No more home hemo

My Fresenius has been sitting silent and neglected for 10 days. I’ve had no dialysis at all since… TRANSPLANT!

I also suffered a catastrophic computer crash, and I wasn’t able to get online since before the transplant.

Can you believe that? My call finally came in Monday August 14, and I was transplanted in the wee hours of Tuesday morning. I waited 3 years and 11 months on dialysis.

So far so good. The kidney started producing urine almost immediately, and it’s still going like mad. They sent me home last Tuesday, exactly a week after the surgery. The kidney came from a 20 year old. That’s all I know.

For those of you still waiting, don’t get discouraged. Be patient, and stay healthy. It seemed like a long wait, but in hindsight, 4 years is not that long. It’s so great being off dialysis though.


I was wondering where you were. Well that is great Pierre congratulations

You have a new birthday. I hope you will come by here still even if you are now a urinator.

That is great news Pierre and I am very happy for you. Do continue to stop by your input has been greatly appreciated here.

Congratulations, Pierre! Can’t wait to hear how all is going for you. Do you have any ideas yet for how you will live life differently? Please keep us posted on your journey :smiley:

That’s wonderful news, Pierre! I wish you and your new kidney all the best. :smiley: You’ll have to write and tell us how different your life is.

First of all, CONGRATULATIONS!:slight_smile:

Some of us may think that a kidney transplant is not worth it, but the truth is its all worth it! At the same time some of us are not fortunate to get one…on the contrary, whether kidney transplant or not we really love to live life…

Pierre, that is the BEST news I have heard in ages. Congratulations and big hugs all round. Funny, I only “know” you through the power of the keyboard but i am still sitting here crying big tears of joy for you!
Way to go, no more Nocturnal for you! :smiley: :lol: :stuck_out_tongue:

Congrats on it taking. I could throw sour grapes at you for that. I shouldn’t though, I am truly happy that it is working for you. Take good care of yourself and your new component.

This was the best news of the day Pierre! Are you the first member of this group to get a translplant? It is so great that someone who has been in the trenches with us will get a taste of freedom. My family and I fight this struggle every single day. We are as happy for you as we would be for our loved one on dialysis. Knowing one of our group made it to the next level, it almost feels like it happened to us, too. At this point, we are just so happy for the opportunity of daily dialysis. Glad you had that and now you can really be free. God bless!

Congratulations, Pierre! That is terrific news. I hope that your experience with a transplant experience will be a good one. Please do stop back and let us know how you’re doing.

Congratulations Pierre!!!

Our prayers that it will be all OK for 120 years!!!

hope that you will still from time to time log in here. Your explanations have been a real help to us. My husband has the fistula but yet no dialysis, the doctor let us go for vacations for 5 weeks. Of course was very static because he cannnot do too much, but no crisis.

Again all the best and thanks for your well taught answers

Congratulations Pierre! All the best!

Thanks everyone. I appreciate your messages. So far, it’s going very well. All my almost daily bloodwork is right where they want it. My creatinine is steady at 130 umol/L. Seeing as mine was 110 before I ever had kidney disease (back when I was a spry 23 year old), 130 isn’t bad at all. I feel so much better, and, I’m still so thrilled to be “free” at night that I spend most of the night up. Well, the 20 mg of prednisone a day probably has something to do with that :slight_smile:

In case you’re interested, I take a total of 22 pills a day, but a few of those are multiples of the same pill. There are actually only 11 different pills which are directly-related to the transplant, and a few of those I was on already anyway. So, I think it’s not as bad as most of us imagine before we get there. Surprisingly, no side effects at all so far. I just had a bit of nausea the first week, that’s all, and a dose of Gravol took care of that in a hurry. I have no idea where those stories about 140 pills a day come from. Maybe in the distant past.

My anti-rejection drugs are tacrolimus (Prograf), Cellcept and prednisone. Contrary to popular misconception, the dose of prednisone is pretty small. I’ve already been down to 20 mg a day for the past 3 weeks, and within a few more weeks, I should be down to 5 mg. I really don’t understand what the big fuss is over the “non-steroid protocols”, because 5 mg is almost nothing. Why take a chance with experimentation? When they gave me that big pre-surgery dose of pred (800 mg in my case), I felt nothing unusual whatsoever.

You know what? Buttonholes are very short lived when you don’t use them. Mine were totally gone within a week after the transplant. Now there’s just a faint little round scar.

No regrets, but it’s only week 3. It’s not all rosy, of course. Having been on daily nocturnal hemo for a year and half after 2-1/2 years at the dialysis centre, I’m actually on a way more restrictive diet now with the transplant. On nocturnal, I could pretty much eat whatever I wanted within reason. With the new kidney, mostly to counteract some of the potential drug effects, I have to follow a no-added sodium diet, plus low cholesterol, low calorie and low fat diet. But my potassium tends to be low, so I can eat all the bananas I can handle. And of course, instead of any fluid limit, it’s the opposite. I have to ensure I drink at least 3 litres per day. This sounds like fun, but it’s actually hard to do. That’s a lot of water in just one day… and it’s like this every single day. And it has to be mostly water, because soft drinks and juice would be too much sugar.

One big advantage… I no longer have any interest in the big debate between NxStage users and everyone else :slight_smile:

Well, to be honest, it will be interesting to see how this all develops. Everyone knows that a transplant is not a permanent thing. But I’ll certainly take it over dialysis while it lasts, no question about that. My big Fresenius is still here, for another 2 months, just in case I should need to return to it. I guess I would need new buttonholes, though.

Best of luck to you all, and if you’re waiting like I was, patience. Your time will come, and then it will be like you never waited at all.


On nocturnal, I could pretty much eat whatever I wanted within reason. With the new kidney, mostly to counteract some of the potential drug effects, I have to follow a no-added sodium diet, plus low cholesterol, low calorie and low fat diet. But my potassium tends to be low, so I can eat all the bananas I can handle. And of course, instead of any fluid limit, it’s the opposite. I have to ensure I drink at least 3 litres per day. This sounds like fun, but it’s actually hard to do

Glad you are feeling so well Pierre and are free from the machine. I didn’t know transplant patients have such a strict diet to follow as we have not gotten into studying transplants yet. What foods are you not allowed to have with low cholestorol/calorie/low fat? And 3 liters sounds like a lot to drink.

There’s nothing specific I can’t eat or drink. They just want it to be generally low fat, no added sodium, low calorie. This helps avoid some of the potential side effects of the various drugs. As time goes by over a few months and the dose of prednisone is reduced, it will become easier. It’s not a big problem, just a change in eating habits. My diet was the usual restricted one when I was dialyzing in-centre, but for the past year and a half on daily nocturnal, I had the luxury of being able to eat virtually without any restriction. The downside of that was that I did gain some extra weight I didn’t need.

I follow the advice I’m given as part of the initial education program and the excellent on-going follow-up. The last thing I want is the weight gain associated with prednisone.

Pierre, Just curious do you have to do anything with the machine for the couple of months it sits? Like run a heat disinfect or put in a preservative.
The spare RO I have I have to do a minnecare clean and put in fresh preservative every month. Wondered if the dialysis machine itself needed something done.?

Hi Marty

No, they didn’t tell me to do anything to it. By the time I came home from the hospital, it had already been sitting there unused for more than a week, and if I were to have to go back to it, it would be due for its 3 month maintenance anyway.


Well Pierre I hope you don’t have to use it for a long, long time! What was the antigen match on your transplanted graft?

Believe it or not, I have no idea. It all happened so fast it never occurred to me to ask about that. I got the call, went to hospital, was greeted by the nurses and the nephrologist, and I was into the testing and other prep within minutes.

By the way, if anyone is interested, a little over a month after the transplant, I’m already down to only 15 mg of prednisone. My tacrolimus is also down to 2 mg in the morning and 1 mg in the evening. Cellcept remains unchanged at 1000 mg twice a day. I know that for all of us when a transplant is still in the future, the biggest concern we have is about the drugs. Well, honestly, it’s not that much medication, and it’s certainly nowhere near as bad as we imagine. With the ultimate goal of being down to 5 mg of prednisone a day, that’s such a small dose that I really don’t understand people being so desperate to be on a prednisone-free protocol. Why take a chance experimenting with the new kidney like that?

Hooray for daily hemo keeping me in good health for this transplant! I gained a lot of my fitness back after I switched from conventional in-centre hemo. I was simply able to gradually exercise a lot more than I could before the switch.


hi Pierre, I haven’t been on home dialysis for a while. Even though I am alittle late I would like to say CONGRATULATIONS!.. on recieving your new kidney. From what I have read things have been running smoothly for you. I wish you all the best… enjoy the freedom as I am sure you will. :slight_smile:

cheers Queenie.