| Author |
Message |
alfy
Member
Username: Alfy
Post Number: 3
Registered: 03-2012
| | Posted on Wednesday, March 21, 2012 - 09:15 am: | 
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Hi All:
I plan to receive a kidney from a live donor next month.
This is preemptive surgery. (In other words, I am not on dialysis but renal function hovers around 17 percent.)
I would like to hear from those on this list who have also had preemptive surgery, and can discuss energy levels and recovery time post transplant.
Doctors have been telling me different things. Some say I will NOT notice a change in energy, others say I will immediately feel more energetic. Also, how long did it take for you to settle on a regimen of lower-dose anti-rejection drugs?
Thoughts/comments? |
keith elliott
Member
Username: Keith_elliott
Post Number: 232
Registered: 11-2010
| | Posted on Wednesday, March 21, 2012 - 11:41 am: |
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I had a pre-emptive tx (ie before dialysis) from my wife a bit less than 8 years ago when my function was about 16% - so pretty similar.
If you're anything like me, you'll feel great to start with (especially if you get given steroids!) and a lot of things like sight, hearing and even rate of tooth plaque build up! - which you may not even realise were slightly sub-optimal - may well be better too.
After a month or two I found that energy levels were much the same as pre-transplant.
One thing I would say is that if you get the impression from your docs that it may be worth waiting another 6 months or so before the tx then it may be worth considering. I was so keen to get on with it that when they suggested that to me I ignored the advice ... maybe with hindsight I should have taken the chance .. but it's impossible to know of course!
I think that if I had my time again I would be tempted to wait until about 10-12% function .. who knows, I may not have got that low for another 3-5 years .. or it may have been 3-5 months. One benefit of a pre-emptive tx is that you can, to some extent, do it when you want and at short notice if needs be.
Anyway .. whatever happens, I hope it all goes well for you
take care
Keith |
alfy
Member
Username: Alfy
Post Number: 4
Registered: 03-2012
| | Posted on Wednesday, March 21, 2012 - 12:01 pm: |
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Thanks for the feedback, Keith.
In hindsight, why do you believe you should have waited another several months before going through with the transplant? |
keith elliott
Member
Username: Keith_elliott
Post Number: 234
Registered: 11-2010
| | Posted on Wednesday, March 21, 2012 - 12:59 pm: |
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I was freaked by having to have a transplant and so kinda panicked myself into doing it asap .. but there was no hurry really... I just wanted to get it done well before dialysis .. my donor was my wife so she wasn't going to donate to anyone else.
Looking back I now don't see any downside if I had waited a bit more (if things got bad we could have just got on with it immediately) .. and maybe the fact that I knew I could have one whenever I wanted might have reduced some of the stress and helped preserve function or slowed down the deterioration - who knows!
I now think really that preserving overall lifespan (adjusted for quality of life of course) .. through periods of being transplanted and periods of dialysis is what's important .. no need to rush into stuff if there's no urgency 
But there are no relevant facts with hindsight (no proof what would have happened if I had waited etc) and no regrets about getting on with it when I did
Interesting decision to have to make though
take care
Keith |
Gene
Member
Username: Gene2x
Post Number: 23
Registered: 11-2011
| | Posted on Wednesday, March 21, 2012 - 08:48 pm: |
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Hey Alfy,
I got my transplant before dialysis and I see no reason to regret it. The longer you wait the more your natural kidney function will deteriorate and you will most likely feel worse. Why put yourself through that. My function was around 11-12% when it was done. You may have seen the thread on fatigue that I started. I'm 8 months post transplant and still suffer some fatigue. It comes and goes. I can't pin point why. But I am 66 and on a bunch of meds. Maybe it's just age. I was looking for other's opinions and experiences. I do feel better most days and felt better within a month or two of the operation, which itself can lay you low for a while. I think the one thing that I took from this forum for the two years I monitored it before my operation is that everyone has a singular experience. Your age, physical condition, eating habits, exercise habits, meds, prior sicknesses, etc. can cause you to have an entirely different experience than someone else. I'm on Prograf and Cellcept. My Prograf level was 5mg twice a day right after the TX. It's now 3mg in the AM and 2mg in PM. The Cellcept was 500mg twice a day and is now 250mg twice a day. I think it's great that you have a choice. Most people don't. Good luck!
Kidney Tx - Aug 4, 2011
VA Pittsburgh Health Care Center
Follow UPMC non-steroidal protocol
Live donor was my radio operator in Vietnam
1/6 match |
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Gene
Member
Username: Gene2x
Post Number: 24
Registered: 11-2011
| | Posted on Wednesday, March 21, 2012 - 08:51 pm: |
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One thing I meant to add to my comments is that you have to keep in mind that the health of the donor is as important as yours. If the donor develops an illness or condition (eg. high blood pressure) and becomes ineligible to donate, then you've missed a big time opportunity.
Kidney Tx - Aug 4, 2011
VA Pittsburgh Health Care Center
Follow UPMC non-steroidal protocol
Live donor was my radio operator in Vietnam
1/6 match |
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alfy
Member
Username: Alfy
Post Number: 5
Registered: 03-2012
| | Posted on Thursday, March 22, 2012 - 10:54 am: |
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Thanks, Gene. I'm beginning to learn that, indeed, everyone "has a singular experience" with transplantation. |
