a Prosthesis and Orthotics company who may custom make and fit Kidney Guards. Ensure you discuss all costs and required referrals. Kidney Health Australia does not refer to specific practices, so we encourage you research thoroughly. Visit www.geelongorthotics.com.au/news.aspx for further information.

By Teresa Taylor on Thursday, 21 August 2014
Re: Bloggers from our 'kidney' community
Hi Eileen - thank you for sharing your thoughts on our blog. We can supply a more detailed answer if you call our Kidney Health Information Service (KHIS line) on 1800 454 363 or email info@kidney.org.au and include details on your age, other health problems etc.

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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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!

 
 
 
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Last updated: Oct 2014.