Quality of Life of Transplant vs PD

[65_and_wondering]

I am a 65 year old married male with two adult children and two grand children. I have been on PD for about nine months and found it NOT to be a significant burden. I am contemplating going on the Kidney Transplant waiting list.

I am interested in input on Life Style Positives and Negatives of transplant life vs PD life. Any facts, thoughts, observations or other input would be appreciated.

[Mgt8]

Hello,

I can't emphasise enough what a wonderful difference it is to have a successful transplant.

I am 57. I was on dialysis for just over a year and as I had polysistic kidneys, they were very large and one had to come out before I could be even considered for transplant, so with that and a couple of other things, it took me about a year to even get on the list.

After recovering from a couple of opps, and spending about a year on haemodialysis, which I did at home, I got the call about 9 months after being listed.

It was a strange feeling with lots of mixed emotions. Even as I was speaking with the surgeon, I wasnt sure I wanted to go through with it. Remembering my last operation I dithered. What if it didn't work and I'd been through all that again.

Well, at first it didnt work. I had to have several proceedures and even after being discharged, I had to go back as things still weren't right.

Eight months later, I feel great. It was worth every operation, every biopsy, every uncomfortable night, (and day) every injection, every painful memory.

Not only am I free to do what I want every day. I feel as if I am 30 again, as I have so much energy.

I would say to anyone who's not sure about a transplant, it's not an easy thing to do, and it may take a little time to get right but the eventual benefits are worth it all.

Hoping it works out for you.

Best wishes,

Margaret

[kidneytransplan in reply to Mgt8]

Hello Mgt8, What meds are you taking?

I do thank God I have a beautiful kidney but I can't totally appreciate it until or unless I can get off the meds. I am 10 1/2 months post transplant and working out daily ,blood work great etc. but still experiencing the side effects of Tacro and Prednisone. Both are on low doses and gradually being reduced. I MAY get off all meds but until that time I don't feel 30 years old. The side effects have a definite effect on my life. Some may subside yet some are lasting.

I wish I had been better prepared for these effects. Had I been I could have handled things better.

[Mgt8 in reply to kidneytransplan]

Hi there

Just had a look at your profile. I too take tacro (5mg x2 per day) used to be on 12mg! It gave me the shakes and hot flushes, better now. Also prednisone, 5mg am. Again was on 20mg and my body didn't like them at all. The worst for me was mycophenolate, it really upset my stomach but now reduced to 250mg x2 per day, and this seems to suit me. I wonder if there are alternative tablets that may suit you better. It may be worth asking the question. There are others I take as well; asprin, blood pressure, sodium bicarb, ranitidine.

Am taking it for granted that I will be on these as long as my kidney lasts. (Its far better taking a few tablets than dialysing, well it is when they get the mix right.)

I did get depressed when I first got home as I expected it to work straight away, and i didnt expect to feel so tired for so long, but it got better in time. Didn't find it easy at all to begin with but it's only now, 8 months later that I'm feeling the full effect of the wonderful gift I have been given. Don't know how long my kidney will last but I'm certainly going to appreciate every day that it does.

Best wishes to you, hoping your consultant gets your tablet mix to where you can feel the difference.

Margaret

[Damigi28]

Hi, I am 9 months post transplant. I have mixed feelings about this. I felt really good 3-4 months post op. Now I don't feel good every single day. I have headaches every day. Seriously every day. I am tired most of the day. I have gone back to work and I feel exhausted a lot. No one explained beforehand how bad the side effects of the medications were likely to be. I am still bloated and the steroids make me puffy too. I have been depressed (which I have never been before) and extremely moody. These are also from the meds the doctors tell me. They constantly are changing my meds. I am under lot of stress because I am having a hard time getting the meds I need covered by insurance (even medicare) because they all want you to take the cheapest kind of meds. I tried to take the meds they wanted and had bad reactions to them. But, it was such a battle to get the formula that helped me the most, that I had to resort to taking what they wanted me too after months of appeals. I have started rejecting the kidney twice already. It seems like all I do is run back and forth for labs and appointments. It is so busy in the transplant clinic, that I spend most of my day there. I really don't feel any better than I did on PD dialysis. I am praying things will get easier. I am grateful, but I was not prepared to feel like this. I just wanted to give you the realization of what other possibilities post transplant were. I never expected to feel like this. Best of luck to you whatever you decide.

[threeiron]

Really there is no question getting a new kidney is no comparison to PD. For all the hoops you have to jump through a kidney is worth it, your life opens up . No more cramps or adjusting bags to get fluid right I seriously advocate getting on the list. Hope this helps.

[Falkenhayn]

Your experience will depend on how well your new kidney functions and how you respond to the medications. In my case, my transplant has been completely successful and I have had no complications, no bad sensations from the graft, and no negative reactions to the medications, other than the initial facial puffiness that comes with the early heavy dose of prednisone and the later, long-term rounding of the cheeks that is caused by the cyclosporine. In my case, that effect is actually a plus, since I was too hollow-cheeked before! The transplant has so far lasted for 13 years, and the creatinine level now varies between 120 and 140, so I should hang on for a few more years.

I would say that while my quality of life before the transplant was 20% of normal, now it is 90% of normal, with the loss being mainly the result of the excessive interference of the transplant follow-up team, which does its best to treat me like a cripple and keep me imprisoned under their control by requiring too many appointments. They really hate to surrender their power.

[Mgt8 in reply to Falkenhayn]

It DOES feel like they are interfering sometimes but I'm sure I wouldn't feel quite so well without their regular tests and tweaks to the medication. Also, they once found my potassium was far too high from a regular blood test and I had to be rushed into a&e for treatment. Without that consistent surveillance I could have risked problems with my heart on that occasion.

My philosophy is, do the appointments, listen to their advice, then go and live life to the full.

Best wishes,

Mgt

[65_and_wondering]

Thanks