Kidney Transplant /Dialysis: Greetings i have... - Vasculitis UK

Vasculitis UK

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Kidney Transplant /Dialysis

gibson100 profile image
4 Replies

Greetings

i have had MPA for about nine years now and have been a member of the group most of that time.With the help of my excellent doctors I have managed to outrun most of the nasty effects of Vasculitis but I fear the disease is finally catching up with me.

I went to my regular quarterly review/test clinic yesterday.Whilst I feel OKish I was told by my renal consultant that my kidney function has dropped below 15%.As a consequence I have been referred to the Low Clearance Clinic.

Rather shockingly I was told that I would need to prepare for a kidney transplant in the next couple of years.Or if that is not practical long term dialysis should my renal function deteriorate much further

I wasn't expecting this news and I am having a little trouble getting my head around the prognosis.It's a pretty major thing for me and my family.I am a positive sort of guy but this is a bit challenging.

I was wondering if anybody else has had ( or is having) this experience or something similar.I am 64 and live in London.

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gilders profile image
gilders

Hi,

I'm recently on the other side of what you are going through, having had my kidney transplant last March, due to damage from vasculitis.

I'm 42 and was diagnosed with Wegener's Granulomatosis when I was 17. At the time, I had dialysis, which along with treatment and my youth, helped to get me into remission and my kidneys recovered quite well.

Since I was 17 I have had numerous relapses/flares of vasculitis, each time permanently damaging my kidneys further. I had hoped that at some point I would stop having relapses before my kidneys were so severely damaged that I would need transplant/dialysis.

When I was in my early 30s my Dr told me that my kidneys were at a stage where they would decline even without relapsing with vasculitis (my function was low 20s). I was devastated at the time as I had been clinging on to hope of no relapse equalling no transplant/dialysis. Although I had always known, since 17, that having no more relapses and not needing a transplant in the future was HIGHLY unlikely, it really stung when my Dr confirmed that my kidneys would not last.

In between relapses my kidney function was stable, but once I hit 18% my function slowly continued to drop. So I would expect that with your function being 15%, it will continue to decline.

I would suggest that you look in to all the options of various dialysis methods. Although I think transplant is best, it's not always an option depending on your health. The other reason to look into dialysis options is that a match for transplant may not happen for a long time, or you may even decide dialysis would be preferable than the transplant operation and all the medication needed for the life of the transplanted kidney.

Any questions, please feel free to ask on here, or message me directly.

gibson100 profile image
gibson100 in reply togilders

Thank you for taking the time to respond to my post.I really appreciate it and your comments are very useful.

i think you are correct to suggest that I get used to the idea of dialysis.By the time I would really need a transplant i would be creeping towards the cut off age of 75. And frankly if donors are in short supply I would rather a good kidney went to someone much younger.

Can I ask...did you have dialysis prior to your transplant and if so for how long?

And how do you feel now? Are you back to something like normal?Although f you have had Vasculitis since 17 i can see it would be hard to remember.

best wishes,

C

gilders profile image
gilders in reply togibson100

Please don't rule yourself out a transplant based on your age, it's all down to if you are healthy enough that general anaesthetic would be safe (mostly heart health, if you have breathing issues, etc). You will be looking to get a transplant done asap when you hit 10%. I'm not wanting to worry you, but you're only 5% away from that figure, so there is a strong likelihood you will need dialysis/transplant before you're 75.

There was an elderly gentleman who had a transplant while I was in hospital for mine. He was a little over 75!! The reason being the 75 cut off is for joining the transplant list, not at the time of operation. I've seen him in clinic a few times and he has been happy with his decision to have a transplant. Donors are in short supply, but as far as I know, the length of time you have been waiting and the younger you are, push you towards the top of the waiting list (as well as who have the best matches), so I would not feel guilty about joining the list at an older age.

My donor was my father who was 67 when the operation happened.

"Did I have dialysis prior to transplant?" I had somebody check the house for suitability, went to seminars about different dialysis choices and visited the haemodialysis ward. I was interested in learning everything I could about my options, but always had the thought that "I've got potential donors, so won't need dialysis". In clinic I told my Dr that I would prefer Peritoneal dialysis if it came to it. He made me an appointment with the PD ward and I went to have a look around (as I'd previously done with Haemo ward), after having a quick look around, the nurse said "OK let's have a look in the book to choose your operation date". I explained that I had not agreed to any operation and continued to refuse dialysis. Due to my many comorbidities and the inefficiency of my local kidney transplant coordinators, it took about 3 years for the operation to occur. The pressure grew more and more to have dialysis even up to the point where I was told that the surgeon may decide to only operate if I have dialysis the day before the operation, to help my recovery (if I had have been receiving a deceased donor kidney then this would have been a necessity as they often take a little longer to "wake up" and the stress of the operation would, most likely, finish my original kidneys off ).

So the quick answer is, apart from my brief period when I was 17, I did not have, but realistically needed, dialysis before the transplant.

"Are things back to normal?" The quick answer is no. But this is a complicated question to answer. I'm certainly not back to how I was the last time I was "normal", as I only see my true Normal as being before I was diagnosed with vasculitis, which was when I was 17 and being 42, no, I do not feel like a 17 year old :)

I certainly feel better than those last couple of months before the transplant. I have many other conditions, Heart Failure, lung damage from vasculitis, loose disk in my back, sleep apnoea, painful joints and truly MANY more, so even without my kidney issues, I am never going to feel "normal".

Compared, to say, when my kidney function was around 15%, although I still don't have very much energy, there has been lots of other little benefits that having cleaner blood (from a working kidney) is responsible for, such as no attacks of gout since the transplant. Plus you quickly get used to your current "norm". For example, if I could flick a switch to feel just how I did when my function was 15%, perhaps I would suddenly realise how much better I actually am now without realising.

I'm certain if you ask this question to 99% of transplant patients they will tell you that they feel AMAZING now, so please do not let my situation influence you as it is not the norm. Even if my improvement is only minor, not having dialysis was my overall main concern. I don't want to scare you about dialysis, but I just know for me personally, dialysis is not something I think I would handle mentally. So I am certainly a happier person and much healthier versus dialysis.

The decisions are all yours, but I have not come across anyone, at any age, that hes regretted having a transplant. I'm sure there will be some somewhere, but they must be strongly in the minority.

One final thought for now. Peritoneal dialysis was my preferred choice if I had to have dialysis. But what I worry about locally is that whenever I went to seminars they seem to constantly sing the praises of PD and explain the disadvantages of HD. I am happy to hear experienced professionals tell me their preferences, but I felt that people were being pushed towards PD and think this was due to the fact that they had already ran out of room for in-hospital dialysis and think that this was effecting their presentation. So I would do your own research and speak to people on dialysis forums to help you decide (and me of course).

Best wishes.

Essex-jill profile image
Essex-jill

Hi

I was diagnosed over 20 years ago with Vasculitis aged 39 years of age. I already only had one kidney due to congenital defect. I have had numerous infusions of Rituximab over the years and I usually only stay in remission for approximately 9-12 months. I’m being treated at Addenbrookes in Cambridge and live in Suffolk. I’m a retired nurse now.

Unfortunately my kidney function has been declining over the last 15 years but I managed to keep it at 23-19% function despite numerous infections until May2019 when it dramatically declined to 9% following a bad urine infection.

I then began the process of my partner being tested as my donor and thankfully his a match and we hope to have the operation in March.

I was hoping to avoid dialysis but in September I had to have a neckline inserted and commence hemo dialysis that month. I was unable to have peritoneal dialysis due to prior abdominal surgery. I was so frightened of starting dialysis but it has made me feel less tired and nauseous. I’m doing 4 hours twice a week.

Please ask any questions you wish to me on here or privately and I’m sending my best wishes to you

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