Kidney Transplant: Questions as I prepare for transplant

Posted by jennifer0726 @jennifer0726, Nov 14, 2020

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?
Thank you!!
Jennifer

Hi @jennifer0726 and welcome to the Transplants group on Mayo Clinic Connect. You're asking great questions about what to expect in the hospital post transplant and Mayo Clinic in Rochester. I'd like to bring in fellow members @jolinda @rosemarya @keggebraaten @gingerw @ca426 @elevinton @scottb32 @dshaver and others to share their experiences with you.

While we wait for other members to chime in, you might also be interested in reading this related discussion:
– COVID-19 and Transplant Patients https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/

Getting back to work, driving and regular routine will be different for everyone, as you say. Your general health and age will also play a factor. Will you and your caregiver be staying at the Gift of Life House during your stay in Rochester?

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@jennifer0726 I would like to add my welcome, also, to Mayo Connect! We have an amazing group of members with a wide spectrum of experiences. How exciting for to have this upcoming experience, and a gift of a new chance. Kudos to you and your donor ;))

In this time of Covid-19, standard protocols have changed, to be sure! The details you are asking, you may want to ask your patient advocate, as they will have answers. Seeing your surgery will be a bit more complicated than a "normal" transplant, since they are also doing a nephrectomy, there may be different post-surgery and recovery treatments.

My husband had a transplant 10/01/2016, at Scripps Green Hospital in California. He was in a private room, surgery was Saturday night, and released on Tuesday. The first three weeks his appointments were 3x a week, bloodwork pulled each time. He then went to 2x a week for follow-up, again bloodwork pulled each time. He received phone contact from the transplant nurse between appointments. He was cleared to drive after 6 weeks, and remained off work for 3 months, although he was ready after 2 months to return. He also rides a motorcycle, and was cleared at the 6 week mark. He had no post transplant issues to speak of, and your experience may be same as, similar to, or completely different.

I wish you success, lots of happiness, and an uneventful recovery.
Ginger

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Thank you, Colleen and Ginger! I will ask my nurse coordinator when I am able to talk to her!

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@jennifer0726, I can only try to imagine some of the questions that are filling your mind as you get nearer to your transplant. I want to invite @tasher3433, @cmael, and @jolinda to this discussion. I think that they will have some experience to share with you.

Here is a Discussion that is a Must See for you and anyone who will be having living donor simultaneous kidney transplant and bi-lateral nephrectomy, You can participate in the discussion as well as meet Dr. Preito and his first PKD patient to receive a simultaneous kidney transplant and bi-lateral nephrectomy.
PKD kidneys removed at time of transplant!
https://connect.mayoclinic.org/discussion/pkd-kidneys-removed-at-time-of-transplant/

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@jennifer0726

Congratulations on your upcoming PKD kidney removal and transplant!

I was in the hospital for 4 days and was home from Rochester the weekend after I was discharged (I live close though so I wasn't too worried). I remember daily blood-work for at least 2 weeks until my medication levels stabilized, I don't think I had blood drawn on the weekend though. I honestly can't remember how long until I drove but maybe a month or so? I was off work for about 6 weeks and eased back in. I got tired quickly if I did too much at once. Physical Therapy was a must for me afterwards to get all of my muscles working and strong enough to hold me up. 🙂

Hope this helps,
Jolinda

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Congratulations

How long did it take for you to find a donor?

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@jennifer0726 I had a live donor transplant with my daughter as the donor. Dr Prieto was my surgeon It was not done with a nephrectomy. Our surgery was done on Friday and I left the hospital on Tuesday. I had a private room. I could have left a day earlier but I’d had a night of bad diarrhea and was exhausted. The diarrhea happened after drinking magnesium citrate. That was prescribed for severe cramping and I’d also been given morphine for that. The diarrhea lasted for a week or so and slowly cleared up. We stayed in Rochester for 3+ weeks, which included the time for a pre op exam, at a rental home. I had issues with rejection within a few days and had 4 or 5 days of Medrol infusions. I remember going into Mayo every day, except for weekends, for labs and other appointments, which included classes about nutrition, cleanliness, labs after returning home, etc. My abdominal pain from the surgery lasted about 7 weeks, but I felt it mostly when I was up walking. Of course that too, diminished with time. Driving wasn’t an issue for me since we’re retired and my husband did the driving. Except for arthritis in my hands, I was in good shape prior to surgery and didn’t require physical therapy. I didn’t realize how low my energy level had been until I started recovering and feeling so much better. Wishing you the best with your surgery and recovery!

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@sherelle930

Congratulations

How long did it take for you to find a donor?

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@sherelle930 Welcome to Mayo Connect. It appears you have been reading many posts! I see you joined as a member in August, but I honestly don't recall greeting you.

Are you considering seeking a live donor for a kidney transplant? We'd like to help you explore options, and if you are comfortable sharing your story, that would help! As you are seeing, each person has their own unique experience as they journey along a kidney disease issue.
Ginger

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@jolinda

@jennifer0726

Congratulations on your upcoming PKD kidney removal and transplant!

I was in the hospital for 4 days and was home from Rochester the weekend after I was discharged (I live close though so I wasn't too worried). I remember daily blood-work for at least 2 weeks until my medication levels stabilized, I don't think I had blood drawn on the weekend though. I honestly can't remember how long until I drove but maybe a month or so? I was off work for about 6 weeks and eased back in. I got tired quickly if I did too much at once. Physical Therapy was a must for me afterwards to get all of my muscles working and strong enough to hold me up. 🙂

Hope this helps,
Jolinda

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Thank you Jolinda! You are a great inspiration to me! I appreciate all the input that you have given me. 😊

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@sherelle930

Congratulations

How long did it take for you to find a donor?

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I actually thought I would never get a living donor, because so many of my family either have PKD or have other reasons why they can’t donate. I was listed three years ago in Iowa, then moved inactive, as my function bumped just above 20%. In January when I drop to 16% I got a phone call from my cousin who did not know about my needing a transplant. After I explained my condition, she wrote me a letter offering to give me a kidney and she is also type O! By that time Covid was just emerging and she was unable to get tested until summer. Long story short, we ended up getting approved in Iowa, but the Surgeon there wanted to do it in two separate surgeries with dialysis done in between. I knew that Dr. Prieto at Mayo was doing the bi-lateral nephrectomies simultaneously and laparoscopically. Thankfully we both hav been approved at Mayo now and my surgery is about two weeks away. You never know how mentioning your condition may lead to the right donor! Tell your story especially to those who care about you and ask them to share it with others! Best wishes on finding your living donor!

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@cmael

@jennifer0726 I had a live donor transplant with my daughter as the donor. Dr Prieto was my surgeon It was not done with a nephrectomy. Our surgery was done on Friday and I left the hospital on Tuesday. I had a private room. I could have left a day earlier but I’d had a night of bad diarrhea and was exhausted. The diarrhea happened after drinking magnesium citrate. That was prescribed for severe cramping and I’d also been given morphine for that. The diarrhea lasted for a week or so and slowly cleared up. We stayed in Rochester for 3+ weeks, which included the time for a pre op exam, at a rental home. I had issues with rejection within a few days and had 4 or 5 days of Medrol infusions. I remember going into Mayo every day, except for weekends, for labs and other appointments, which included classes about nutrition, cleanliness, labs after returning home, etc. My abdominal pain from the surgery lasted about 7 weeks, but I felt it mostly when I was up walking. Of course that too, diminished with time. Driving wasn’t an issue for me since we’re retired and my husband did the driving. Except for arthritis in my hands, I was in good shape prior to surgery and didn’t require physical therapy. I didn’t realize how low my energy level had been until I started recovering and feeling so much better. Wishing you the best with your surgery and recovery!

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Thank you for sharing your story with me! I appreciate hearing how it went for other people. I know it’s individual, but it gives me some idea of how things may go. 😊

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@jennifer0726, I hope that your planned surgery date will not be affected by the current pandemic surge. Have you received any updates concerning that possibility?
I have a discussion from the transplant group that I want you to see. Please ignore the part of the title, "Waiting for the Call" because everyone has things that need to get done at home before the surgery. And there are tips share by members who will have living donors, too.

Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
Jennifer, What would you like to add or ask about?

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