Kidney Transplant: Questions as I prepare for transplant
I have PKD, and will be having living donor simultaneous kidney transplant and bi-lateral nephrectomy 12/7/20, and have some questions.
After the surgery, are transplant patients assigned private rooms? My concern is with COVID-19 restrictions, would patients have to wear a mask all the time in their rooms if they are semi-private? I also have asthma and cannot imagine having to wear one 24 hrs a day.
After release from the hospital, do you have daily blood work?
How often do you actually have appointments at Mayo while staying in Rochester?
How long before you were allowed to drive?
How much time off work (working remotely-desk)?
I know everyone is different, but what was your experience?
Interested in more discussions like this? Go to the Transplants Support Group.
Since you had a bi-lateral nephrectomy, may I ask what was the criteria for that removal, were the native kidneys causing infection.
Reason I ask is: I am nearing 3 years of Kidney transplant ( new kidney is performing nicely) & both of natives are still in my system and I suspect they are still online within the blood flow system (probably less that 2%) but are generating EPO & contributing to PTE secondary.
Any comments would be appreciated…Thanks
@l0lag0lag0b3, I would like to reach out and offer a virtual handshake to welcome you to Connect. I'm happy to hear that your transplanted kidney is doing well.
I have a transplanted liver and a kidney. My transplant was 13 years ago, and they are doing well. My kidneys failed suddenly while I was waiting for my liver transplant. The diagnosis was hepatorenal failure. I still have my native kidneys, and they don't produce urine. As long as they don't cause any problems, it is my understanding that they will remain in place.
I realize that you came to Connect with a question, however I have a question for you because now I'm curious. How did you learn about/become suspicious of your native kidneys that would warrant their removal? Were there any specific tests performed, or any symptoms related to the EPO (Erythropoietin Hormone) or the post transplant Erythropoietin? Has your kidney transplant team expressed any concern?
Many thanks for your response, Congratulations on the 13th anniversary of transplant and wish you keep on doing well for long time to come 🙂
Let me say a few thing about myself, My wife was the kidney donor which to me was a miracle and over the last three year (to be completed next month) my kidney function has been around 80. except for the PTE secondary issue.
Having an engineering background & a couple of misleading medical experiences prior to the transplant – I have developed an inquisitive mind, and I read with great passion all the articles / case studies related to the PTE secondary issue (NIH/JAMA). Also had my transplant done out of state as my wife wanted me to go a leading kidney transplant center ( srtr.org ) as our current state is not listed in the first 25 performers domestically.
One of my native kidneys is in the pelvic & had low function 5% or less for the 30 years (prior to the transplant). It was not removed during the transplant. Had Ultra sound done to measure the kidney shrinkage.. they have shrunk hopefully in coming time they will shrink more.
My measured EPO is around 40, So currently I am taking highest dose of ARB and let's see if that helps, started with 25mg then 50mg and now 100mg to weaken the EPO paths heading to the bone marrow. if this does not work , phlebotomy is next step ( i have had it done once) . After 4/5 phlebotomies I would quality for native kidney removal (per medicare guide lines (am a senior) . My understanding is even though native kidney are no longer participating in the urine manufacturing process.. how ever they are signaling (generating EPO) saying help me I need more blood) so until the native kidney shrink significantly this phenomena will continue. In Some case studies with 50mg of ARB has been successful to control the high RBC / Hematocrit situation.
Also I am a vegetarian so my heme iron intake is quite low. Do walk at least 4 miles daily to keep my cardiac function active & alive.
Of course if I develop infection due to the native kidneys then the removal will get priority.
That's my story… I still grateful for my kidney transplant and will remain active on the this issue and am thankful to you for sharing your experience. Regards, Neil
Hi Jennifer! I was just at the Mayo Clinic Rochester hospital for an unrelated surgery, 10 years post kidney transplant. The hospital is spotless, I never saw one person without a mask, and, I did not have to wear one in my private room. You will have a private room. I was on a general surgery floor this time and it was as clean and safe as the Transplant floor. You will have appointments everyday once you’re released from the hospital. I had a severe, and highly unusual, complication shortly after my transplant (Dr. Prieto had only had one other one in all his years!) so I cant speak too much to the what happens afterward. It’s all a blur. You will be in good hands and everyone will be there to keep you safe. The one suggestion I always mention is bring some larger than normal panties and loose comfortable pants. Maybe it was just me, but I wore “granny panties” for quite a while afterwards! Good luck and God Bless and keep you!
@mollyv, Hi Molly. I absolutely appreciate your "insider" report from your recent experience at Mayo Clinic Methodist Hospital! I know that our members who are patients at Mayo will agree with your assessment of the pro-patient environment. Mayo prides itself on its patient centered care, including the cleanliness. When I had my transplant, I marveled at the effort by the entire staff who worked so consistently to keep the area clean and sanitized. Hats off to all of the entire cleaning, laundry, transport staff and all of the behind-the-scene heroes 👍
Molly, Congratulations on 10 years with your transplant! I am going to tag Jennifer – @jennifer0726. I know that she will be delighted to know that you are thinking of her. (If you use the @name, the member will get a notification that they were mentioned)
How was your recovery? What advice do you have for ppl going to have the surgery(bilateral neph w/transplant)