Delay transplant?

[gilders]

I am at the early stages of, hopefully, obtaining a living donor. My eGFR is currently 16% and drops as low as 14%.
As far as I'm aware, transplant before dialysis has the best survival rates and this is what I would like. The reason why I'm not sure whether to press on for a transplant ASAP or wait is because my renal function has never had a steady decline where it can be estimated how well the function will be in the future.
Therefore my kidney function may have stabilised around 15% and stay that way for years, or it may drop off completely tomorrow.
I would have thought getting the transplant ASAP was the best choice except for one problem. If the transplant is not successful I will lose my remaining 15% and immediately be on dialysis.

[beckums70]

How often are you monitored for you GFR?  I stayed at 15% for about 10 years before I started to decline, but when my function did start to decline it went fairly quickly.  Not overnight, by any means.  It was a matter of about a year that I went from 15% to about 6% and started dialysis.  If you have a living donor I wonder if you can put it off as long as you and your donor stay up to date on all your blood work and health exams, etc..?  I wouldn't get a tx or go on dialysis a day before I absolutely had to.  With a living donor it seems like you'd have time to get the transplant later but before you would have to start dialysis.  I don't know/?

[gilders]

Thanks for the reply Beckums70.
It varies how often my eGFR is monitored, but approx every 6 weeks at the moment.
When I had a home visit from the dialysis team I asked if it would be detrimental to my health and life span if I was to delay dialysis as long as possible. He said it would be detrimental to delay dialysis, but never explained why.
I see 2 nephrologists (because one specialises in my main illness). One seems to be dragging his heals and gives the impression that my 16% function is adequate, the other is more proactive and wants everything in motion, be it dialysis or transplant.

Obviously, I don't look forward to surgery or being highly immunosuppressed and certainly don't want to be tied to dialysis, so would like to delay it as long as possible......but not if it's bad for my health.

[MooseMom]

The choice may not be yours, rather, it may be your donor's.  Has your donor been completely cleared for donation?  If so, what guarantee do you have that s/he will still be cleared for donation a year from now?  Will your donor be willing to go through all of the testing at some random point in the future?

[iolaire]

-- edit as MooseMom suggests my questions could also apply to the donor.  What happens if you wait five years just to find the donor can not donate or has developed their own medical issues...

Are you healthy otherwise?  I'd be less worried about waiting if you were healthy. 

I think its a fair concern to worry about getting the transplant "to early."  i.e. if its going to function for 15 years on average do you want five of those years to be a time where your existing kidneys were still functioning...  What I don't know is if that concern has any basis in reality. 

But I guess you run the risk of being a good transplant candidate now and later having something else crop up that makes you a more risky candidate.

[MooseMom]

All I know is that I didn't wait.  I felt pretty well at 14%, but since I had already spent two years on the transplant list, I jumped at the opportunity when I got the call.

[coravh]

I get that you want it done more quickly, but why would a problem with the graft guarantee you going on dialysis? I know that some of the drugs can be hard on a kidney, but not necessarily so. The bottom line is that at 15% kidney function, you are not well. You may feel ok, and it's not like living in dog-years the way it can be on dialysis, but you are not currently that healthy. Your body has adapted but it is slowly breaking down due to the lack of proper kidney function. Knowing what I know and how I feel post transplant (compared to a year on dialysis and a total of about 25 years pre-dialysis), I would get the living donor kidney asap.

[justagirl2325]

The transplant team just talked about this with my husband this week.  He's currently on dialysis (he was at 9% when he started and felt very unwell).  They said the transplanted kidney takes over all the function in the body and the other two left behind will shrivel up and die.   So yes, if he is transplanted and ends up back on dialysis he may not have function left.

[DialysisGoneFOREVER]

You're taking a chance by waiting. As long as you have a healthy donor get him/her evaluated and get the transplant! You know you're on the road to kidney failure so get it over with as long as you have a healthy donor!

[beckums70]

There is actually research that shows that beginning dialysis before you are down to 7% can actually prove to negatively affect your prognosis.  My Nephrologists wouldn't even consider starting me on dialysis until I was below 10%.  I really felt pretty good at 15%, but when the decline started the fatigue was unreal.  I could have gotten a transplant much sooner if I had chosen to go that route, but because of insurance and other financial constraints I had not choice but to wait. 

I dreaded dialysis but it hasn't been even close to how awful I imagined it would be.  I am hoping that the same will be true for transplant.

[SooMK]

I was reluctant to go forward with my transplant since I didn't feel sick. My neph encouraged me to get it done since I had a living donor. I'm glad I did since everything fell into place perfectly. As others have said, you don't know what might happen in the future so you have to work with what you know. You know that your CKD isn't going to go away. I had been dreading the antirejection meds but the regimen has not been a big deal for me after the first year or so. The gift a donor is offering you is so huge and so precious that to wait too long seems ill advised. Months before my transplant I fortuitously met a young woman with a transplant. She said it would be fine, it was like living a normal life. Although in retrospect these were words of the young, I am forever grateful for her reassurance and she wasn't far off. Bad things do happen but so do good things. I wish you the best.

[gilders]

Thank you all for your advise. It mostly sounds like - don't delay and go get the transplant from living donor immediately.
Just to be clear - I have 3 potential donors and do not yet know if any will be a match.

Iolaire's point - "if its going to function for 15 years on average do you want five of those years to be a time where your existing kidneys were still functioning...  "  is one I've already considered. Each period between relapses/flares of Wegener's Granulomatosis (the cause of my renal failure) as increased over the last 20+ years. My last period of remission (where my kidney function was stable) went on for 8 years. I am currently about 6+ months in remission. If the trend continues I should have a good 8 years+ of stability of my main illness and renal funtion. That is why I have some reservations of getting transplant done ASAP. But I can't guarantee the trend will continue and now my kidneys are only at 15%, it might not be my main illness that pushes my kidneys "over the edge", but something as simple as a bad cold/virus....therefore I guess transplant ASAP is the best choice.
I already have immature, odd shaped red blood cells. The likely cause is from approx 15 years of Azathioprine. I hope I don't have to start taking it again after transplant.

I really would like a definitive answer to the questions "Is my current 15% function having an adverse effect on my lifespan?" (If so, then I WANT dialysis/transplant immediately) and "would dialysis or transplant increase my lifespan at the moment or would it just help with the symptoms I'm suffering from?" (If dialysis would help my syptoms, but increase risk of stroke, heart attack, etc then I'd rather delay it and cope with the symptoms).
I know most advice seems to be to concentrate less on what's best for lifespan and more on what makes your current life better, but I'd much rather chose an option that allows me to live as long as possible and then I can concentrate on making that life as enjoyable as possible.

I see my nephrologist on Wednesday, I'll see what he as to say.

[iolaire]

Each period between relapses/flares of Wegener's Granulomatosis (the cause of my renal failure) as increased over the last 20+ years. My last period of remission (where my kidney function was stable) went on for 8 years. I am currently about 6+ months in remission. If the trend continues I should have a good 8 years+ of stability of my main illness and renal funtion.

One thing to ask about is if the kidney damage will continue on its own or just as a result of flare ups?

I ask since in my case my kidney damage was long ago but they continued to decline slowly since the damage.  My kidneys were damaged (explained like scarring of the kidneys) in the early 1990's from lupus which has been in remission since.  They continued to decline over the next 20 years and it only be came serious around 2007 when it started impacting my blood pressure (which inurn damages the kidney more).  That started the quarterly nephrologist visits and dialysis by the end of 2013.  The up side of this is I'm on dialysis with some residual kidney function that allows my body to still control fluid and maybe some of the lab work.

[gilders]

iolaire, your story is very similar to mine. I am hitting just over 20 years since Wegener's Granulomatosis first damaged my kidneys and I am now suffering from blood pressure issues, severe fatigue, gout, etc.
Although Wegener's and the subsequent flare ups have caused most of the kidney damage, my nephrologist did tell me that in the unlikely scenario of me never having another relapse, my kidney function will still slowly decline.

I'm pleased to hear you've managed to achieve remission for 20 years. Is there a chance you may be in permanent remission (if there is such a thing)?

[iolaire]

severe fatigue, gout, etc.

Does the severe fatigue mean you are close to dialysis?  I was fatigued for years but it was quite bad at the end.  On the weekends it would be breakfast then maybe a nap.... not so say that I don't still do that sometimes if I don't sleep well and I've worked a lot that week...

I'm pleased to hear you've managed to achieve remission for 20 years. Is there a chance you may be in permanent remission (if there is such a thing)?

I don't think there is anything permanent, but I view it as such.  I've been off meds for say 16 years now and probably would have been of earlier if I didn't go to college and start seeing un-invested rheumatologists.  I view myself as positive and not a worrier so I don't really stress about the chance that the lupus will become active - if it does come back I'll have ample time to worry about it then.  One positive is as time goes by the medicine and disease understanding improves so hopefully the experience in treatment will improve.

PS I love Google for spell checking put in something like "desieses" and it spits out "diseases"!

[gilders]

Just had appointment with nephrologist so thought I'd update.
I should mention that I am in the UK under NHS care.

My nephrologist has told me that the NHS will not fund tissue match tests for all my potential donors as it's too expensive. He thinks the best donor will be be my father (even though he's 64). I really wanted to have a living donor transplant before I went on dialysis as it has the best success rates. My biggest disappointment is that my Dr thinks I'll be on dialysis before I get the transplant. This is not because he thinks my kidneys are rapidly deteriorating, but because the process of transplantation from start to finish takes such a long time on the NHS.

So in answer to my original question of should I "Delay transplant?"  it's now quite clear that I need to get things moving towards transplant ASAP. Unfortunately there's nothing I really can do to speed up the process. I foolishly thought having a few potential donors should mean it was unlikely I'd need dialysis.

[kristina]

Hello gilders and welcome,
... Please find out more information from your nephrologist because the given information you mention "does not sound right"
and please clarify the transplant information etc. with your nephrologist.
Could it be really true that "the NHS will not fund tissue match tests for all your potential donors as it's too expensive" ?
Would it be not much more expensive if you need year-in year-out three-times-weekly NHS-dialysis-treatments?
Best wishes from Kristina.