Hello. I post sometimes but apparently have not “officially” introduced myself. I received a deceased donor kidney transplant on June 11, 2023. I was incredibly lucky. I begged my family and friends to donate to me, but they all refused except one friend who got tested and his function was not good enough. I am very grateful to people who decide to become organ donors because you just never know how your life is going to end up. I tried so hard to find a living donor, did not happen.
I’m happy to discuss my experiences.
Remember recovery is not a straight line and transplant is hard.
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ShyeLoverDoctor
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congratulations on your transplant. Wishing you continued good health! I was fortunate to receive a kidney from my husband almost 6 years ago. Things are going great.
Congratulations on your transplant I'm the same as you 14 months in and it's a rocky road to getting as good as you can it's not the magic cure they tell you it is when your on dialysis told me I'd be a new man it is a God send don't get me wrong but I got diabetes from the steroids and that's a nightmare traded one illness for another and the side effects from the meds are a nightmare also but at least no dialysis 3 days a week as for family not offering you one mine didn't even mention it and I'd die before I'd ask them goes to show you where you are in the world when the chit his the fan don't it you can't dependonanyone but yourself hope you keep going well best of luck
What dose of steroids were you on BMW? I didn't realise you could get diabetes from steroids!! Thanks for being honest about the reality of post transplant. My unit talks about transplants as being like the holy grail and you will feel amazing. I prefer to hear the actual experiences of patients and not the rose tinted version.Wishing you all the best
The most common steroid that transplant recipients are given is prednisone. Often, it's started at a higher level and then tapered down to a "maintenance" level. That is what causes your blood sugar to rise and develop diabetes. I'm on 5mg daily, which is generally the lowest many doctors will go, but everyone is an individual, so YMMV.
I was pre-emptively transplanted in October 2019. I was a Type 2 diabetic, having been diagnosed 4.5 years previously, so I was on oral meds and managing it quite well. I was told that my diabetes would be worse following transplant, but I was NEVER told that insulin was even on the table as a possibility, let alone a virtual certainty! Three days after my transplant, the nurse came in to teach me how to give myself insulin shots. I have a horrendous fear of needles, so I told her, through tears, that was NOT going to happen. Unfortunately, I lost that battle. She said I would need to take insulin four times a day for the rest of my life; that I would never get off of it. I said, Watch me!
Fast forward a couple of years and 60 pounds lighter, and I'm no longer on any insulin. It was a lot of hard work, but I was tired of needles. (I learned to close my eyes when I stuck it my belly -- not a really good strategy, but it more or less worked if you don't count all the bruises as a failure!) The "down" side of being off insulin is that I HAVE to be much more strict about what I eat (when on it, if my blood glucose was high, the fix was just a higher dose of insulin), and I HAVE to get some exercise everyday. The later is a current challenge because of several injuries I'm struggling with, but I don't want to go back on insulin, so I make it work.
The insulin battle was not the only issue I've had post-transplant. I've been back in the hospital five times, to the ER (but not admitted) at least a dozen more times, and had over 100 blood draws in the first three years. During that time, my creatinine was only about 0.25 pts lower than it was pre-transplant! I've more infections than I care to count, my kidney function is still not in the normal range, and my chart still says I have ESRD.
My journey has definitely not been what I was anticipating, but I can say that without a doubt, I am grateful to be alive. I am a woman of faith and believe God knew exactly what He was doing when I got the call that Saturday. Through the struggles and challenges, I have learned to trust Him in ways I never would have if I hadn't had this experience. I've come to appreciate the beauty in the ordinary, to celebrate the things I took for granted before, and to just not sweat the small stuff. Post-transplant life is not perfect, but then, neither was pre-transplant life. I wish you well.
Much respect to you for being so proactive, regarding your insulin battle. It must have been awful to have your transplant, then realise you would have to start injecting. You should be extremely proud of what you have achieved. Yes that was the same steroid I was prescribed, when I was diagnosed, except i was on 50mg. It was the worst part of this journey, so far. My hair was falling out, put on 3 stone and had chronic insomnia. My moonface was on another level.
It's the risk of infection that worries me. One of my fellow patients got a transplant, soon after I started dialysis. Transplants had been revered as "life changing"...unfortunately he caught an infection and died. It really opened my eyes to the reality and risks of the procedure.
I too look and appreciate the small things in life more. From nature, to appreciating a day, where I feel like a normal person 🙂...an uneventful day is a good day to me!!
Wishing you all the best on your journey and thank you for taking the time to respond. It has been very helpful.
The Mayo Clinic in Arizona which people come for treatment internationally and has a stellar reputation, was willing to drop my prednisone to 2.5 mg. However that really worried me, I want to keep this kidney. When they discharged me after 1 year, I went back to the transplant center where I was listed before (UCLA) and they said it has to be the standard 5 mg.
Prednisone and I never had a problem with diabetes until 2 days after the operationblood sugars started going mad it's not all sunshine and roses a transplant but it definitely is the lesser of 2 evils
Oh yes, steroids cause diabetes. THey raise your blood sugar. They make you hungry, prompting you to eat more, plus they change metabolic pathways in your body.
I had no idea it would be this hard. They truly do not even bother to prepare you in the least. They know that however bad it’s going to be, will likely be better than living on dialysis, so, why tell you??
Having a transplant is like getting an entirely new disease. The medication dance never stops.
I got up at my synagogue and gave an entire speech to 45 people asking for a kidney donation. If you don’t ask, you don’t get. Two people volunteered. One was a 74 year old who had had multiple kidney stones and the other was an 11 year old girl.
In hindsight, I regret asking family and friends directly. they know you need a kidney so if they wanted to give it to you, they’ll offer. But I was desperate. And it didn’t do any good except end up with me having hurt feelings and being resentful.
That's great news 👍...I'm still on dialysis but keep in touch with a lot of patients who have had transplants. It's a real mixed bag of experiences. Some great and some not so good. I haven't asked anyone I know to be a donor. My husband got tested but was not a match and my sister offered but I told her not to. It worried me, that their health might decline in the future. I know they get priority on the transplant list but I would not want any loved one to go on this journey. However it would have been nice if some of your family and friends made some sort of gesture!! Can I just ask what the worst part of your transplant has been? Also what dose of steroids are you on? I had an awful experience on steroids and I dread the thought of going back on them.
That is why the donor is tested extensively. Guess what - donors lose 25 to 35 % of their kidney function, forever. That’s why they won’t take anyone with a GFR below 85.
No, nothing about your opinion, sorry . My friend Dewayne who is still on dialysis, his daughter wanted to give him her kidney, but he refused, he never wanted to cause her any future health issues. The donor team and the recipient medical team are kept totally separate. They are never ever going to sacrifice the health of the donor just to give the other person a kidney. That was my point. They test the donors very thoroughly. I also gave the line “You can live just fine with one kidney! Share your spare!” THEN I found out the donor LOSES function. I had no idea.
IF this is TMI, sorry, you asked. Worst part of my transplant! Easy.
I had the operation on a Sunday. On Thursday I was discharged. They’re supposed to make sure you have a bowel movement, they gave me an enema, they thought I did, but I didn’t really. ( explain this later) I took opioids Sunday to Thursday but deliberately did not take any with me when I left the hospital.
Four days after I was discharged from the hospital, I was having a lot of painful gas etc and told the doctor who said let’s get you in for an X-ray. All my friends had been saying, oh you’re constipated, it always happens. I waited 90 minutes for the X-ray, then headed to the cafeteria.
The doctor called and stop do not eat to directly to the ER. X-rays showed lots of feces in the colon..They gave me 2 enemas. Lovely. Didn’t work. Turns out it was far, far move serious than constipation. I had developed what’s called Ogilvy’s Syndrome. It’s pseudo obstruction of the colon. The colon stops working and just quivers. It acts like there is an obstruction but there is not. I was not stopped up. Barely anything wsas getting through and out.
Ogilvy’s is rare, it occurs in 1 in 1,000 hospital admissions each year. It is fatal in about 15% of patients. It’s very painful. Your colon gets dilated with feces, it can rupture, filling your abdominal cavity with fecal matter and you die of sepsis etc. They put an NG tube up my nose and down into my stomach to pump fluid out and decompress my system, The pump ran 24/7, they’d stop it when I had to swallow meds. ((No food or water for 4 days). I woke up at 4 am and a doctor I didn’t know was standing there and I asked who she was. She said “I’m here from colorectal surgery and I hope we don’t have to remove your entire colon.”
The treatment choices were they could try a colonoscopy and try to clear the obstruction, or take a very powerful drug (can’t recall name) by IV that causes violent contractions of the digestive system, and can also lower your heart rate , so they have to have a shot of atropine standing by. I was freaked out by taking a drug like that and said I wanted to try the colonoscopy I’m not afraid of that I’ve had 3. They put me under.
I woke up from that and the surgeon said it didn’t work. I got angry and yelled at the surgeon - something most people would never dream of doing, but I was scared. I had to agree to take the drug, IV. I was scared so I asked my friend who was my caregiver to stay.
So they gave me the drug (this is day 3) and put me on a bedpan (blanket over my waist) with four people watching - my friend, the nurse with the atropine, and two GI doctors - while I expelled two and a half bedpan’s worth of food that I’d eaten in he past 8 days. When it was clear the atropine was not going to be needed, the drug wasn’t killing me, my friend ran out of the room. It was just horrific. And nurses should be paid way, way more than they make.
They took an X-ray few hours later, said that wasn’t enough your colon is still dilated you need the drug again. Same thing all over (didn’t ask my friend to stay!)
The next day I apologized to the surgeon.
They let me go on Thursday, so I was there four days. For three of them, I had to live with the fact that I might have to have my colon removed because this couldn’t be resolved. I had X-rays of the abdomen every morning.
After that happened, just for fun, I started telling nurses over the next month at transplant center (hey I was bored) I had Ogilvy’s and had they heard of it. Only one nurse ever had.
I was in the ER about 6 months later and told the intern that and his eyes got all big and he said “Wow I’ve never seen a case of that since I learned about it in med school!”
Having Ogilvy’s was the worst thing I had to deal with post transplant. Totally derailed my recovery. I had heard re-hospitalization was common the few months after transplant but figured it couldn’t happen to me, I was so young and health.y.
Nope, still have my colon. I went through four days of hell and I sustained a lot of radiation because they had to X-ray me over and over again to see if I was improving. If they hadn’t “managed it” I’d be dead now. So, yeah, they cured me, and I’m fine now.
I also had a bad experience on Prednisone years ago. I have been on antidepressants for over 30 years. I do the cycular and feel great. It is just a pain to have a catheter. I am on the transplant list and very scared after reading some of your experiences. I just turned 60 and hope to live a long life but really wonder if a transplant is worth going through.
Some people do choose not to have a transplant. It’s a highly personal choice. The first year can be rough.
Transplant meds, if you didn’t know, increase your risk of lymphoma and melanoma, the deadliest form of skin cancer.
But, the freedom from dialysis is amazing. I did in-center and whenever I had to make an appointment etc I would ask which day of the week was that, because if it was a Mon Wed or Fri, I’d say no, I had dialysis that day. You will, in general, live longer and feel healthier than on dialysis. And say goodbye to fluild and diet restrictions.
You might not have been told this, but people who do peritoneal dialysis, will eventually end up doing hemodialysis. That’s because the peritoneal membrane wears out. When you have to go on hemodialysis, your quality of life will take a dive, almost certainly. Yes, some people do it at home. I did in-center then tried home hemo. But I didn’t feel safe without a nurse etc around so I went back to in-center. Certainly even home hemo is going to cut into your schedule of the daily activities you want to do.
I cannot tell you how long your peritoneal membrane will last. Ask the nurse about this next time you see one. There are probably various factors that go into it, like maybe how many infections you’ve had, etc.
That's true - no one knows how long the peritoneal member will last. One lady at my husband's dialysis center was on for 16 years. Poor catheter positioning with it rubbing against the membrane as well as hydraulic pressure, overfilling, etc. are some of the factors involved in PD failures. "Drain pain" a signal to take action quickly to correct that situation. ncbi.nlm.nih.gov/pmc/articl.....
Congratulations. Don't look back Lingering bitterness over the lack of familial or other volunteers is only counterproductive. People refuse to donate mostly out of fear and ignorance, risk aversion, religious reasons, etc. I doubt anyone does it maliciously. Put that in your rearview mirror. A transplant turns a new page of life for you, so exploit it. I had my transplant 25 years ago, and still going fairly strong (Creatinine still around 2.5-2.6). Be absolutely compliant with your meds; that's a true key to graft longevity. Get your meds down to a routine, stick to it. And go enjoy the new opened doors, not tethered to a dialysis machine, free of the worries of ESRD, etc. You have new opportunities, new capabilities, more time. Use it all. Make the gift you got worth having received, don't waste what it gives you!!!
Absolutely. Bearing a grudge is pointless. My cousin said, “It would take too much time.” My sister said “Just stay on dialysis in 8 years it will be your turn.” (That was the wait time at the center near me where I was first listed)
Congratulations on your transplant! It is a "Rocky Road" but LIFE is worth it! This October I will be 25 years post transplant from a deceased donor. I have been able to see both my daughter's marry, birth of my 2 grandsons, had a full career in Gerontology, I travel with my husband and am now retired and moved to Casper, WY where I have a view of the Rockies.
It hasn't always been easy, but I seem to be on "cruise control" now. Have labs done quarterly, see my nephrologist every 6 months and he is always available if problems pop up.
I have been active with the NKF as an Ambassador on HealthUnlocked & an Advocate in the state of WY. Also volunteer and am a public speaker with Donor Alliance WY/CO
Best advice I can give you - you know your body better than anyone. If you are having a problem tell your nephrologist/transplant team. Never take anything OTC, supplements, etc without checking with your nephrologist. We are all different as our immunosuppressant meds are...sometimes it can cause an interaction that is not good for your transplant.
You are an inspiration! I've had my transplant for 14 years from a deceased donor. I thank God for my transplant journey and try to do everything that I can to keep healthy. Reading about the longevity of your kidney makes me feel so positive.Continued good health and best wishes to you.
25 years! Awesome. Yes it sucked, I missed my beloved aunt’s funeral because it was just too hard to travel on dialysis.
I am very used to asking my doctors if a med is safe. I took other meds pre-transplant for a life-long condition and one of those can have very very serious interactions.
I had my transplant 9/19 from a deceased donor. I tried everything to get a living donor. Since I was in my 60’s potential donors my age wouldn’t qualify for one reason or another. I also didn’t really feel like I was worthy of receiving a kidney and therefore it was hard to ask anyone to help. I had a nice billboard company put up a spot on one of their electronic billboards for me. I feel great and will be forever grateful to my donor and his family for the gift he gave me. It could have been possible that your family wouldn’t have qualified for the transplant too. Don’t be too hard on them. They don’t really get how you feel when you’re staring at the need for a transplant. ❤️
They don’t really get how horrible dialysis is. Dialysis only replaces 10% of what a healthy person’s kidneys do! They don’t know how awful chronic anemia is. Believe me, they have no idea how horrific fluid restriction is either or that it even exists. I was not “staring at the need for a transplant.” I was living in dialsysis hell, as my sister in law put it. One friend asked me if dialysis was an hour long.
My friend offered to donate but he was 59,so after many tests, not enough kidney function. A stranger offered, but she was 60, not enough function after going through the tests .
I think way too many happy TV movies and news articles make you think getting a donor will be easy and tons of people will volunteer, come out of the woodwork to help. Nope.
You said it life after a transplant is not a straight line nor before! I was very very lucky I never did dialysis and I found a living donor too! I was told in 2017 I was in stage 5 kidney failure but by the grace of God I manage to not go on dialysis but I also told my doctor I wouldn't do dialysis for my own personal reasons. Between 2017 and 2019 I manage to loose almost 50 pounds which was not necessary just kinda happened. I went I that diet called my husband left me because I was dieing and I caught him with another women. I was put on a dating sight by my oldest daughter and I always told the guys I was in stage 5 kidney failure and if I don't respond in a week or 2 it's because I am either in the hospital or dead. A guy offered me his kidney December 2018. January 2019 he got tested and I was told he was a perfect match and May 16, 2019 I got his kidney! We are just friends now and he will always be a part of my life and of me! Everyone's journey is so different and difficult bit at least here we can share and help one another. Hugs
I had a similar experience with my husband. He had a 2.5 year affair and ended up leaving me but wants to come "home" saying he still loves me. I don't know what to do anymore. Peritoneal dialysis is great and more painless compared to hemodialysis. I hate the phosphorus blockers I have to take with meals so I sometimes just drink the liquid protein for a meal and actually eat once a day. I did hemodialysis for over 2 years and that was a nightmare and very painful. I can't take any baths anymore because of my peritoneal catheter and have been doing PD for almost 2 years. I did get peritonitis last summer because I had an algae growth in my pool after it rained so this year have gotten a cover for the pool and if not in it, it stays covered and so far so good. I use a colostomy bag for my catheter plus other coverage under my bathing suit. Very confused about husband a transplant afterlife.
I’ve seen you comment on many posts around here. You’re very very passionate and you care a lot about helping other people. Here’s wishing you continued success on your kidney journey.
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