Preemptive kidney transplant experience and results

[hope1419]

Everywhere I read, everyone agrees that a preemptive transplant from a living donor is the best you can hope for when you have stage 5 kidney failure. I would like to hear about your experience if you went through transplant before needing dyalisis. What were your GFR, your BUN and your creatinine levels? Did yoi feel any better after transplant? How did your life change? Did you develop many sude effects? Bottom line, Was it worth ir or do you regret having transplanted preemptively? I ask all these questions because I have postponed my transplant for about 2 years with a GFR less than 15. I am wondering if I should keep waiting since I am fairly stable, or go ahead and get transplanted.

[horsie63]

Personally I wouldn't wait. I go today for my first app with the transplant center at KU Med. I'm at about 15 eGFR and not on dialysis yet and hope I can get a preemptive transplant. I'm tired a lot but no other problems but even so I don't plan on waiting until they happen if I can help it.

[hope1419 in reply to horsie63]

Thank you for your insight. Good luck with your appointment. Bring a list of quesrions for them.

[Palmtreeguy]

I was in your shoes and definitely- 8 months past transplant - very happy that I did. Yes, a transplant is hard, as is the recovery , but I feel so much better than the brief time I was on dialysis ( 5 months). Remember also, dialysis does only a small amount of what your kidney does or is supposed to do.

[hope1419 in reply to Palmtreeguy]

True. At whst test lecels did you have to go on dyalisis?

[Palmtreeguy in reply to hope1419]

When it had dropped to a GFR of 17, I made an appointment with the Transplant Center (Dartmouth Heath in NH). While process of become a transplant candidate proceeded, I was basically told to go to dialysis - they needed me to be in better health to survive the transplant. So I did. Dialysis simply cleans out the blood - it does NOT do all the body regulation that healthy kidneys do.

[Oceansideup]

I had my transplant 14 months ago. I think my GFR was around 15, creatinine was 1.7. Don’t remember other labs…I was sooo tired all the time but did not want to go on dialysis. I did my research and, like you, read that preemptive transplant was the way to go. It made sense to me.

Recovery, especially early on, was busy - lots of appointments, and chart keeping of vitals/meds/weight, etc., (plus I agreed to be in a 2 year study). But the hardest part for me was getting it done during a pandemic. It was really isolating, socially. It still is to some degree, but better now.

I am having some issues lately with more GERD/asthma symptoms than usual (but I had both issues before transplant). Not sure if this would be the case anyway or if my medication is contributing but we are working on figuring it out.

Despite this, I have no regrets about getting a preemptive transplant. I felt dramatically better, almost right away. There were no complications and the kidney worked immediately (my brother donated).

I did not realize how sick I was because I had gotten slowly used to the tiredness, lack of appetite, brain fog, leg cramps, and protein aversion. After transplant, I was eating a normal diet, my head was clear, and my kidney worked. It sounds silly but I remember after getting the catheter removed, peeing on my own and being thrilled that my pee was normal! I grinned, yelling thru the bathroom door to my husband,“Hey! My pee is yellow AND it stinks!” This made me so happy. My urine had been mostly clear and comparatively odorless for months. Now, all those toxins were finally getting cleared out of my system. Funny, the things you remember.

You are right to seek out the stories of others as you go forward. It’s good you are researching yourself about it so you feel more informed. It’s a big decision so the more information you gather the more confident you will feel about your decision. I am hoping you have docs you trust that can answer any concerns you have about the risks/benefits of waiting given your unique, specific medical status.

Wishing you all the best moving forward.

.

[hope1419 in reply to Oceansideup]

Oh My God, your anecdote is so enlighting. I have always been happy whrn I se emy pee clrsr because that is what doctors tell me it's supposed to look . The more clrar thr better becsude you sre hydrated, but of course, if it's too clear, toxins are not comung out! That mKes so much sense. Thank youbso much for sharing your experience. I t gives me perspective. You do get used to things as they progress slowly, and you don’t realize how bad you sre until you are better.

Thanks.

[horsie63]

I did not realize clear pee was a problem as like hope1419 I'd assumed it was better. When I did ultramarathons one thing we always looked for was dark urine as that indicated dehydration.

As for the appt yesterday, holy cats. Lots of information, lots of meeting the "team". They took 21 vials of blood for all sorts of tests, chest xray and CT scan of abdomen. I have to get an echocardiogram and a stress test. That's all left on the list. They do require Covid vaccination at KU med but I'd already got mine. I just need to finish the 2nd Shingles and I want to get the 2nd booster but have to wait to Oct 1. My brother is going through the process of seeing if he is eligible to give me his but if not I'll take a deceased donor. I'm kind of excited/anxious about the whole thing but really would like to avoid dialysis and to feel better.

[hope1419 in reply to horsie63]

I am glad your first transplant team visit went well. It is a lot. I have ro go through it once a year, but every time, you understand a little better. Review the information they give you. Anakyze test results, and be aware of things you’ll need going into transplant. I am noe readinf a lot about why rhey offer medicare and why you basicakky have ro enroll in parts A and B regsrdless of having private insurance. Bottom line, they deop some benefirs after 30 months post transplant. It is my understanding that if you have medicare part A and B, they cover thise cosrs after that until you get back on your feet. (Still learning, pretty confusing stuff) . I also need ro get more testing done before reactivating in the list. Good luck with your process.

[TeacherMommy]

I had the same dilemma. I was very worried about finding the right time for a transplant to get the most time with my native kidneys but not go on dialysis. I was terrified of the idea of dialysis!

One consideration is that the wait for a kidney can be very long. The wait for a deceased donor in my region for my blood type was 4-6 years. I knew I had family willing to get tested. What I didn’t anticipate was that all of them were rejected for one thing or another. All middle aged and seemingly quite healthy, but the transplant team is very strict about who can donate. I put the word out and had some friends willing to be evaluated as donors (which is a very strange and humbling experience). A friend ended up being my donor (I am 1 month from transplant). It took well over a year from beginning of her evaluation to approval. Then surgery was postponed for three months because, despite being careful, we both got covid.

By transplant, my GFR was 15, creatinine 3.6 (originating disease IgA nephritis, I am 46 and otherwise healthy). My creatinine had started going up more quickly over the last 6 months or so. The last 6 months before transplant I felt pretty awful - exhausted (anemic for 2 years, even with epo injections), no appetite (I lost 10 pounds), always slightly nauseous, and anxious about the unknown that I couldn’t control.

When we were both finally approved, I asked my nephrologist if I should go ahead. He looked at me like I had lost my mind (kindly though) and said emphatically yes! I am glad I did. I felt better right away and, as someone else said, realized how sick I had been.

That said, the post-transplant has been emotionally challenging as well. I worry about every blood test and I am extremely anxious because I may be having a rejection episode or infection. I will find out tomorrow when I get more labs and go to the clinic for another follow-up. So, transplant was not a total panacea. However, I am very glad I did it when I did, and I have read here that things will most likely be fine and even out over time.

I have been so grateful for this forum as a place to ask questions and hear the experiences of others. Best wishes on your decision and path ahead. We are all here to support you!

[hope1419 in reply to TeacherMommy]

Thank you for sharing your story. I identify myself with it in so many ways. I bet it is emotionally loaded to care for the new kidney. I feel it's like a duty, as someone sacrifice a part of them so we can continue living. So, I feel I will be compelled to care for it not just for me, but to honor my donor's gift. I have read about how meds can also cause you to feel anxious. Hoefully, concentrating on the benefits will help. I am thankful for this group as well, although, I sometimes have to filter what I read because some of the postings are scary. Then, you read inspirational stories that show you the light and the possitive things that can happen after transplant, and how it'sbetter than dyalisis. So, you get hope again.

Thank you for your input and your support. How long sgo were you transplanted?

[TeacherMommy in reply to hope1419]

I am one month out from transplant. I hear you on the scary stories. I try to avoid those because I will worry about the “what if that happens” possibilities. I do go back and look at those if I am wondering about something specific that is going on.

Wishing you the best in making a decision.

[Herkidney]

getting a pre-emotive transplant was absolutely the BEST decision for me. I think my GFR was around 10 at time of transplant. I didn’t even realize how sick I was until after recovering from the surgery. Sure, there will be some side effects from the medication, but I would choose to go through the transplant again and again. Absolutely no regrets or concerns. I feel great and I can do anything that I want to do. I do take pre-cautions with Covid and am fully vaccinated and for the most part avoid large crowds but that’s it. I got used to taking the medications very easily and have adjusted to the new normal. Best of luck with your decision.

[hope1419]

Thank you do much for your responses. This inspored me to go ahead with transplant.

[steeens_]

I received an unexpected deceased donor kidney when I was at about 21 gfr. The healing and getting used to the drugs was a process that was extremely tough. However, I would never take it back! No almost a year out I feel like a new person. I don’t Albee’s to sleep 15 hours a days and I feel like I can finally live my life. I would highly recommend, it was the best thing that could have possibly ever happened to me. Sending good vibes your way

[LongIslandGirl114]

I’m 3 months post transplant and so happy that I had it before needing to go on dyalisis. My sister was able to donate to me. My GFR was 15 and creatinine was 5.4. Was always tired and had no energy to do anything. The recovery is hard but well worth it, I’m still very tired and have had so side effects from all the meds butI happy I have a new lease on life.

[wheezoids21 in reply to LongIslandGirl114]

Hi. Im in the same position as you. GFR 15, CrCl 3.3. ive gone through the whole transplant listing process and have a voucher program kidney arranged. My doctor says when I consistently feel awful, theyll give the go ahead for the operation. My concern is that I have a pretty high pain threshold and the disease has progressed so gradually that I'm just used to feeling constantly under the weather. How will I know when sick is too sick, without having to take sick time just to wait for a donor for another few months? I keep being told it will probably be soon. Very frustrating.

[zookeeper54]

I did it at 14 gfr I wanted to feel better and I was lucky to get oner in July