Kidney
Complications with kidney transplant
November 11, 2021
in Kidney
interested in hearing about other kidney transplant patients who experienced complications/sleepy kidney after live donor transplant. My stent migrated and had to have two additional surgeries after transplant. Had clotting, bleeding, blood transfusions, nephrostomy tube and a round of hemodialysis after transplant. 23 days in hospital post transplant. Was healthy and active prior to transplant while on PD. Do not regret transplant but the experience was not as expected or as anticipated.
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I had a sleepy kidney following my transplant a year ago. I was discouraged for several days when I was sent to dialysis following transplant. Then by surprise came the day when I was told I did not need dialysis but would take lasix short term. What was explained to me is that when a kidney is put on ice for transport, it’s function just slows down. After transplant it just takes some time to wake up and function fully, each one is different. I have been blessed with a well working kidney.
I accepted a kidney from and IV drug user with Hep C. 12 weeks of meds and it is all gone. But I also picked up a CMV infection. The infection got out of control before it was realized what was going on. A little over 3 weeks of home of antiviral infusions and it is under control. It will never go away but it an be handled. Having a CMV infection that flares up is not ideal but manageable.
Finally, 28 days ago I was tested positive for Covid. So far I have spent 25 days hospitalized part of which, the last week, has been in a rahab hospital for Covid breathing recovery. I am much better but still have a way to go. When I went to the ER with breathing difficulty, I was transferred to the hospital where I had my transplant. It was a good experience since it only did I see a pulmonologist but several of my transplant nephrologists. Good communication among the doctors.
I had a sleepy live donor kidney. It took three weeks before my kidney finally started working. I had the opposite problem as most CKD patients, I peed too much instead of peeing less or not at all. My transplanted ureter and kidney couldn’t take the pressure of how much I was peeing and my native kidneys did not want to fully shut down. This caused a lot of ureter problems. I had constant uti’s that quickly turned to blood infections because post transplant, I no longer got regular uti symptoms. I had two ureter repairs, multiple neph tubes, I had 7 blood transfusions and about 6 stents. I had to have a catheter on and off for about a year to help relieve pressure too. So a year went by after my transplant before I was able have to have a double nephrectomy, which is what finally stopped my complications. I had my transplant in 2019, right before covid hit, so I was having all these complications during covid, which was hard and it delayed my double nephrectomy surgery.
I will be 2 years post transplant on March 5, initially the morning after transplant, I was back in surgery to repair a plumbing/bleeding issue, total time in surgery between the 2 days, 14 hours, next my new kidney was considered a slow starting or sleeping kidney resulting on a few trips back to my dialysis center. Then a number of balancing acts with medication to wake the kidney up.
With Covid on going once out of the hospital I was back in after a Fever spike over 104. Once released I was admitted one more time during first six months. With the transplant center close by I spent all my time in the Kidney wing away from Covid patients.
I have since had some problems due to not staying as hydrated but this is slowly improving. I have been very fortunate the kidney has had a hiccup or 2 but otherwise functioning normally.
There's been other medical issues either due to not changing masks often enough or issues as an example my wife coming down with Covid for over six weeks.
Separate rooms, being gloved and masked up in my own home since I was her caregiver, running errands and driving her back for testing. Along with other household chores.
I've found staying positive is important that how I face most days, I have my slip ups but keep getting further away from my transplant date and moving forward is all I can ask for.
I had a lot of troubles after my kidney transplant too. My donor's kidney was out of the body for over 24 hours. They said that my blood pressure was really low during the surgery. They weren't sure if I was rejected with the delayed graft function, so I ended up doing IVIG and plasmapherisis for a few weeks. It took 7 weeks for my creatinine to start to drop.
I think I was too oversuppressed after the surgery and it wasn't allowing my kidney to heal. I'm 5'1" and was just under 120 lbs at the time of the surgery. I think they weren't used to petite patients. Whenever the tacro got high in my blood, my creatinine went way up too.
After my creatinine started to drop, I started to get better. Then I had a CMV infection they didn't catch, so that landed me back in the hospital again. About 6 months after that I got really sick again, this time it was a parasite from taking my kids to a waterslide park. 🤷
I'm 3 1/2 years post transplant and things are finally stable now. Best wishes to you. It was really challenging to have such a different experience than I thought I would.
Transplant Patient
I love that you mentioned your size, Shelby. I'm 5 feet, and the last time I had to go in for a stent in my bile duct they took me to the pediatrics clinic. They didn't have the correct size instruments in adult care for someone my size
Thanks for petite patients responding. I am 5’3” 114 pounds and noticed reduction in creatinine after tacro reduction. Until mentioned I had not considered being over immuno suppressed. I had a lot of issues with the Foley catheter as well - probably because of it being too large. Very interesting. Good to see some facilities are accommodating. Just like less meds for children and elderly it makes sense smaller adults need their size considered. I know my doctors considered size of my new kidney prior to transplant and if my body could fit it properly.
No problem. I think that it's definitely not something most hospitals are used to. I had no idea the connection between my creatinine levels and tacro levels until someone mentioned it on a FB group I was in. They said something similar had happened to their teenage son (who was about my size) after the transplant because he had too much tacro in his system for his size. Overall, it helped me to see that it was a result of the tacro, not something else going wrong.
I had my transplant years ago. Everything was going fine. There was some hyper behavior from the loads of Prednisone. Then, I developed staphylococcus in my incision. Green almond scented drainage kept pouring out. Drains were created for the staph to drain into a bag. I was put on meperdine, phenergan and valium to keep me calm. I spent two months in the hospital. When I went home I had to use peroxide to keep the tube and other tunnels clean. It healed, but left huge holes where the staph ate out the tissue. Today I can stick my finger in all four sides. The scar is horrible. I was young back then and felt very self conscious. Today, I don't care what anyone thinks about it.
I’m a pancreas alone transplant patient. I’m sorry to hear about the complications a lot of you have had…it’s not easy and I commend all of you for not giving up. A positive outlook is best. I used to be a little bit self conscious about the scarring on my abdomen and what we go all through sometimes but even after having two rejections and some other problems the transplant was a blessing. Life is better and it will get better for you.
This is incredibly interesting!
So glad that petite size was mentioned above. My pre-op appointment is 5-26 and I will be asking about that. I am 4'11" and 95 labs.