Pre Dialysis Transplantation - Kidney Transplant...

Kidney Transplant Patient Support

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Pre Dialysis Transplantation

NKFCEO profile image
13 Replies

A patient with a declining EGFR reading should be offered a number of choices regarding future treatment when renal replacement therapy becomes essential - however these choices should not only include the type and method of dialysis - but also the possibility of pre- dialysis transplant. A patient who can go straight to Transplant is likely to be fitter and do better than a person who has dialysis first. The NKF wants to know if patients are having this possibility suggested to them - Please start a discussion or ask a question - lets all hear your views.

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NKFCEO
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13 Replies
mrspick profile image
mrspick

this should be offered to patients who are fit enougfh as it would save the NHS a vast amount of money surely?

Methusala profile image
Methusala

By "pre-dialysis transplant" I imagine you mean living donor transplant. Any patient heading toward ESRF may not have the time to wait a few years before the offer of a cadaveric transplant and have to begin dialysis.

Susieteebee profile image
Susieteebee

I have polycystic liver and kidney disease and am almost at dialysis point but still hanging on

and doing ok. I. need a simultaneous liver and kidney transplant obviously from a cadaver donor. After months of tests last year I was put on the liver/kidney transplant list. So most definaty I have been offered pre-dialysis transplant . Both my kidney and liver consultants are hopeful this will happen. As am I :)

mikeb profile image
mikeb

My wife had a "pre-emptive" transplant (i.e. pre-dialysis) with a kidney donated by her brother back in 2007. Unfortunately, it was unsuccessful but Leicester General hospital were very happy to offer this option and we were, in turn, happy to pursue this route whilst my wife was some 3 years from finally requiring dialysis.

Kel1959 profile image
Kel1959

In June 2009 I found out I had Stage 4 CKD and would need a transplant. I was extremely lucky that my husband was able to donate a kidney and I had a pre-emptive transplant 10 months later at Leicester General Hospital. My consultant told me that having a pre-emptive transplant offered the best outcome for the patient, and I am very thankful this option was possible for me.

tfc5 profile image
tfc5

our unit at Portsmouth certainly try for pre- dialysis transplant especially when a living donor is in place

is there a 'rule of thumb' about how much before you need dialysis you can take advantage of an offer of a living donor?

I guess you cant be sure exactly when dialysis will be necessary to keep you alive and I guess some people take dialysis later than others ... but could you have a transplant 2-3 years (or maybe more) before you need dialysis to stay alive ?

manbreak profile image
manbreak

My 2nd transplant is now failing eGFR is at about 15% my unit in Liverpool have been great and have started tests on my husband in the hope that he can donate his kidney. They are hoping that I can have it before Im ill enough to need dialysis.

I have had my 2nd transplant for 24yrs this was a cadaveric kidney I have been fit and well for most of this time. My 1st kidney was a live donation from my Mum this worked for 8yrs.

I have suffered with kidney failure for the last 30+yrs since I was about 16 and I think the fact I have only spent 8mths on dialysis in all that time has kept me so well in my case it shows getting a transplant asap is the best way forward to a fitter life..........

vickywaterloo profile image
vickywaterloo

I am pre-dialysis and was informed of the possibility of pre-dia transplantation. My sis offered and I am to have my op in 2 weeks. My arguement has always been, why wait? Why not op now why I am still relatively healthy? Some docs agree but others seem to think a life on dialysis isnt too bad!

hlwallis_123 profile image
hlwallis_123 in reply to vickywaterloo

I asked my consultant the exact same question. He told me the reason why they want to prolong your own kidneys and not give you a transplant straight away, is because a "kidney transplant is not a cure" it is a long term home therapy. In other words, it won't last forever. Apparently on average a donated kidney lasts 15 years?

IN 2004 Guy's Tx team tried to get my transplant done pre-dialysis but sadly, my body had other ideas and packed up before expected so the work-up on my donor wasn't complete. Definitely should be an option though. Tx

bonniehyde profile image
bonniehyde

Am currently waiting as my brother is worked up to donate a kidney,he has had all his tests and we are now just waiting for a date but this is becoming a problem as leicester have asked for all the tests which have been done but still no date and my brother expects a baby in september so need it done before then but it should definately be offered to all patients

Jez42 profile image
Jez42

I had a transplant last August & my Mum was the donor. I was desperate to avoid dialysis if possible & my Mum met the living donor team at the earliest opportunity. Even though she lived 5 hours away the living donor team were brilliantly organised, managed to arrange multiple appointments on the same day & ensured that she was 'worked up' and ready to go in good time.

Unfortunately, my consultant was not nearly so organised & seemed to take it for granted that I would need dialysis for a while before the transplant. The situation was exacerbated by me losing my renal nurse half way through my work up. As it turned out my mother was ready a good 3 months before me (which I was told afterwards was 'very unusual & shouldn't have happened') and as my GFR had declined to 5% the surgeons thought it was necessary for me to have 4 sessions of dialysis to make sure I was fit enough to have the operation.

The whole process was delayed by my consultant failing to refer me to a gastroenterologist when I first informed him that I had had an upset stomach. He finally referred me six weeks after I had first told him & as there was then a 2 months waiting list the whole process was needlessly held up.

Your consultant should be ensuring that every outstanding issue is cleared up as part of a necessarily thorough and lengthy work up process - if they are not then the whole process can be delayed by months causing unnecessary stress, anxiety and cost!

In the end I changed consultant (there had been other problems too!) and I only wished I had followed my instincts and changed consultants at the beginning of the process - it is vital that you have faith in your consultant and transplant nurse because unless you're going for a second transplant you haven't got a clue about what's going on, which can make things seem daunting to say the least!

After a few scares (Mum getting sepsis on release from hospital & me acutely rejecting her kidney - the only time you don't want an effective immune system!) we're on the mend, although the process is very slow and mine has some way still to go.

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