I'm new to the community and would love to hear advice from others about preemptive kidney transplant. My GFR is in the 16-17 range, creatnine 2.9 and I'm still feeling pretty good but since my living donors tests are about to expire, my transplant center is wanting to schedule the surgery now. Anyone have experience with having the transplant surgery before they actually were feeling super sick?
Help Please!: I'm new to the community and... - Kidney Transplant
Help Please!
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DivabeticLeslie
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I do not have experience myself but my neighbor had a cadaver transplant at GFR12 and not on dialysis. The thought was he would do better with it than waiting. The sooner you can get it done the better.
Thank u!
I do not have direct experience either. My doctor tried to set me up for a transplant before dialysis but it did not work out. The logic was that the body is stronger and can handle the operation with a higher rate of success and long term viability of the transplant.
My two cents would be to schedule your transplant sooner than later, especially with a living donor, because you can feel fine one day and the then feel really bad in the span of a day. Without any rhyme or reason. This is not medical advice, just my opinion since even on dialysis I worsened for no reason before my transplant.
Thank u for ur input...I'm really at my wits end trying to figure out the best plan. So good to hear from people who have been thru it
My eGFR was 15 and my creatinine was 3.1. I was tired all the time, but I was getting up at 3:30 for work and not getting to bed early enough. I had a bit of brain fog which I attributed to having gone off my ADHD meds as part of a clinical trial. I was overweight which didn't help, but I thought I felt fine.
Then I got the call for a deceased donor transplant, and I took it. I couldn't believe I got the call, and if it was a mistake and someone else was supposed to have been called, I didn't want them to figure that out until AFTER the kidney was in my body! I know that sounds selfish now, but I didn’t have any living donor prospects.
That was five years ago and it was not an easy road at first. The kidney I was given "took a hit" according to the surgeon, so I had some challenges. I'm finally feeling good. That would not be an issue in a living donor situation. Statistically, a living donor with a pre-emptive recipient is the best situation. My younger brother got his first kidney pre-emptively from his wife.
Both my brothers said their brain fog lifted immediately. My younger brother is running, cycling, playing tennis and pickle ball, at least one activity every day. My older brother walks (bad knees) but still plays tennis as well. He was on dialysis for 18 months first.
Get all your ducks in a row and do it as soon as it is mutually convenient. You will be surprised at how much better you feel after you've recovered a bit. Best wishes!
Thank u for sharing! Guess my real trouble is it don't feel badly now and worry I totally will feel terrible afterwards, considering the drugs involved. I've been stable for 5 yrs...hard to pull the trigger but know that eventually things will probably get alot harder. Thank u again for responding
Yes, had a transplant before I was far enough gone to require dialysis. Five stars, highly recommend. It's better to get the new organ earlier and save the damage to your body. It will be 25 years since my transplant and still going strong.
Thank goodness! Love to hear that!!
Hi,
I was always told you don’t realise how sick you are until you get a new kidney. I think you get use to feeling a certain way like tiredness and brain fog etc. I spent 8 years on dialysis before my transplant. My advice would be do the surgery now , dialysis can damage your body avoid it if you can.
Good luck
Thank u! I have def been told I'm just used to not feeling great so I don't recognize it. Not sure about that but it's a def possibility
You build a tolerance so you can't quite tell. Yes, transplant sooner is better. Good luck!
I had a pre-emptive transplant from a living donor almost six years ago when my eGRF was 15. My transplant center took the opposite approach from yours as I was told to wait until my eGFR was lower in order to get the most time out of my native kidneys. I was not super sick but had extreme fatigue, couldn't exercise, had brain fog and was sleeping far too much and never feeling rested. I had the transplant and felt so much better immediately afterwards - as another person said, you don't realize how bad you felt until you feel better. You want to do everyting possible to avoid dialysis: my advice would be to go for it!
Thank u for the encouragement!
my EGFR was 5 Creatine 689. I must have been a week away from dialysis when I got mine magical gift. Weirdly it was only in the last month that I suffered with symptoms. Stay present. Your journey is unique .
I meant unmanageable almost intolerable symptoms.
Good luck
GFR of 5??? Omgoodness I cant even imagine. Crazy u weren't super sick!
Bicarbonate of soda apparently …. Kept me off dialysis. I was told not to worry and to go by symptoms not blood tests. I was so carefully monitored . Put my faith in my team …. But yes … 5 is low isn’t it.
Best of luck on your journey
I got down to GFR 6 and oh yes super sick. I’m angry my doctor made me wait so long for dialysis, as much as I understand no doctor wants their patient on dialysis.
Don't wait any minut discharge any doubts and go for pre-empive! This is my recomendation!!!
Hi Leslie - I received a kidney from my friend and was about the same place you are with the numbers. I felt okay and could have gone longer without a new kidney, but it is better to do it when you are feeling well. You will recover faster and tolerate the immuno drugs much better than if you are not all that healthy. . I had my transplant in Jan 2023 so I am coming up on 2 years and I am very happy that. i am healthy and doing so well. Hope you do the surgery now rather than wait and have to go on dialysis which weakens you and could possibly give you problems with rejection. Good luck to you and your generous, brave donor.
Thank u for sharing, it means alot. I believe everything u said is true and maybe it's a better plan while I'm strong and reasonably healthy. When u read about people struggling with the post op drugs tho, it really makes u question the timing of everything. Thanks again!
The medication dance never ever stops because your body will always want to reject the kidney. I know one man, who goes as “Grateful Bob”, who attends a support group with me. He’s never had any trouble at all with the operation or the meds, but I have never ever heard another transplant patient say this.
Welcome to this forum! My husband (62) lived with his kidney disease for a few years before becoming mildly symptomatic. He has never been on dialysis. He began experiencing a chronic rash with severe itching, which is a symptom. This is when he had the discussion with his doctor about a preemptive transplant and it was agreed that it would be a good idea. I'm not sure what his levels were, but I don't think his GFR ever got below 20. His living brother who lives in MN was a perfect match. The kidney was removed in MN and flown to NKY where it was transplanted successfully. That was almost 3 years ago.
He recently had to be in the hospital due to severe dehydration brought on by chronic diarrhea. They determined it was related to medication toxicity, which I discovered from this forum is not all that uncommon. They tweaked his meds and he's doing great.
Knowing what I do now, I would absolutely have a preemptive transplant if available. I hope this helps and wish you the best on your journey.
Thank u for ur kind words! Btw, medication toxicity sounds scary as hell! Hope all is well now and it wasn't too bad
I wanted to get mine preemptively, but Covid stopped it. You don’t want to get it to soon, but you do want it before you go on dialysis.
Most people have good stories soon or 18 months after they receive their kidney transplant whether on or not on dialysis prior. My spouse has not experienced a good day yet and never on dialysis, fairly healthy in life 25 years prior to GFR was 13% and he received his kidney transplant 6 yrs ago 11/28/18. First 14 months were very difficult including a low grade rejection. After that he finally had good blood labs, but then covid19 arrived with all that entailed for everyone. We met with his transplant dr two weeks ago and talked to her for 10 min. how my spouse is still waiting to feel well to do anything. His experience has not been good due to medications he must take to keep organ from rejecting and they have been changed in type and doseage with out positive results. His quality of life is extremely low. THis doctor said she had heard this happening years after transplant with some people. She wishes there was a way to screen people whose bodies cannot handle the antirejection medications beforehand. She had no suggestions to help us. For us we really thought in time things would improve in how he feels every day, but it has not. I find often people who are not having the positive results that this gifted organ gives to many people do not speak up with their truth. I truly wish you all the best in your choices. Transplant nor dialysis is a cure to having kidneys that do not function well. Take care of yourself. Make sure your support system around you are able to help you too. Everyone's journey is different.
I was so sad to read of ur husband's journey. Those drugs scare me to death as well. Once u have a transplant can u go back on dialysis? Not that anyone would want to, I'm just wondering what the plan going forward would be?
THanks for your caring spirit DivabeticLeslie. My spouse never was on dialysis prior to transplant. Right now there are no changes happening., but all his nephrologists know about his health and quality of life issues have not improved at all. About 6 weeks ago on this Healthunlocked blog there was a wife who wrote about her husband who had a kidney transplant about 5-6 yrs ago with similar problems being on the anti rejection medications as my spouse. He chose to stop taking the drugs and told her he felt so much better. I am hoping she will write back to everyone what has occurred to her husband in this very serious choice. From reading this blog since May 2019 and writing on it myself, I find that seldom do I read ongoing for many years without resolution problems like my husband has experienced. WE both wished the transplant center would have been very bluntly forthcoming with what 'some' people experience after transplant for years . FOr us it was the strong emphasis on the rejection of the organ and nothing else.
Yes. I can understand ur frustrations. How on earth do u deal with the ramifications of being sick all the time vs stopping ur anti rejection drugs, knowing what awaits u. I can't even fathom. I'm so very sorry this has happened. So, no advice from the transplant center?
No advice from the transplant center dr we saw on 11/6 on how to improve his quality of life. This center we found out 6 days later on the nightly local news that it is closing along with some other clinics affiliated with the major hospital in Burlington VT due to finances.
Dialysis is life support plain and simple. You get so sick you either need a transplant or dialysis to live. Plenty of people have their transplant fail, and must do dialysis to live while they wait and hope and perhaps pray for another donor to come along.
I agree. Both dialysis and transplant are "treatments"; one's biological organs are always the best. Granted, there are dark sides to both treatments - yet dialysis is the worst according to my spouse who has experienced both. And then people can chose to check out too - by discontinuing working with what keeps one alive (dialysis or transplant) and accepting death. That happens far more often with dialysis patients, I'm sure. With regard to that option, I'd do everything in my power to gather a competent team of doctors (psychologists, therapists, nephrologists, etc.) to help turn the boat around.
I was on dialysis for 11 months and 3 weeks.
I have had my transplant for 1 year and 5 months and 12 days or so.
Interestingly, I’ve been hospitalized 5 times since my transplant.
I was never hospitalized on dialysis.
While on dialysis, I was taken to the Emergency Department once, after I felt ill after a session, released after a few hours.
Since I’ve had my transplant, I’ve gone to the Emergency Department 8 times.
On dialysis, I never stopped driving. A few weeks, I did have a friend pick me up after treatment.
Since transplant, I’m guessing at least three month’s total where I’ve had to take Lyfts because I felt unwell.
Transplant still beats dialysis any day of the week, forced to go to a cold dialysis center, watching other patients vomit, have a code called once, going home with giant bandages on… A whole four hours not being able to get up and move. Not able to have more than 32 ounce of fluid…having a fistula that gets bigger and uglier ….
I still think of my deceased donor several times a week. It used to be almost daily.
Similar for my hubby. With the transplant, he had a ureter leak, a-fib, brain surgery....9 surgeries requiring admittance the first year after transplant. With dialysis, he had less but a lot more fatigue and sluggishness and severe itching and restless legs. Now, 3.5 years post - he's doing really well - all that is gone. He's only gone once to the ER (dehydrated) this year, but released same day. We asked his nephrologist about the value of staying on dialysis for life versus a transplant. He simply said outcomes (quality and length of life) are far better with a transplant. I just asked my husband now whether he would change anything looking back. He laughed and said, "No...all those things were distractions, I wouldn't change a thing. I'd take a transplant any day over dialysis or death" I suspect some centers do transplant people that probably shouldn't have been - maybe more testing or researching and evaluating needed. But, on the other hand, people have choices too...right? Nobody will do anything without one signing off on things. And I do respect the right to not agree to something (or anything) too.
Hi,
I felt great great for a few months after my transplant, but I rarely feel really well . It’s nearly five years and I’m constantly fatigued, still have brain fog and like your husband I consider myself self still very sick . I know transplant is a treatment and not a cure but I was hoping I’d feel better .
Thanks for writing Winner76. My spouse and I have many hobbies we used to do together or apart and he has not done one since his transplant 6 yrs ago (on Thanksgiving day this year). His entire body tremors 24/7 from Tacrolimus, he just feels lousy everyday. He feels worse the past 6 yrs more than his chemo treatments 35 yrs ago that lasted 9 months for Hodgekins lymphoma. I wish you well.
It’s crazy isn’t it . I’ve been diagnosed with steroid induced diabetes and ulcerative colitis since transplant. Never had these problems before. I think the meds are destroying our bodies but we need to take them. My bones are also very weak and I get a lot of back pain, waiting for a dexa scan. The transplant didn’t even sort out my high blood calcium had to have a parathyroidectomy and still my calcium is high. I don’t know maybe we’re just the unlucky ones. I really want to honour my donor by living my life to the fullest but the fatigue stops me .
Thanks for stating your 'truth' how you are doing. My spouse managed his diabetes very well prior to transplant. The tacrolimus , for him has made his diabetes extremely difficult to manage now. He's on 2 insulins since the transplant and prior was on one at night before bed. I understand receiving this gift of an organ is a 'huge big deal', but we just wish transplant selection committee members had been more straight forward in telling us what some people experience being on these necessary medications for life to keep the organ not rejecting and the side effects that some people have which alters their quality of life in a small or big way. We feel the total truth was not told to us, the only focus was 'rejection' . I am glad to hear some people are living a fairly full life with their kidney transplant, but some of us did not receive that outcome . not even close.
I also had a parathyroidectomy which was a failed operation. The only drug to treat this that I know of is sensipar, and it made me vomit ten minutes after taking it. I tried it for a whole week. My body just can’t tolerate the drug. I went back to the surgeon who said I will not operate again, the risk is taking too much and you end up in the ED with convulsions because your calcium gets too low. Such is life.
Yes I’m suppose to take that drug and I just can’t it makes me feel so nauseous even the smallest dose. I do find that lots of water decreases the calcium level. You would think there would be other drug choices .
Yes it’s a real bummer there’s only one drug!
I can’t drink a lot of water. I have a problem called SIADH. Syndrome of Inappropriate Anti-Diuretic Hormone. Never heard of it? Neither did I. There is no doubt in my mind that my anti-rejection drug Cyclosporine caused it. Nothing else changed, except I changed transplant centers and they wanted my drug levels higher so forced me to take more Cyclosporine. No other new medicines. Medicines are what almost always causes SIADH except for major head trauma, maybe something else I”m forgetting which did not apply to me either.
If I drink “a lot” of water ( everyone’s needs are different) , my sodium level drops and I end up in the ED with Hyponatremia. I can’t drink 64 ounces. I have to cap it at about 58. The best way for me is to drink from a water bottle that is marked. I can’t believe I’m back on “fluid restriction” but thankfully it’s not 32 ounces, which is only what I could have on dialysis.
I had low sodium once , went to the hospital feeling sick , they told me I was dehydrated and to go home and drink lots of water, drank 3 litres throughout the day ended up in emergency with my brain swelling 🤦♀️ no I’ve never heard of that condition. Very similar to me, never had diabetes and now am back on a restricted diet after spending 8 years on the kidney diet . It’s never ending!
They told you were dehydrated without even running a CMP? Idiots.
Yes 20% of post transplant patients end up with diabetes. Still beats dialysis any day of the week.
I hate that they put me on predniose but I have also done a lot of research, yes, actual reading of scholarly papers and studies, and people who take predniose have fewer episodes of rejection and tend to keep their transplants longer.
Yes so my sodium levels were obviously dropping that’s why I was feeling so weird and without any tests they told me to drink lots of water. I think when I went into a&e my sodium levels were so low I was in serous trouble 🤦♀️ I done dialysis for 8 years , I definitely don’t want to go back there.
Wow I am so so sorry to hear this. I am not a doctor, so I wonder why they never switched him to cyclosporine or sirolimus? I had a bad response to tacrolimus and they switched me after three weeks.
HIs medications have been changed alot the first 2 yrs and doseages too to find the right combination so his kidney functions. The first 14 months it did not function well at all plus he had a low grade rejection that was resolved in 5 days in the hospital taking IV drugs. SO many doctors that handle only transplant have taken care of him and his kidney. I am learning that everyone's body and how it handles taking medications is very different. Thanks for your caring spirit ShyeLoverDoctor.
Everyone’s kidney journey is different. Does he attend a transplant support group? I find mine incredibly helpful. It’s probably my favorite hour of the week. It’s an online zoom there’s usually about 15 of us and we talk about our experiences. We all get it for example we know what BK virus is and no one else does. Unfortunately, the transplant zoom I go to is reserved for patient of the Mayo clinic and Banner Hospital in Phoenix. If you look on unos.org they have transplant groups listed by state I believe. There are other support groups that are for caregivers which you might find beneficial.
Thanks for you big caring spirit ShyeLoverDoctor. My spouse would never agree to doing a support group, not his style. After being married over 40 plus years, I think I know him by now. Glad you have found a support group which helps you. Stay well.
Yes you would know of course. I just wasn’t sure you were aware they do exist. I’ve been to a few groups for mental illness and never gone to one more than a couple of times. This is truly different because no one knows what it’s like being a transplant patient other than another transplant patient. Often obsessively watching labs. Constantly dealing worth multiple doctors. Ending up in the ED at the drop of a hat. Weekly blood draws. Taking medications that have awful side effects but which enable us to stay off dialysis. Having diseases (BK, CMV, EBV) that no one has heard of. It’s enormously comforting talking to others who have had the same experiences and lived through it.
I agree with all you said that other people including counselors for mental health do not understand. I just get tired of explaining what is going on to people who ask "how are things going"? I feel like we live in a Twilight Zone movie the past almost 6 years to be very honest. I don't blame people for not understanding, but having a kidney transplant and all that goes with it 'is' very complicated. I strongly feel that the light at the end of the tunnel for us will not happen. I appreciate your truthful comments and caring spirit.
I’ve had 3 people ask me if I still do dialysis and 2 people (one was my dentist!) how long I had to be on anti-rejection drugs.
Everyone is shocked when I tell them second transplants are common.
People think you get a transplant and just ride off into the sunset and go back to a normal life. That is rarely the case.
I asked my transplant nurse if patients ever regret getting a transplant and she said Yes sometimes patients have said that to her.
I’m sorry it has not worked out well for you. I can’t really see your situation improving after this long. Even when you feel awful, there’s still some beauty to be found in life. Flowers in the spring. Unconditional love of a pet. Being with people you care about. Music. A really good movie.
While I was on dialysis, two family members stopped speaking to me. They told me all I did was complain about dialysis, and that I wasn’t grateful enough for having good medical care. I didn’t notice either of them volunteering to donate, or offer to help in any way, such as wear a t-shirt “My sister needs a kidney”. I asked my sister if she would post a flyer at her work, she said “No, it would be inappropriate.” (Really??)
We all do the best we can.
I wish you all the best.
Thanks for all you wrote in several communications and I wish you all the best with your transplant and life journey with it.
Hi! My husband also had a lot of tremors from Tacrolimus - he couldn't write, including signing his name. So his center immediately put him on Envarsus - it's the timed release form of tacrolimus. It did wonders...he still has a tremor, but it's hardly noticeable. Maybe your husband can try that if he hasn't already.
HI Darlenia, thanks for caring. My spouse has experienced many changes in medications and doseages of them the first 2 yrs before they got his blood chemistry correct and the new kidney functioning well. Glad your spouse has had great success with changes in his meds. To me being on so many medications for the organ and other health issues not affiliated with the organ is like an orchestra so that symphany of music (your body's functioning well) is very difficult due to how meds affect you personally and other meds you take. Everyone's bodies are delicate in how things work. Just like taking chemo to kill the cancer, the side effects are bad for my spouse and for most people to achieve remission; then it is over b/c you are not taking the chemo for life.
I had a lot of tacrolimus side effects so I switched to extended release tac (envarsus) and I’m doing much better. I can feel when the levels are up, I do better when it’s under 8. I could switch to cyclosporine but I haven’t tried it yet.
I also was hoping to feel better .I really was. Still, it beats dialysis any day of the week.
No preemptive transplant experience. Cadaver transplant after three years on dialysis (HHD). If you can avoid dialysis DO IT!
Thank u!
Had preemptive transplant over 3 years ago when GFR was like yours. Live donor kidney. I was never on dialysis and didn’t feel that I needed it at that point.
A few days after surgery my brain fog was gone, my energy was back- I didn’t realize how poorly I felt til the new kidney took over. I am not on the drug regimen that most people are on and get Nulojix infusion once a month. Happy with my decision and doing great so far.
I understand your hesitation. I had that too. The best thing you can do is what you are doing now. Ask questions, do some research about the things you are most nervous about. Get answers from professionals, journals and doctors. Best of luck to you!
My goodness i can't thank u enough for responding. Please inform me, what is Nulojix? Were u not on those crazy steroids? (they scare me the most i think, tho thats probably cause I don't know enough about the other stuff ) and how did u manage to avoid the other drugs?
I got my transplant at Duke University which was doing a study involving stem cells from donor to recipient. It required using Nulojix at the time of transplant instead of the standard treatment and also sirolimus. I didn’t want to take steroids and was okay with monthly infusion so entered the study. The stem cell portion that I was so hopeful about did not work out with my donor. But of course I was continued on the infusion (also known as belatacept).
I did ALOT of research before I committed to this regimen. It has its drawbacks. For instance, I’m difficult to stick after 3 plus years of infusions. I still am able to get labs and infusion in the veins in my hands but I can see that at some point this will fail. (I don’t do arm sticks cuz I want to preserve those veins).
When I asked my team about a possible port they told me to hold off because I may be able to do injections of abatacept instead of belatacept. In future. Eventually. Maybe. That will be a whole new thing.
Also, it’s incredibly expensive. Must have good insurance.
Also, not available everywhere and not appropriate for everyone.
If I had to decide again whether to choose the traditional meds or belatacept infusion, I would still do infusion. That’s how much I don’t want the traditional medication regimen. But that’s me. Best of luck in finding out what your choices are and what’s best for you.
After reading what u said i looked into Nylojix and the cost alone floored me. The needle business was another thing. Yikes! Seems as if there are no great answers to the med problem.
Which is why research now will pay off. The more informed you become the less uncertainty you will feel as you move forward.
So far I'm afraid it's just making me crazier ;(
I understand how sometimes it is overwhelming to not have clear answers. No matter how much research you do there will always be some element of uncertainty. Just do your best. Take your time. Talk things out with your doctors and also friends and family who are supportive.
Thank u. Will try my best.
You have lots of answers. I am going to put it very plainly.
A LIVING DONOR KIDNEY WORKS BETTER AND LASTS LONGER THAN A DECEASED DONOR KIDNEY.
Period. Do NOT pass up this opportunity. You never know when a living donor 1. might change their mind OR 2. get sick themselves and be unable to donate. My friend’s potential living donor had a stroke and died very unexpectedly.
Even if you struggle with the meds - and most us of struggle, some terribly hard - you will have given yourself THE best chance for a longer, healthier life. Once you go on dialysis, your lifespan immediately shortens. So the shorter your new kidney lasts, the sooner you will have to go on dialsysis before another kidney becomes available.
Dialysis sucks. I did PT and was up to 13 hrs a night. I was adamant about staying away from HD. I started with gfr of 14% and went down to 0%. If I had your choice, I would go for the transplant....Even if I knew that after the transplant, I might not be doing so great. For me...not doing so great but have freedom from machines is better than being on dialysis, which is basically life support, you are tied to machines and schedules...I would chose freedom from the machines. You are either in center 2-3 days a week or doing PT at night. Your whole schedule revolves around that. It's hard to travel on dialysis. PT you need to bring the machine and supplies and have a clean area. Hard to spend the night at a friends. Vacations take a lot of additional planning. On HD, you are tied to your schedule. Diet including fluids (h20) are quite restricted. Either way, you are choosing a treatment not a cure. Most opt for transplant bc honestly, the chance to feel more like you did before is higher. With dialysis, you will never feel like your previously healthy self. Either way, good luck. You are on the right path. Gather as much information as you can so you can make an informed decision.
Ok. There are a lot of hard transplant stories on here. Mine went fine. I was on dialysis for 8 months. I got the transplant and everything went fine. I had no issues at all. It’s the best thing I’ve ever done. I’m have been blessed and I thank God for it.
Dialysis was terrible. I say go for it. Better to do it when you’re stable.
That's wonderful! I'm convinced the vast majority of people receiving kidney transplants have good outcomes and have no need to seek help or advice from forums like this one. So we don't hear from them. I've noticed some with a new transplant, return to their jobs within a month. (On FB, some actually say they're why they're unsubscribing....I'm too busy, gone back to work, etc.) I wish we saw that positive side here a bit more. I think some of us here are a bit older, so recovery can be harder and more complicated, etc. I know that's the case with us. But, truly, a very high percentage do very well with a transplant, especially those younger in age. I appreciate your response.
I was 58 when I got mine. I went back to work at 6 weeks. That’s what my doctor told me to do. I felt that I could have gone sooner. My husband who donated a kidney went back to work at 2 weeks.
Hope all goes well with yours.
welcome to the forum if you can get a preemptive get it glad you have a living donor that match . My doctor wanted me to get preemptive. But couldn’t find a living donor to match and not even a deceased donor to match . Still waiting I went on the waiting list at 18 per cent I felt wonderful but if an offer came up I would have took it . Didn’t start dialysis until 8 percent and I actually still felt fine. Been on waitlist three years My function did drop fast two years ago you never know we are all different . Get it why you are healthy you never know what this journey hold I am inactive right now cause of a low heart ejection fraction which they don’t know why . Good luck to you prayers lifted .
Yes, I was lucky enough to have a donor and my Drs. didn't want me to have to do dialysis. I wasn't feeling ill but was so exhausted and wanting to sleep all the time. It's been 12 years now and my GFR is around 20-24. And creatinine around 2.40.
Thank u for sharing that with me. Tho it is scary, I know that eventually I probably will have to do it and there are no guarantees how healthy I would be later. Ok, not probably, definitely. It's incredible that I don't want to accept the reality of this situation and say things like probably. I think it's helping to talk it out so thank u!
hi Leslie, just had a transplant from a live donor on 09/23. It was preemptive ie pre-dialysis for me but probably just in the nick of time as GFR was 6. I woke up feeling better than I had for many years! Getting used to the drugs is a thing, I am on tacrilimus, mycophenalate and pred, which is tapering down but I will always be on all these drugs. But it is an amazing gift, and I still feel way better. As a note, I went from about 23 gfr to 12 after having Covid, so I think you can’t take your gfr for granted, mine took a sudden hit even though I was living quite healthily and being careful. Post transplant gfr between 50 and 60. I know that it is a long road ahead, but my experience so far has really been amazingly good. I know I am a sample size of one, but just wanted to say (so far and fingers crossed) i wholeheartedly recommend it. Good luck to you, I hope it works out whatever you decide.
Thank u so much for sharing your experience. Hearing positive outcomes gives me such hope but seeing that other people have issues is something to consider too I guess. Love hearing that things went well for u and again, means more than I can tell u that u reached out.
I highly recommend the pre-emptive transplant. I was GFR 17 in the fall of 2022 when they gave me a peritoneal catheter to get ready for home dialysis . My donor ended up needing additional testing/surgery for a colon polyp before he could be approved to donate. Then there were some insurance hiccups that postponed his donation to March (we weren’t a match so used the paired donation system). Right before his surgery I got sepsis from my catheter which led to a DVT which led to a ruptured cranial aneurysm (common in PKD). It took me until December of 2023 to be cleared for transplant again. At that point my GFR had dropped to 8 and I had started hemodialysis. I was still working but I was very tired and not eating. I am happy to say that I got a transplant from a living donor and I am recovered and back to work.
TLDR: do it now if you can, you don’t know what kind of complications will arise as your kidney function declines.
U cannot know how timely ur response is and how much I appreciate it. So glad things worked out for u. Did u ultimately get ur kidney via the paired donation or was it a direct donation?
It was paired. Once he donated, I had a voucher to utilize once I was cleared. It took about 4 weeks to match. I’m almost a year out and every month I feel better and stronger. I have had “an ideal recovery” per the transplant team—absolutely no kidney complications. I had a couple of ER visits related to tachycardia and shortness of breath—probably related to me trying to be too active when I was really deconditioned from the prior year. I also have side effects from the tacrolimus: tremor, brain fog, low magnesium. So we switched to long-acting tacrolimus which has made things much better. I might try cyclosporine but I’m doing well enough that I’m not sure I want to make that change. Betacept is also an option. I work a lot (Medical Director of a small clinic and seeing patients as well as a part-time professor position in a medical university) and stay active with my young adult kids and life partner—hiking, traveling, and, now that is winter, skiing. I am somewhat cautious but haven’t had any infections at this point. After transplant you can try different treatments or go back to dialysis, you have a lot of options for medication regimens so it’s not like you’re locked into one treatment plan. Dialysis comes with lots of complications, too (although my mom has survived 21 years on hemodialysis she’s not in good shape at this point). But statistically, a pre-emptive donation from a living donor gives you the best life expectancy. Any choice comes with risks of complications and side effects.
Jeeze isn't that the truth. I'm just reviewing the transplant videos about how my life will change post transplant (urine measuring, fluid intake, BP, etc) and it all seems super overwhelming.
That’s only for the first few months. I only check my temperature, BP, and weight when I’m not feeling well now. I struggle a little bit with having to eat a meal with my pills because my schedule isn’t the same every day and so it took me awhile to find the right hour to take them. So now it’s 9-10ish AM and PM, allows me a little sleep in on weekends and I prefer a late dinner so that works. It felt overwhelming at first but it feels normal now. Feel free to ask more, I’m happy to keep sharing.
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would like to hear about kidney transplant experiences please
My donor is a match!
