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Your Kidney Blog
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Use your Kidney Blog and be heard
Our Kidney Blog is Australia's first Kidney Health Consumer feedback mechanism (no registration required) enables people in our kidney community to share personal views and stories. It provides key decision makers with feedback from those at the front line dealing with this silent killer. In a busy world it's difficult to be heard - contribute your thoughts, help build a meaningful meeting place and voice for our kidney community. Our Kidney Blog is reviewed regularly by our Consumer Participation Committee. You may also wish to:
Start blogging - It's simple, just click on subject link below, enter comment at bottom of page - tick to upload. Any entry may be moderated if it does not fulfil our Terms of Reference or Rules of Conduct shown on our YAP Space webpage.
Current Blogosphere Quick Links
Bloggers from our 'kidney' community I Transport I Home dialysis I Organ Donation I
Donor Compensation I Early Detection and Prevention I
NOTE - Material posted is reviewed - personal ID, contact information, health information which is not evidence based or product promotions must not be displayed. We encourage free and creative expression, however in any environment where people are given this freedom, conflict may arise. If an author uses language or materials that offend it will not be displayed. Do not post content that is unlawful, harmful, threatening, abusive, harassing, defamatory, vulgar, obscene, libelous, invasive to another's privacy, hateful, or racially, ethnically or otherwise objectionable.Treat other people's privacy as you would your own.
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Bloggers from our 'kidney' community
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Comments (100)
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By Brad Rossiter on Monday, 26 July 2010
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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.
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By Kim on Saturday, 24 July 2010
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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????? |
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By CJ on Thursday, 22 July 2010
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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 :) |
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By WEndy on Sunday, 25 April 2010
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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.. |
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By Bree on Thursday, 22 April 2010
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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 |
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By cathy on Tuesday, 6 April 2010
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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. |
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By Lea on Monday, 8 March 2010
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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...
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By Susan Bruveris, KHA Health Services Manager Vic on Tuesday, 16 February 2010
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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
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By Natalie on Monday, 15 February 2010
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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.. |
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By sarah challenor from Kidney health Australia on Friday, 12 February 2010
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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 |
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By Joseph on Wednesday, 10 February 2010
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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 |
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By Marie Genevieve on Saturday, 6 February 2010
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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 |
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By Marina on Sunday, 31 January 2010
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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 |
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By Jeffrey Lyndon Lee on Monday, 18 January 2010
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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
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By Megan on Friday, 15 January 2010
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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. |
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By Diana on Wednesday, 13 January 2010
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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? |
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By Kotran on Wednesday, 16 December 2009
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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 |
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By Vikas Srivastava on Monday, 30 November 2009
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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 |
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By kim on Wednesday, 11 November 2009
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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 |
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By Bradley on Monday, 9 November 2009
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Re: Bloggers from our 'kidney' community |
| Removed due to web policy |
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By I want to share my 20 year knowledge of living wit on Wednesday, 4 November 2009
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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 |
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By Chris Tew on Wednesday, 21 October 2009
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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. |
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By Helen on Monday, 19 October 2009
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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 |
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By Joshua Page on Saturday, 17 October 2009
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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 :-) |
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By Jessie Neagle on Tuesday, 13 October 2009
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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.
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By Tony Dix on Wednesday, 7 October 2009
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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 |
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By Kate on Sunday, 4 October 2009
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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 |
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By Tony Dix on Friday, 2 October 2009
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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 |
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By Mrs RR on Saturday, 19 September 2009
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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... |
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By Teresa Taylor on Monday, 7 September 2009
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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. |
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By Manda on Monday, 7 September 2009
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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? |
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By Teresa Taylor on Monday, 17 August 2009
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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/) |
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By RR on Thursday, 13 August 2009
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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? |
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By Edmond on Thursday, 30 July 2009
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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 |
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By Teresa Taylor on Thursday, 30 July 2009
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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 |
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By Edmond on Wednesday, 29 July 2009
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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. |
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By Teresa Taylor on Monday, 13 July 2009
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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. |
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By Valerie on Friday, 3 July 2009
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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? |
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By Mum on Thursday, 25 June 2009
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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 |
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By Peggy Kefala on Friday, 19 June 2009
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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 |
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By Teresa Taylor on Monday, 15 June 2009
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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 |
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By Nerida on Friday, 12 June 2009
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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. |
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By Gloria Ann Jeff-Moore on Friday, 12 June 2009
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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. |
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By Wayne - Kidney Health Australia on Thursday, 4 June 2009
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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 |
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By Wayne - Kidney Health Australia on Thursday, 4 June 2009
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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. |
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By Joseph M on Thursday, 28 May 2009
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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. |
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By Gloria Ann Jeff-Moore - patient at Davita, Fairfie on Sunday, 24 May 2009
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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 |
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By RR on Saturday, 23 May 2009
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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
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By RR on Saturday, 23 May 2009
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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 |
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By RR on Saturday, 23 May 2009
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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
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By Alice Wellgreen on Friday, 22 May 2009
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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 |
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By Melissa Darnley http://au.groups.yahoo.com/group/ on Saturday, 9 May 2009
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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!
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By Alice on Friday, 8 May 2009
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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 |
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By Leonie Ingleton on Wednesday, 29 April 2009
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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. |
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By Kodi on Sunday, 26 April 2009
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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. |
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By Greg Collette on Friday, 24 April 2009
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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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By Teresa Taylor on Thursday, 2 April 2009
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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 |
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By Rosa on Wednesday, 25 March 2009
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Re: David , IgA n sufferer |
Dear David!
Good day! Please read my past blogs re:IgA,organ donor, early detection on various blogs in this kidney site. Try www.kidney.org/atoz/index.cfm or e- medicine. I don't want to repeat them as it makes me sad... Read other bloggers stories as well...Your kidney doctors and you yourself can slow down deterioration of your kidneys. With treatment 2-4% or 1-2 per year loss of kidney function is normal, without treatment 5-10% loss per year!
Like you mine my kidney disease is IgA Nephropathy which was only diagnosed after my biopsy on the 27th of Feb 2007. Please read Chronic Kidney Disease (CDK) Management in General Practice, you are now in Stage 3 CDK moderate kidney function, there is clinical action plan which is well explanatory, clinical tip, medical review, and common CDK complications. Try to read and down load " Principles of Optimal Care of Australians with Chronic Kidney Disease". There are 24 principles. no 2 is SLOWING THE PROGRESSION OF KIDNEY DISEASE, which states that kidney disease can be slowed with medicines that protects your kidneys. Your GP can prescribe them aim for a bp of 120/80. Lead a healthy lifestyle, be active for more than 30 minutes most days, have a healthy diet (see a renal dietician), become a non-smoker, there is also topic there if you are a diabetes... I hope all your medication are thorougly explained by your prescribing doctor, as they should be vigilant for possible risks and should monitor adverse outcomes. These reading are available through this kidney site and its for us for free!
All the best!
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By David on Tuesday, 24 March 2009
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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 |
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By Rosa on Friday, 13 March 2009
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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. |
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By Terry on Wednesday, 11 March 2009
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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 |
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By Beth Richardson on Tuesday, 10 March 2009
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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 |
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By Jane Armstrong, Health Services Manager - NSW on Monday, 9 March 2009
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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 |
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By Carol on Saturday, 7 March 2009
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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. |
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By Anthony on Friday, 6 March 2009
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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. |
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By Peter on Tuesday, 17 February 2009
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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.
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By Rosa, age 50 Darwin NT on Tuesday, 17 February 2009
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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! |
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By Peter on Monday, 16 February 2009
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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.
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By Gloria Ann Jeff-Moore on Monday, 16 February 2009
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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. |
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By Rosa on Monday, 16 February 2009
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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 |
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By Peter on Tuesday, 10 February 2009
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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?
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By Wan on Tuesday, 27 January 2009
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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. |
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By Wayne - Kidney Health Australia on Wednesday, 14 January 2009
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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 |
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By Kinley on Tuesday, 13 January 2009
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Re: Bloggers from our 'kidney' community |
| i have protein in my urine and the doctor recommends kidney biopsy. i am 23 years old. Advise. |
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By Maria on Saturday, 3 January 2009
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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. |
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By rosa on Friday, 19 December 2008
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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... |
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By Sue O on Friday, 19 December 2008
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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. |
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By Beth Richardson on Tuesday, 16 December 2008
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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
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By Shane Paul on Tuesday, 16 December 2008
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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. |
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By Beth Richardson on Monday, 15 December 2008
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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
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By Shane Paul on Monday, 15 December 2008
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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. |
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By Wayne Green - National Health Services Manager, Ki on Thursday, 20 November 2008
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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 |
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By rustytears on Wednesday, 19 November 2008
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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 |
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By Bradley voller on Sunday, 2 November 2008
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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 |
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By Steph on Saturday, 1 November 2008
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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? |
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By Teresa Taylor on Friday, 10 October 2008
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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. |
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By Chris Lloyd on Friday, 10 October 2008
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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. |
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By Nat on Friday, 3 October 2008
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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 |
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By Brad Rossiter on Thursday, 11 September 2008
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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 |
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By Sally on Wednesday, 10 September 2008
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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 |
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By ChaLOTTE wISDOM on Thursday, 28 August 2008
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Re: Local events, updates, interesting items |
| Jess Griffin on Australian Idol was a kidney disease sufferer at the age of two. Go Jess! |
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By Teresa Taylor on Wednesday, 30 July 2008
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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. |
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By Sul on Wednesday, 30 July 2008
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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? |
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By Btad Rossiter on Thursday, 17 July 2008
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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
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By KHIS Infoline Health Manager Rebecca's reply - on Wednesday, 14 May 2008
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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. |
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By Naomi on Monday, 12 May 2008
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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. |
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By Enid on Thursday, 10 April 2008
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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. |
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By sam on Thursday, 10 April 2008
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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 |
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By Teresa Taylor on Wednesday, 19 March 2008
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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 |
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By sam on Wednesday, 19 March 2008
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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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