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Location: BlogsYour Kidney Blog - Speak your mind    
Posted by: admin Friday, 22 May 2009
Organ transplantation funding a major boost for Kidney patients - around 60% of all organ transplants carried out in Australia relate to the kidney. This strategy and funding by Federal Government to improve organ donation provides a major boost for Kidney Patients forced to wait an average of four to six years on dialysis for a transplant.

Kidney transplantation is successful in over 90% of cases and Australia has one of the best success rates of kidney transplant survival in the world. One person a week dies waiting for a transplant.  See latest available donor statistics.  Have your say.

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Comments (34)  
By Teresa Taylor on Thursday, 29 August 2013
Live organ donation support scheme is working
Live organ donation support scheme is working - on Sunrise today, the latest statistics show a huge increase in the last two months in live kidney transplants. See video which includes a wonderful story of a Dad gifting his kidney to his little son, which will occur when the boy is strong enough.
http://au.tv.yahoo.com/sunrise/video/watch/18700842/dad-has-transplant-to-save-son/

By Dr Katrina Bramstedt on Sunday, 17 February 2013
Re: Organ Donation
If you are interested in learning more about living donation, as well as the issue of family vetoes of registered donation consents, check out my two new medical journal articles: http://onlinelibrary.wiley.com/doi/10.1111/ctr.12087/abstract and http://onlinelibrary.wiley.com/doi/10.1111/imj.12029/abstract More info is also at www.TransplantEthics.com


By Sue on Friday, 19 October 2012
Re: Organ Donation
Hi,
Like KIm I was born with reflux and went through alot of procedures throughout my life. I was told when I was 12 years old that I would need a kidney transplant and was prepared for dialysis. I lasted until I was 20 years old to start dialysis and had my first transplant in 1992 where I was in hospital for 3 Months with complications. I was lucky enough for it to start working and it lasted until 2012. I was lucky to be able to have a beautiful little girl in this time and am very grateful for that. I have now been back on dialysis for 8 years and unfortunately have no-one to donate. I appreciate that I have already had a transplant before, but I would love a chance to have another one so my daughter can see me not sick anymore, as that is all she has ever known and worries about me alot and I worry I am not going to be around for her. I know their are alot of people out there waiting and I wish that there was a miracle cure for us all. I know that it can be a frastrating wait, but all we can do is hope and pray that one day we will be the ones to get the call.

By Kidney Health Australia on Tuesday, 10 April 2012
Re: Organ Donation
Thank you so much for sharing your story Kim.

By Kim on Saturday, 14 January 2012
Re: Organ Donation
Hi All,

My name is Kim and I would like to share a little about my life as live kidney recipient. I have had kidney reflux since birth and was quite ill as a small child. I had a pretty easy adolescent life but my problems began again when I reached adulthood. It was then confirmed that I need a TX.

My first TX was in January 2002. I was very fortunate to have a wonderful family and managed to miss out on the not so fun dialysis. My eldest sister was a perfect match for me and she had no hesitation in donation (considering she has never had any type of medical procedure and only ever went to a hospital to have her children).

All went extremely well for both of us and I was released from RPA Sydney after 10 days, I think t was a B'day present as I was released on my b'day.
Since having the first TX I have had no issues at all until I had my son almost 3 years ago. Due to complications after the birth of my son I experienced all the complications one can have with a TX. I suffered chronic regection and was put through some pretty heavy procedures and medications to try and reverse the rejection process but to no avail. Eventually I had no choice and was being prepared for surgery to have a gateaux loop placed in my arm in prep to begin dialysis.

All I can say about dialysis is that it is a part of my life that I choose to forget. It doesn't hurt in that sense but it is the imposition it places on your family and your general life.

Eventually another TX was needed and that's where my story gets interesting.

As you all may or may not be aware, you are not eligible to be placed on the TX list until you begin dialysis. This for many people can and will take years, some unfortunately do get the opportunity to have that second chance at life. This is where my story may be of important information to some.

I was placed on the TX waiting list and knowing the extent of kidney disease in Australia I knew I would be waiting a very very long time for the prospect of another TX.

It was at my first initial visit to the dialysis nurse at the Woden Valley Hospital (ACT) that we discovered an alternative to long term dialysis. The dialysis nurse asked us if we were aware or had heard about the PKE (Paired Kidney Exchange). This involves a donor and recipient who are not a match. My husband and I fitted this criteria and were placed on a list (similar to the TX wait list). Every 3 months they assess the candidates (donors and recipients) and find matches amongst those in the group. The group selection before ours they had 34 people (donors and recipients), out of those 34 people, 13 TX were performed in various states around Australia. It is all legal and is strictly confidential. We know nothing about the recipient of my husbands kidney and nothing about the donor of mine. The PKE has changed our lives for the better. My husband and I had our surgery in Oct 2011 and are both doing extremely well and are back to enjoying our lives and spending quality time with our young son.

What I would like to happen from my story is for the message to get out there for those who are in need of a TX and have a willing family member or even a very good friend who wants dearly to help but are not a blood match.

There is very little information regarding PKE as it has only been performed in Australia for the past 2 years (so I have been informed). If we inform as many people as we can and change the life of even just one person then I will be happy. Kidney disease is increasing rapidly around Australia due to such things as Diabetes and unhealthy lifestyle choices. If we can all do our part to help change this growing trend and get the message out there then we may start seeing a decrease in the need for Kidney TX's.

Would love to hear your feedback.

Kim.

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

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

By Brigid Wing on Wednesday, 13 October 2010
Re: Organ Donation
Hi to all,
My mother is about to celebrate her 40th anniversary of her kidney transplant. She had the transplant in November of 1970 from a unrelated donor at the Royal Melbourne hospital. She is still in good health and her kidney is functioning well. I would be keen to know if there are any other kidney transplant recipients in australia who are at their 40th anniversary.

By Michael Skinner on Tuesday, 14 September 2010
Re: Organ Donation
Hi There Geovanni,
I am 47 and donated a kidney to my son (Then 3) in 2006 (see the log by my wife below"Kelli Skinner") Both my son and myself are doing well since the operation. I get a kidney test done each year and the results are ok.

By Frustrated on Saturday, 10 July 2010
Re: Organ Donation
Hi
New here. I'm keen to find out if I am suitable as a non-directed kidney donation, but am finding it very difficult to see a specialist due to the waiting time for appointments. If there is such an urgency for donations, why do I have to wait so long? Doesn't make sense to me...any suggestions?

By zahira on Friday, 7 May 2010
Re: Organ Donation
My husbands good fishing mate (now 76yo) is, I think, in end stage kidney failure. He's been on Hemo Dialysis for about 4 years. His kidneys failed due to a combination of Diabetes - Insulin dependant and a herbal remedy he was taking. He is frail with a simmering infection in the bones of his feet due to "Sharko's" disease.

His GP has done the paperwork to put him on the transplant list, my husband is willing to be his donor. Realistically, would they consider him for a transplant? Being totally honest, without meaning to sound mean, I don't think they will. Is there a way to find out?

Thanks Z

By Kathie 40 Canberra on Wednesday, 3 March 2010
Re: Organ Donation
I have a Kidney disease which is called cystinuria. I was lucky enough to be invited to New York to the first ever official Cystinuria Meeting with the best experts to teach us and support us it was wonderful. I would like to get in contact withanyone who has cystinuria so we can come together as a group and help each other out with the knowledge we share. Does someone
know how I could be able to find others I feel this is important to make the contact and suport we need to get through each day, they need to know they are not alone and there is hope. Thank you so much..Kathie



By Cynthia on Friday, 11 December 2009
Kidney Patient Issue
An FDA advisory panel just recommended yesterday that the warning label for Covidien’s Optimark and GE’s Omnisca—drugs in the family of medications known as gadolinium-based contrast agents (DBCAs)—be updated to restrict their use in patients with severe kidney disease because of the potential for an increased risk of nephrogenic systemic fibrosis (NSF). NSF causes thickening of the skin and organs. GBCAs carry a strong “black box” warning. This site has good information on this issue: http://www.gadolinium-mri.com/index.html

By Fiona on Thursday, 26 November 2009
Re: Organ Donation
Hi everyone!

I just wanted to post something on here for others considering donating a kidney. I donated my kidney to my husband Darren in July 2007 after nagging him to let me do it for almost 5 years. Since his transplant he has had no rejection episodes or admissions to hospital, which we are very thankful for.

I had never been admitted to hospital before, but having spent almost 5 years around them constantly, was not worried. Spent the night before the transplant apart from Darren as we were in totally separate parts of the hospital (Prince of Wales, Sydney) which was a bummer. :-(

I was given a private room next to the nurses station which my surgeon had insisted on as I was a "very special patient" (God bless him!) so the nurses came and spent time time with me to have a chat when they could, which was nice.

The operation went without a hitch, the only bad experience I had was finding out that my body doesn't like morphine, so spent a couple of days feeling very sick.....but the morning after the operation was out of bed on my own and within 2 days my only pain relief was Panadol.

I was surprised with how little pain I felt afterwards, I was told beforehand that it was a very painful operation, more painful for the donor than the recipient but Darren had a lot more pain than I did, he is a bit of a sook though!

I was back at work in 5 weeks, the only thing stopping me from going back earlier (other than enjoying not being at work!) was the after effects of the anaesthetic, I got tired very easily.

I was left with a 15cm scar underneath my belly button and 2 small 2cm scars from the instruments on my left upper and lower abdomen. It kinda just looks like I had my appendix out, so much for a cool big scar!

So I hope anyone who reads this who is thinking about donating a kidney to someone who needs it will be feel encouraged by my experience.

Cheers, Fi.

By car 1 on Sunday, 8 November 2009
iga nephropathy
Hi All,
Does anyone have a similar experience?
I had been diagnosed with mild iga nephropathy early this year. Now I over a 2 month period I have lost substantial amounts of protein in my urine, it has jumped from nill to 12.5mg/l . I am now on high blood pressure meds. I am in hong kong working and wondering whether the expected time frames of anything getting worse, or next step.I have lost a lot of energy all of a sudden.
Also looking for a good nephrologist and immuno specialist to assist back in australia as the hong kong doctors are not concerned at the sudden jump.Searching for a good second opinion.

By Mallika on Monday, 10 August 2009
Re: Organ Donation
Many thanks Teresa for pointing out the Allocation Protocols for Kidney Transplants. The website describes the method by which kidneys are likely to be allocated within Australia. What we do not have information on are who are the cohorts who are lucky and who get the kidneys within say 3 years and what are the types of people who do not get an allocation and have to wait say 10 and 15 years. If more is known then steps may be taken to address such anamolies. This is the information that is not in the public domain.

By Teresa Taylor on Thursday, 6 August 2009
Re: Organ Donation
Thank you Mallika for your blog on the complexities of the waiting list for kidney transplants.
This is an ongoing issue that many individuals struggle with, but the outcome of eventually getting a transplant is sought to be well worth the wait. Please find this website www.tsanz.com.au/organallocationprotocols/kidneyprotocol.asp which has all the information on how the system works for allocation of kidneys in Australia. I hope this is helpful in your search for understanding and answers.

By Mallika on Wednesday, 5 August 2009
Re: Organ Donation
I am hearing from different people that people of ethnic origin have to wait a lot longer than the caucausians to get a kidney from the transplant wiating list. I wish the whole allocation process is made more transparent so we know what our positions are in the waiting list. It is so frustrating not knowing whether one will get a kidney ever in Australia while we spend all our productive life waiting for it. Why is the process so secretive? Why cant the doctors tell you the truth? I find this so difficult. It feels that I have no future to live for. The distressing thing is that apart from my kidney problem I am very able.

By Soraya Benstead on Monday, 3 August 2009
Re: Organ Donation
Hi my name is Soraya and I'm only 12 years old and I was wondering how I could become a living donor of one of my kidneys or liver. I want to be able to help someone like this so much. There isn't very much information on being a living donor out there but I would really like to change someone's life. Please help.

Soraya

By Mallika on Monday, 27 July 2009
Re: Organ Donation
I was told about 5 years ago that my kidneys were failing and that something needed to be done. Before that I was an active, healthy person. My close family were tested and found not compatible.
I have been on dialysis for over 4.5 years and have been waiting for the phone to ring. I am really scared and nervous that the phone may never ring!! I was on CAPD for all this time and was reasonably OK with it. Just this month I had to move to Hemo and it is scaring the hell out of me.

I hope I get a transplant soon. When I read that some people have waited over 10 years, I feel so depressed. Why doesnt the Govt do something about this tragic waste of life? And the cost of dialysis is not cheap either.

By Wayne - Kidney Health Australia on Thursday, 30 April 2009
Re: Organ Donation
HI Leonie,

Thank you for your blog entry. May i start by saying congratulations on your 38 years of transplatation. I can only imagine that at the age of 13, it would have been a daunting prospect for you to get a new kidney. As you say now, life is about squeezing every bit of it and living life to the full. Here at Kidney Health Australia, we wish you ongoing health for many years ahead.

I hope others on here will read your entry as sign of hope.

By Leonie Ingleton on Wednesday, 29 April 2009
longest transplant in Aust
This is the first time I have gone on line and I would like to respond to the quire from last year wondering who is the longest surviving kidney transplant in Australia. I had my transplant on 20th January 1971 when I was 13 years of age, 38 years ago. I know I am the longest surviving transplant in SA. Several years ago I found out there was a gentleman from WA who had a transplant the previous year and was still going strong. I would be keen to know for sure if there is anyone out there who has had a transplant longer than me. My rejection drugs are prednisolone and azathioprine and as with any other long term recipient, the effects of the drugs is taking their toll. I have fragile skin, bruise easily, have recurring skin cancers SCC, torn ligaments, cellulitus in legs, lymphodema in legs, particularly the leg on the same side as my kidney, hypertension, cateracts done. My bone density is good and managed with medication. Because of the increased risk of cancer I keep regular appointments with different specialists for early detection. While this might sound like transplants cause more problems than they are worth, I have had a wonderful life with my kidney and it is only in the last 6 years that my health concerns have impacted on my life. When I had my transplant it had a 50% chance it would survive the first year. Mine was from a deceased donor too. My kidney will not be lasting me a life time and I need to remind myself to take one day at a time, as I did when I first had the transplant. However long the kidney lasts, it is about squeezing every bit of life out of every day because you will never know when it might end.

By Jenny on Tuesday, 17 March 2009
Re: Organ Donation
Thanks for your response Wayne. Lifelink in NSW have been helpful in providing info on remembrance services for Donor Families and are finding out about recipient services for us. We are interested in speaking with other donor families/recipients to help us make the decision to meet the recipients of my brother's organs in 2004 as we (his sisters and mother are feeling strongly about this). Thanks again, Jen

By Edward on Thursday, 12 March 2009
Re: Organ Donation
Hi,

I am in stage 4 renal failure with my current eGFR at 17. This has fallen quite steadily over the last 18 months or so. I am 40 and expect that some replacement therapy will be required within 18 months or so.

Apart from, hypertension (long term and well managed), gout (which I have suffered for 3 years and which is now also well managed) tiredness (which I hve only really been feeling lately) and a lack of concentration, I feel fine.

I have the blessing of very supportive friends and family and have had many kind offers of donor kidneys.

My parents (both in their 60s) one in excellent helath, the other in reasonable health have each offered to be possibe donors.

While I know that each case needs to be judged on its own merits, assuming the good helth of the donor, is there any age after which donors are generally not selected? Is the kidney of a 65 year old donor likley to be as functional as someone's in their 40s?

Thanks in anticipation.

E

By Jenny on Sunday, 1 March 2009
Re: Organ Donation
Hi, I am the sibling of an organ donor to various recipients. Is there a blog/website where donor families and recipients can investigate the pros and cons of meeting each other. Thanks and best health wishes to all.

By Jane: Health Service Manager, KHA on Tuesday, 17 February 2009
Re: Organ Donation
Hi Rosa, thank you for your enquiry. Gernerally the kidney specialist would be the person to discuss clinical matters. If a person's kidney function is deteriorating to the point of requiring dialysis or a transplant, the kidney specialist after initial discussion often refers the patient to a renal nurse who will then discuss further treatment options in more detail. This includes discussion on different types of dialysis as well as transplantation. Sometimes there are medical reasons why some treatment options are not possible. Only your doctor can provide these answers.
It is wonderful that you have a family member wishing to donate to you and it is good that this potential donor is accompanying you to yur next appointment. This provides you with the opportunity to ask your questions. These may be 'When does your doctor think you might need to commence dialysis?' and 'When would they consider transplantation'. By the sounds of things a preliminary transplant workup has commenced already as you indicated they have performed HLA tissue typing.
In most states you have the right to view your medical records but only in the presence of a medical officer. I am not sure what the case in the NT is.
If you are not happy with the way information has been communicated, may I suggest that you write down your questions for the doctor after reading some of the fact sheets of the Kidney Health Austrlai website and this may prompt the answers that you require. If you are not happy after your next visit you can always request to see a different doctor.
Fact sheets recommended to read are: Chronic Kidney Disease, Heaemodialysis, Peritoneal dialysis, Access for dialysis, Kidney Transplantation and Make the most of yur doctor's appointment. Please click on the link below which takes you to the fact sheet page on the website: http://www.kidney.org.au/ForPatients/HealthFactSheets/tabid/609/Default.aspx
I hope this information helps, Jane

By crazydave on Monday, 16 February 2009
Re: Organ Donation
Why is it that people say that it is unethical to compensate people for giving up an organ which would then save another person's life? People rant on about ethics in this matter but the question is it ethical to let tens of thousands die every year when people would sell their organs for the proper compensation. Given the fact that donors risk complications ranging from discomfort to death along with loss of wages for up to or more than 2 months why do we ask them to do this for free? Also there can be complications with insurability. After these considerations one would ask why anyone but a saint would donate an organ like a kidney, lung or liver. After going through the time-several days loss of work to go through the strenuous screening to be a kidney donor and appropriate research I have figgured that it would take anywhere from $200-$250,000.00 for me to part with a kidney knowing what I do about the proceedure and the life changes I would have to make afterwards. Research donations for yourself and what the risks are and ask yourself why you would put yourself through that for free. What do you think? I think that the obvious answer is to legalize the compensation of donors which would lead to tens of thousands of lives being saved. Yes, it would have to be strictly regulated but it needs to be done and soon. Lives are in the balance. What do you think?


By Rosa R, Darwin NT on Friday, 6 February 2009
Re: Organ Donation
Good day everyone! This is my second time to write in this community bloggers. I am Rosa, who had previously wrote about my CKD Stage 4, with and eFGR of 21. Please read my IgA Nephropathy, kidney biopsy, Indapamide medication blog written last Dec 08...How would you feel after 7 years of going to GP, renal doctor and all of a sudden, you will be told your kidneys are functioning at just 28-30%. All those years of me going to them, and no explanation, about the level of my creatine, or eFGR. Only my last GP told me about the % of my kidneys functioning. A total shock, as I thought all along that it was just high blood pressure!

My questions for clarification regarding clinical action plan is this: When I was re-referred (Nov '07) to the public hospital here, my eFGR was 28-30. By Feb 08, it went down to 21%. I was never told about common complications, and was never physically and pyschosocially prepared for renal placement therapy. When I told the renal counsellor (Dec 3 08) here that I was not given a work out - transplant, she gave me a CD and 2 pamphlets of "Baxter, Take Control, understanding treatment options for living with kidney failure. Who's responsibility it is to informed a kidney patient with just 21% kidneys functioning? My renal doctors, or the allied health, eg. renal nurse or renal counsellor? In my case I have to asked and asked But every time I asks when(?) the answers of the renal doctor is not yet! So last Nov 08 twice before my epigastric hernia operation, when I sensibly informed the attending anasthesiologist about my 21% kidneys, I was shocked and so scared, when they told me, they are saving veins on my left hands for fistula, dialysis... Who's at fault here?

On my Sept 08 checked up, I told my renal doctor that my daughter, and the rest of my family ( son & husband) are willing to donate their kidneys to me. My renal doctor just remarked, "That's good!"" My GP told me there should be a transplant work-up at once when I was re-referred to the renal clinic, because I was already CDK Stage 4 then. On my scheduled renal appt. this coming March 2, I will be coming with my husband who is willing to donate 1 of his his kidney to me. When my husband and I visited our GP, our GP tried to called the renal unit of the public hospital here regarding to asked regarding the present renal'spolicy when a kidney patient has a willing donor. My GP was told to tell me to have my husband with me on my coming renal appt. In Australia when do work-out transplant start? Do I have the right to demand from the renal team, a work-out transplant, a copy of my clinical abstracts, blood and HLA Tissue Type?

I am now experiencing swollen ankles, feeiling tired, breathlessness, itchiness and I always getting up several times during the night to go to the toilet. My renal doctors believe that at 21% my kidneys are still to good to have those (itchiness, experiencing tiredness...). Whereas my GP who I always consulted, told me that every patient is different! Whilst I am not yet on dialysis, (transplantation is my first choice!)my family and I grabbed the opportunity to travel interstates Sydney-Canberra-Tasmania-Melbourne. A week after, I am totally tired, with swollen ankles and was itchy all over. Whilst at Port Arthur, I cannot go on walking, as was experiencing chest pains. I have to hailed a cart that give lift to the elderly and the disabled. One hour after my kidney biopsy last Feb 27, I can't breath, and the attending doctor put gas mask on me for more than 30 minutes, I also shakes and thrushed up and down the bed. I was told it was anxiety. Question is, I was not like this before, so can I ask for a referral for cardiovascular examination? I'd read that 70% of kidney patients died/suffered from cardiovascular condications due to kidney complications. Who will I ask my GP or any of my renal doctors?

To the administrator please help answer my questions. I have photocopied lots of articles and reading materials eg CDK Management in General Practice" from your sites and other reputable sites, like e-medicine to educate my self! I wish some doctor practise humanistic side of medicine when they treat patients! Patients should not classify according to their levels of functioning.

Thank you very much! God bless all of you!

just me,

Rosa

By Kidney Donor's Daughter on Wednesday, 28 January 2009
Re: Organ Donation
My aunty has been on dialysis for 10 years now and she is around 55 and has not had any luck with getting a donor. She was told last year that she doesn't have much more time to wait and they were threatening to take her off the listing, after spending thousands on legal fees she eventually got back on the listing.
My mum only told me on the wknd that she is going to donate to my aunty in eight weeks time, she has gone through the massive testings for the past year and they are a 100% perfect match even though they are a different blood type. At first I was upset with mum cause I was worried about her but now I see it will give my aunty a whole new lease on life. Are there any serious risks that my mum would incur?
Good luck to you all.
Regards

By Megan Green on Thursday, 22 January 2009
Re: Organ Donation
I have had my kidney for over 15 years now. I received the kidney from an unknown donor when I was 11 years old. The disease I had was focal glomerular sclerosis (FGS).
I would love to personally thank the donor family one day....

I have had no issues with my transplant, however it is the low immune system that causes the most problems...infections (i had necrotising fasciitis), flus, gastro etc....
The side effects of the medication are the norm - puffy face, excess hair growth, low bone density, low iron, etc etc but I try and keep out of the sun as much as I can.

I think that Australia should take on the policy where you have to register if you DON'T wish to be an organ donor....

I am blessed with a great family too, and employer. I have 3 monthly appointments with the Nephrologist, blood tests, pharmacy visits... and usually reach my safety net limit for my tablets in June each year.

Dispite the hiccups and the side effects of the medication, I love having my kidney and quality of life....

Good luck everyone!

By Vickie Jones on Monday, 5 May 2008
Re: Organ Donation
I have had my Kidney for 22 years my sister gave me her Kidney and I just talked to a guy today that has had his Kidney for 23 years. I too have had problems with the medication Prednisone. I have done great other wise. I would love too visit with anyone with several years as well.

By PamCollier on Monday, 24 March 2008
re longest surviving kidney Transplant Patient.
Hi,
I have now had my Kindey transplant for 37 years as of 3 July 2008.
I feel very blessed to be able to have had the Kidney for this amount of time.
My renal function is perfect.
Alas the side effects of long term immune suppressant drugs have played havoc in other areas. I was just wanting to know are there any other Transplant people out there of about this amount of years and do they also experience the long term effects of the drugs.

Also can anyone tell me what the longest surviving Kidney transplant recipient in Australia is?

By Simone Eyles on Sunday, 16 March 2008
Re: Organ Donation
Hello,
My little baby boy Joshua has just been diagnosed with Congenital Nephrotic Syndrome - it is a very rare kidney disease, and would really like to get in touch with others who have faced this hurdle and hear their stories, I find there is little or no information available - and would just like to know I am not the only one out there trying to figure this all out.

Thank you

By Samantha Kulkarni on Saturday, 10 November 2007
Re: Organ Donation
My dad has been on dialysis for 22 years on the same fistula. He had a failed kidney transplant in 1989 and is still on the waiting list at age 62. Like Keith I wonder why some people wait 3-4 years for a kidney and other wait 17 years +. Although at times I feel frustrated, I am more grateful that his receives good care at the dialysis unit. Many thanks for all the nurses, doctors and technians in the Canberra hospital. You do a great job looking after my dad. Thank you, thank you, thank you.

By Maria Iacono on Saturday, 10 November 2007
Re: Organ Donation
Hi all, I only discovered this site a few days ago, great idea. I have been on dialysis on and off for about 30 years. I had 2 transplants that both rejected and then the third transplant lasted for about 7 years. I have now back on dialysis for about 15 years awaiting the forth transplant. I’m now 51 years old. I have been very lucky I have not had many complications, but minor things. I feel reasonably healthy at the moment. I work 2 days per week and I have lots of hobbies that keep me occupied - patchwork, decoupage, cross stitch as well as being the secretary of the Decoupage Guild of NSW.
My friends, who are not on dialysis, but have minor health problems, always say to me that they don’t believe when I get the time to do these things and go to dialysis 3 times a week. I also manage to go on holidays once a year, at least! I suppose I am lucky that my mother is very healthy for her age (74) and she does most of the housework, but I help out with the cooking and shopping. I think is because of my positive attitude to life, just take one day at a time. Sometimes I over extend myself and do feel very tired and just do nothing. Anyway, I just try to keep on keeping on.

 
 
 
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Last updated: Oct 2014.