What is going on?

[nephrontom]

hi to all....nephron tom....new member and an RN

My gfr is 18 and I'm symptomatic ( bad fatigue, weight loss, weak, etc ).....I have a matched living donor and we're just waiting for surgical clearance for the the preemptive transplant but now I'm getting "slow down" signals from the center ( St. Barnabas in NJ ), and my nephrologist, who I love. I'm flabbergasted and at a loss. Any info, advice, tea and sympathy is more that welcome. Isn't the idea of a preemptive transplant is to avoid dialysis, or am I nuts? I'm 3 gfr points from frank failure and life, as you all probably know, is no bed of roses at this point. Any input appreciated.

[shash8363]

Hi there! How bad is your fatigue? Are you able to do daily chores? If you are able to slow down on your daily activities then you can continue for some more time with this GFR. I started feeling symptoms towards GFR of 12. I would say just try to hang in there until your transplant happens.

Also do you know why your transplant team is “slowing down”?

Take it easy and keep cruising! Good luck to you!!

[nephrontom in reply to shash8363]

thanks a million! yeah, I can do some household tasks but "life" is out of the question....no hiking, biking, vacationing, etc... I don't want to live at this GFR which will inevitably deteriorate if a viable alternative exists...... for a hundred reasons, and I know the risks, I want the transplant. God bless you on your trek and thanks again.

[Dara3351]

When I had my transplant my GFR was 12 and my creatinine was 3.75. I started on a plant-based diet which definitely helped and I hired a dietitian which was supportive in reviewing my bloodwork and keeping tabs on me. I was not on dialysis and for that I am so grateful. At this point diet is supremely important as is water intake. Hang in there! I said a lot of prayers and it worked! Hoping the same for you soon!

[nephrontom in reply to Dara3351]

Many thanks Dara, and all the best to you. I've got the willing living matched donor, not on dialysis, and I'm willing to accept the risks inherent with the transplant. While I know I could feel a lot worse and be much more incapacitated, I want the transplant and the chance of the life I once knew. Can't thank you enough. Tom

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[Dara3351 in reply to nephrontom]

I accepted a kidney with Hep C , got called within 2 weeks, did a 12 week treatment of Mavyret and show no signs of Hep C! I feel great!

[LisaSnow in reply to Dara3351]

Which center did your transplant? I know not all center does HCV transplantation.

[Alport67]

Have you asked why they are "slowing down?" What are the "signals" that you are receiving? You are so close. I couldn't imagine how frustrated you are feeling. I understand what you are saying regarding fatigue and feeling tired. My gfr is 11 and my creatine is 6. I'm constantly tired and rarely have the energy to do the things I love. It is a struggle but I'm watching what I eat and pushing through it the best I can. My siblings are presently going through the screening process to see if they are a match. The plan/hope is for me to have the transplant pre-dialysis.

I would talk to you transplant coordinator at St. Barnabas and ask; "Why the apparent slow down?" They should be able to answer that question for you. If you are not satisfied with the answer you may want to see if you can have the transplant done elsewhere. I'm new to this, however if you already have a living donor lined up and that person is a match, I would think that you should be able to go to another center.

You are fortunate that you have a donor lined up and are ready to go. I hope you receive your transplant soon. Hang in there and stay positive.

Sending prayers your way.

[nephrontom in reply to Alport67]

Many many thanks... I think they think I'm doing "fine" in their eyes, all things considered. Am I scared about the procedure.... you bet your you know what, but the risk/benefit analysis obvious to me. Best of luck to you!

[lkhenderson]

You need to find out why the slow down. Everyone is symptomatic at different levels. I had a preemptive transplant at 10 and avoided dialysis, which is absolutely the goal. But I was symptomatic at 12-14. Mine got down to 10 based on finding a living donor. We ended up in a paired donation with 3 donors and 3 recipients. I would not let up if you are symptomatic. If you have a suitable living donor and clearance is obtained I would press on and not let up, unless of course your doctors have other reasons which they then must explain. Good luck to you!

[nephrontom in reply to lkhenderson]

Thanks Ike. Just kind of pooped out but not really sick. Will be cleared in mid February for surgery and then we'll see how things go. Thanks for the support and advice. It really means a lot

[Transplant2018]

Nephrontom- I had the exact same experience. Determined to have a pre-emptive tx, I went in and was evaluated and listed as soon as my GFR hit 20. Then everything stopped. The tx center said it was "too early" to even evaluate potential donors as their tests would have to be redone closer to the tx. When I asked why it was too early (I was feeling miserable and wanted the tx as soon as possible) I was told it was because the tx will not last forever so they want to get as much time as possible from your native kidneys.

I had the same symptoms you described - constant weakness and fatigue, lack of exercise capacity - and my nephrologist didn't think those symptoms were being caused by my kidney failure at my then GFR of 18-19. He then tested for other possibilities , e.g., thyroid, but when those results were fine he concluded it must be the kidneys. Because I was so symptomatic he called the tx center and asked them to proceed, which they did. My GFR was 15 when I was transplanted. The great news is that immediately following the tx - I mean when I was in recovery - the chronic fatigue was gone!

So although you probably don't look as sick as many of the tx center pts, keep emphasizing your symptoms. You didn't state your age, but how long a tx lasts is a factor you may also need to consider.

[nephrontom in reply to Transplant2018]

Can't honestly say, other than the fatigue, I feel ill. Maybe the want me to feel crummier before moving forward but, like I said, I think the better/stronger I go into this whole deal, the better I'll do. We'll see what happens. So many variables it makes my head hurt ( figuratively ) at times. Thanks for your time and concern. Tom

[transwife]

We experienced a similar situation. we were hoping for my husband to have a transplant before dialysis, but he had to go on it before all the testing was complete. My son was a match for my husband and it seemed they were "dragging their feet" with the final tests etc. Meanwhile, my husband had to have a stent put in an artery, which set things back again. I think they have their reasons, one being to make sure you are physically ready for transplant, which seems kind of silly if you need one, then you're not well. Hang in there. Hopefully the dialysis will get you to a point where you are ready for transplant.

[nephrontom in reply to transwife]

hi transwife....thanks for the time and input. The only thing I'm waiting for is surgical clearance in mid February from cardiology. Then I'm good to go if cleared so hopefully the whole dialysis issue is a moot point. We'll see. And thanks. Tom

[Drdetroit]

When my GFR was 26 I noticed weight gain from fluid retention. Over the next 2 yrs my GFR fell to 15. I started the tests to get on the transplant list. Shortly after being on the list, my appendix burst & I spent 3 weeks in the hospital & my GFR fell to 7. I immediatly had surgery for a fistula. 2 more months I started dialysis waiting on a transplant 2&1/2 yrs on dialysis before my transplant almost 8 yrs ago. Dialysis actually made me feel better for quite a while. The dietitian told me I was the {star pupil} as I kept my Albumin level {Protein} level above 4 always. I won't lie, I was scared to death through the whole process, but everything worked out. The first few weeks after transplant are no picnic, but it gets way better. Hang in there, & keep your head up. GOOD LUCK!! I'm 68 yrs old & still working

[gardengirl97301]

I was at 10 gfr and then got ready for a PD catheter. I was really tired and my nephrologist and I waited as long as we could for dialysis. 3 weeks after I got my PD catheter installed, I got the call for a kidney transplant and boy was I happy! I've done great. Eat right, drink lots of water and nap when you're tired. I'm 66 and doing great with my new kidney. Soooo grateful! New life for me.