Kidney transplant 23 years my gfr now is 13 percent but I want no dialysis.

[jennifer24]

Hi everyone I hope everyone is doing well . I writing to you guys for some advice on what should I do. Anyhow, my kidney transplant is 23 years old it's been a nice ride so thankful , but in this pass 2 years it has lost fuction due because of the years. I have a donor already my husband but we are waiting for 1 more clearance and insurance before surgery. My gfr is 13 percent now it was 15 then. 12 currently 13 percent and I'm worried I don't want to go on dialysis but my dr mentioned that if I go below 15 then is time but I dont have any symptoms thank God just anemia. So do you guys believe that I should go ahead with dialysis at 13 percent event hough I have no symptoms like fluid retention edema and ect. Please I would appreciate your help and advice and if there's anyone who is at my level and still no dialysis at 12 percent will appreciate it...

[Tolmezzo]

Hello Jennifer having eligible leaving donor I would avoid dyalisis like the devil. We are all different and I've eared people w/o syntoms at 5 egfr. Being you I would push to get surgery ASAP and no dyalisis at all. rgs

[jennifer24 in reply to Tolmezzo]

Thanks

[DexterLab]

My nephrologist before my transplant said that you need to look at more than just the numbers. You need to look at how the person is doing as well. If you are functioning ok, despite crummy numbers, then you can just motor ahead to the transplant. Good luck.

[PostivelyJo]

I got to EGFR of 4 and didn’t have dialysis . I had symptoms but they were manageable but I was extremely lucky as my blood tests were relatively stable . I was on a lot of bicarbonate to regulate acidity , and a phosphate binder and blood pressure meds. I reckon I was a week away from dialysis but then I got so lucky and a fo it became available

If I were in your position with all I know and have experienced I would try not to over think it , avoiding dialysis for as long as Doctors say you safety can …

The only real control we have , I realise , is in how we respond .

Fingers crossed for positive things

[jennifer24 in reply to PostivelyJo]

Thank u

[GardnerADK]

I believe the GFR number is not the only factor in the decision of 'must' be on dialysis or not. Everyone's blood chemistry is different and all the numbers are taken into account with this question you ask. My spouse had a GFR of 13 when he went into surgery to obtain the kidney transplant almost 6 yrs ago now and he never was on dialysis. He has PKD and his mom and oldest brother had this also. I would get other opinions if needed from other nephrologists. I am glad to hear your transplanted kidney worked so well for you for over 20 yrs. I hope you find the answers you need to move forward in this important life decision.

[jennifer24 in reply to GardnerADK]

Thank u

[GardnerADK in reply to jennifer24]

Very welcome. I am sorry you are going through all this with your kidney. It's been almost 6 yrs and my spouse' first organ is working well, but the medications he takes has been an enormous huge problem for him in how he feels daily. All his doctors know about it, nothing more can be altered to help him. He feels like he's back on chemo like he was for cancer treatments 34 yrs ago. I wish the transplant team spent more time on the low % of recepients of a donated kidney the antirejection medications causing very negative side effects for years. That has been my spouse' experience in all this. His and my quality of life is worse than ever for years now. Again, I truly wish you the best.

[Beachgirl32]

I was like you I didn’t want dialysis but I’m on it now still waiting for transplant . But I did not go on dialysis until my gfr was 8 told myself I still felt good . If you have a donor and they match then I would wait if you are at 13 you should be able to get transplant now hopefully yall will get that clearance I would stay on top of the insursance if you have no signs of toxins I would wait but if the toxins start then that another story

[Bassetmommer]

We really should not be telling you what to do medically .....but, I wish I had waited. I was down to supposedly GFR 7 but C cystine said 11. I felt fine. I had energy and no symptoms. MY anemia was doable. That all changed when I went on dialysis. I know have to have iron infusions and truthfully, I do not feel better. But then I was not bad before.

[Parkerbarker]

Well i was down to 6 % as before that had no symtoms but when i started getting so tired at about 7% ,so I finally started and my nephrologist was worried about seizures but she trusted my judgement and did bloodwork weekly as i didnt gave edema either or bad blood work,only had to watch potassium but everyone is different and my case was rare for being no systoms but when i crashed at 6% ,i went down fast withing three weeks was so exhausted and anemic was bad.

[Redbone55]

Good Morning! First let me say congratulation on LONGEVITY of your kidney!.. I know that there is no easy decision when it comes to Dialysis. I believe that you are in a better situation than most. You already have a potential donor, hopefully it will work out with clearance to where Dialysis will be a distance memory. However, I think at the end of the day, it is a matter of how you are feeling and the doctor's recommendation. Good Luck! Be Blessed!🙏

[jennifer24 in reply to Redbone55]

Thank u

[wind00]

Your experience sounds very similar to what I went through last year. My first transplant lasted 24 years and in the last two my numbers started to drop and I began to prepare for a second transplant. My wife gave me her kidney last July and at that point my gfr was around 13.My transplant team felt strongly that about avoiding dialysis if at all possible and told me that gfr wasn't the only driver, it is also how you are feeling overall. They said that outcomes are often better if you don't have to do dialysis so they wait as long as possible.

On an unrelated note, one thing the surgeon said that really made me feel good was, "there's no reason that your second transplant can't be as successful and long lasting as your first." So far, at least on the amazing return of my quality of life, he was right. Good luck to you!

[ShyeLoverDoctor]

my gfr was 6. Depends on other numbers. If your potassium gets really high you will have no choice. It’s very individual.

[gardengirl97301]

I’ve had my new kidney for just about 5 years. I was just about to go on dialysis. Had the peritoneal catheter put in and then got my kidney! Woohoo! I did not want to do dialysis. I’d go for the transplant first. You can wait to go on dialysis as your number gets lower, but my nephrologist told me that as your numbers get lower, if you crash, it’s really hard to recover. I waited till I was at 10 before we decided it was time to get ready for dialysis. I was having to have iron transfusions and was getting really tired. Good luck and positive vibes headed your way!

[jennifer24 in reply to gardengirl97301]

Thanks I'm getting iron injections but I dont have any symptoms other that I was feeling tire but now I'm feeling better since the iron injections

[Sapphire187]

Everyone is different of course, but my gfr is 13 right now and I’m not on dialysis because my symptoms aren’t that bad. I get EPO injections, IV iron infusions and take bicarbonate for metabolic acidosis. My nephrologist told me she goes by more than the gfr. She also takes into account how you are feeling. My phosphorus and potassium have been in the normal range so far and that makes a difference too. If your labs are fine and you feel fine, I would talk with your nephrologist about holding off on dialysis as long as possible especially since you have a donor. Best of luck to you.

[jennifer24]

Thank u

[3KMa]

At 23 years you must be at least middle aged. Your GFR is bad, no denying it. You have a suitable donor(husband) correct. Then , not to be blunt but, what are you waiting for. Get the 2nd transplant. Get the transplant, get into recovery, and get back to your life. That’s my humble opinion and I WILL pray for you tonight. 🙏🙏👍👍✌🏼

[jennifer24]

I know what u mean but I need to wait for my husband to get his insurance

[BlurpleIsBest]

Hi Jennifer. Congrats on the longevity of your dad's kidney. You've receive many comments so far but I wanted to chime in to share that my native kidney failed when I was 27 and I didn't know I was born with one, which was too small. I'm 54 now and on my second transplant, first from my dad and second from my husband. When I was 27 I went all the way through complete kidney failure, so to a GFR of zero (creatinine was 26 or 27 if I remember correctly!). My symptoms (mainly edema, GI upset, brain fog) didn't really start appearing in earnest for a few months before that and more intense symptoms (serious fatigue, inability to use muscles, intense itching, etc) showed up in final weeks. I was physically active and in good shape and the docs said this helped keep symptoms at bay. Ultimately, if you can avoid dialysis, do. It is super hard on your body, even peritoneal dialysis (which is what I did once I was stabilized). Also, for me, the symptoms I felt as my first kidney transplant was failing were nowhere near as bad as I felt while on dialysis. Good luck on your kidney journey and hats off to your husband. You'll have two heartfelt kidneversaries to celebrate!

[jennifer24]

Thank you so much ...

[Darlenia]

I'm surprised your nephrologist seems to be only interested in GFR figures. My hubby's nephrologists paid very little attention eGFR data and focused primarily on hard lab data regarding creatinine, BUN, etc. The day he started on dialysis, his figures in those areas were eGFR 6, Creatinine 8, BUN 114. His blood pressure (240/120) forced him into dialysis when nothing could bring it down. Without that happening, he may have been able to stave off dialysis for two additional months. I'm wondering if your transplant is quitting slowly or quickly. I would pull my lab reports and check the trend and then start a conversation with your team (including the transplant center nephs, if possible). It's important to be aware and informed. Your voice and your interests matter. I'm trusting that the sun, stars, and moon align just right for you and you get another transplant sooner than later and no dialysis is needed.

[jennifer24]

Thanks for u response my husband is my donor just waiting for his insurance to get figuered out that's what's holding up surgery that's why I'm worried about dialysis .

[Tashikat]

Hi….congrads on 23 great years!!! My kidney of 15 years is going down, with gfr varying from 10 & 13 & creatinine has been almost 5. My doc said the same thing as Gardengirl, he did not want my kidney to crash & my recovery would be hard. So he is starting me on dialysis. I too have a donor lined up, but with her testing it could be months before she donates, & then a few weeks/month after that for me to receive a paired donor. All the best. Go with what your doc recommends.

[Benjamin124]

Hi there, it sounds like you're facing a challenging decision regarding your kidney health. Based on your situation, it might be beneficial to seek a second opinion from a nephrologist specialized in transplant medicine.

They can offer insights into whether starting dialysis at 13% GFR, despite no symptoms, is the best course or if monitoring with your current management plan is appropriate.

Each case is unique, so discussing your concerns with a medical professional who knows your history well can provide clarity.

[frebusmaxwell]

I would suggest that you hold tight and not go to dialysis quite yet. I was under 10 and with a good diet I was able to make it until my transplant.