Hi,My husband is doing nocturnal dialysis here in Australia. (nsw) He does every second night because that is all the government will allow.
He started dialysis back in 1980 and recieved a transplant in '85 that lasted 17 years. I have been with since 1980. I have to say back then, because he was young was the best thing to have a transplant. He took his meds regularly, never missed one. and we had 2 children, now grown up.
He has since been back on dialysis for the past 3 years. He wants another transplant. He has however, become a high risk transplant risk simply because he has heart disease ( he had a quad bypass) he also has hepC, with some liver damage. But, he still wants a transplant because of the freedom aspect.
We have recently been told that there is another list here. It is a list for those who have hepC and are happy to receive a kidney from a hep C donor. ( cadavier). We havenât yet said yes that he is happy to go on this list, but I am researching for him, and looking for informationâŚ
There are anumber of options available to him. He could wait on the regular list for a transplant which could take years and years.
He could accept a kidney from a hepC donor. ( they are saying to us when you have hepC, it hasnât been known to cause the liver disease to progress any quicker when recieving a hep C +donor kidney.
Or he could stay on dialysis and not go on a list.
I know it is easy for me to say, I actually want him to stay on dialysis.
I know that sounds mean, but it is only because that is the devil we know.
He however has different ideas. he is a very positive person and is willing to take the risk.
It is his body and in the end I have to respect his wishes and I will stand by him no matter what he decides. I just like to be very well informed of all the options.
So, I was wondering has anyone heard of anyone having a kidney transplant from a hepC donor either here in Australia or overseas?
It is risky with or without a donor with HepCâŚthe whole point of getting a kidney from a HepC donor is to be able to get the transplant soonerâŚ
However the real risk resides on the anti-rejection drugsâŚthatâs where the damage will come from. The immume system will be reduced to a point where the liver degrades more quickly causing a higher death rate for your husband.
I did hear stories of liver transplant recipients who opted to stop medications after a liver transplantâŚthey couldnât deal with the medicine but wanted to feel normal at least for their remaining livesâŚ
yes,it is about getting a kidney sooner. The list apparently is much shorter.
Yes- it is the immunosuppression that will cause the problems. He already has stage 2 fibrosis on his liver. And he risk getting worse by having a transplant. This is what I am really afraid of. Terrified actually.
I have also read about liver transplant patients who CAN stop taking their meds and donât lose their livers. It would be good if this were true for all transplants. However- it isnât.
I want to say to him⌠no I donât want you to have a transplant⌠but I canât, it is selfish of me to do that. And I feel he will give up hope if I do that.
I donât have Hepatitis in any form, so itâs different. However, I can tell you right now that no matter how good daily nocturnal hemo is for me, I would not want to do this without the hope of a transplant coming my way. Hemo is just too mechanical. Iâll take it if I have to, but I wouldnât mind not having to do this every night. Maybe itâs important for your husband to have that hope too.
Pierre
Hi Queenie
I have just got on the NSW list and yes it is probably going to be a VERY LOOOOOONG wait!! But i am with Pierre, i live in hope of a good transplant and a break from âthe machineâ. Yay to Freedom, it is good to have things to hope for to make the future seem brighter. 8)
Ditto beachy and pierre. Why do you want him to stay on dialysis? Thats a pretty harsh thing to say. If he has heart problems then a transplant may be a better option for him. Im not a doctor though so I dont really know. The hep C list sounds like a good idea, but the wait may be longer, you never know.
yes you are both right. I wouldnât take away his right to hope. I would follow what ever direction he wants to take. I am not on the machine so I can only imagine how hard it is for you guys. I know how hard it is for me emotionally and that is hard enough.
HI Amba,
I am sorry that you feel I have said something harsh. Thats your opinion though and you are entitled to it. I was only saying that âfor himâ getting another transplant is very risky. The Transplant doctor has told us that because of Conâs heart disease, liver disease, he is at a very high risk of dying, ( not because of transplant, but because of infection risk, liver failure risk, being immunosuppressed will give the Hepatitis C an extra push of taking over his liver and therefore causing liver failure, or liver cancer. ) The doctor actually said that he wouldnât take the risk, but if Con wanted too he would be happy to list him.
yes all patients under going a transplant take a risk. The risk to Con is higher to start with because of the extra problems. You have to remember Transplant is a âtreatmentâ not a cure for kidney disease, just as dialysis is.
Con had taken immunosuppressant medication for 17 years with his first transplant. This in itself as done damage. He actually lost his transplant kidney because of Cyclosporin Toxicity. It damage the kidney to a point it couldnât function anymore. The ERSD, Dialysis, Transplant, and medication have all taken there tole on his body.
Deciding to have a transplant or stay on dialysis isnât just black and white. There is alot of grey area inbetween.
I wouldnât dare tell him I dont want him to have a transplant, (that would be selfish of me to want to keep here with me, even if it was with doing dialysis for the rest of his life. ) I know it is his decision. But, I am allowed to express how I feel and what I think about it. I donât want to lose the man I have loved since I was 16.
I am sorry if I upset you with my opinion. But, it is just that. My opinion.
cheers Queenie.
I agree Pierre, It is very important for him to have the hope. I am actually sorry I brought this up here now. I just wanted to get the opinion of others simply because I am afraid of losing him. He is doing so well now, after having his parathyriods removed. He walks everyday, he swims twice a week, he is more active now than he has been in years. I just felt ( in my opinion) that maybe he is better not having a transplant, .
These are my thoughts. He wants to be on the list and he will be.
Cheers
Queenie.
Hey fellow Aussie, donât be sorry you brought this up!
It does us all good to talk about it. My hubby has the same feelings as you I am sure. He has seen me on immuno suppressants and knows what they can do to the old body and knows I may well lose a kidney because of my FSGS but we have to give it a try.
Remember they get better at doing these things all the time and who knows what is around the corner for any of us.
It is hard watching someone you love go through this stuff I am sure. I sometimes put myself in my hubbyâs shoes and imagine how much he must be worrying about me and wish I could take away his âpainâ. I am sure he sometimes wishes he could be sick instead of me. You are expressing perfectly normal concerns. Just hang in there girl, you will get through this. We Aussies are a tuff bunch. 8)
thanks Beachy
I know it isnât my place to say I donât think he should have a transplant. And I know it is out of fear that I say it. But, we have been through all of this together. He wasnât sick when we first met. He got sick a year later.
We have been through dialysis, transplant, heart surgery, hepC, had children, back to dialysis, and now the thought of transplant againâŚhell it has been hard!.. to say the very least.
You canât really express in words how hard life is when living with Chronic Illness. ( you would all know this). It is even harder when you have to watch the one you love suffer so much for so many years.
So, This subject is an emotional one for me. I though sharing might help. I didnât want to offend anyone.
thanks for the support. Yes! us Aussies are a touch bunch and we will get through whatever is thrown our wayâŚ
cheers Queenie.
As Iâve said before, I will take the transplant when the opportunity arises - because at my age and with the current waiting list situation, I might only ever get one kick at the cat. However, I do have to say that many people on daily nocturnal do consider the possibility that they might just decide to stay on nocturnal instead. I find this is especially the case among those who have already had a transplant in the past and who know how they felt. A transplant is not necessarily the panacea that many people imagine.
It seems perfectly normal to me to discuss the matter, because people on daily nocturnal feel pretty good, and so they might decide to stick with what is working rather than experiment with a transplant. Most of the time, the question mark is how they will feel on all those anti-rejection and other meds. Itâs a subject that in my experience never fails to come up when two or more daily nocturnal patients gather.
Hi Pierre,
A transplant is a really good option. And if you are relatively healthy then it is of course the better option. The meds are very strong, but most people I know havenât had severe problems with them. There are so many now to chose from, that they usually find one or two that work out well.
I hope you get your transplant soon. Until then sounds like you are doing the best for yourself with doing nocturnal dialysis.
The revival of this thread continuesâŚrecently, the National Kidney Foundation posted an important article regarding the risk of kidney transplants and cancer and discuss transplant recipients attitudes towards that issueâŚfeel free to read the whole article at their website.
The majority of transplant recipients realize that they are now at higher risk of cancer, but this risk doesnât rise to the top of their list of ongoing worries, according to initial reports from a long-term investigation by the National Kidney Foundation. Awareness of the risk of cancer is particularly important since post-transplant malignancies are now the second leading cause of illness and death in long-term transplant recipients. At the first World Transplant Congress, where the NKF survey is being unveiled, more than 85 abstracts are being presented on the subject of malignancy alone.
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My Sonâ wants to do in Home PD Dialysis. I have lots of Concerns about Supplies , Storage Area like how big of a room and how big is the
Dialysis Machine and how do I fit it all in his Room and wondering about all the set ups.
.Still have questions about his medical Coverage and I am up for any advice and others experiences . Advice and experiences Kidney Transplant and
just would like to be apart of the community here. Does anyone know about the
Kidney Transplant Process?
Iâm Researching all the time ,educating myself as much as possible .
I do feel like My Husband and I are Going through This alone.We are the only ones Supporting him and Being his Addvocates and his Voice Please is there Anyone else Going through something similar? Open to talk.
Another option for kidney Transplant is The Paired Kidney Exchange Program.
Researched and I have to share with otherâs.
Itâs for those who donât have same blood match.
Please share with others some people donât know of that option. Thanks
Hi Lesley,
If your son wants to do home PD and you want to get feedback from people that do that, you might want to post in the forum for PD patients.
You could also join the Home Dialysis Central Facebook group which is a closed members only group where you have to answer some simple questions to join. Hereâs the link to that group.
and we had 2 children, now grown up.
I would follow what ever direction he wants to take. I am not on the machine so I can only imagine how hard it is for you guys. I know how hard it is for me emotionally and that is hard enough.
