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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@jennifer0726

I'm counting down the days until your big surgery! I'm thrilled for you to start your new life with no PKD! ♥️

Try to eat softer, easy to digest foods in the coming days so you can bounce back more easily. Rolled up towels helped me make the hospital bed more comfy, especially behind my neck. Expect meds to change frequently for awhile but you'll quickly learn the ropes.

You are in the best of hands with Dr. Prieto and the Mayo Clinic staff. I just know you'll do great!

Hugs,
Jolinda

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Hello Jennifer!
A week until surgery, is exciting and a bit terrifying, all at the same time! I too have PKD, and I had a transplant and single nephrectomy 10 months ago at IU Hospital. So I will share my story, but not sure that you will experience the same things I did. I am thrilled you are getting both of those suckers out at once with Dr Prieto! It is definitely the way to go! And I send a prayer of thanksgiving, grace and honor to your donor!

I went public with my request for a kidney in 2017 and was amazed as people came forward! Like an extreme episode of "This is Your Life," people from every phase of my life came forward to offer me the gift of life. It is spectacular how wonderful humans can be, especially when we hear, so often, the opposite.
I, too, found a donor, was taken off the list when my function bumped up above 20, and then my donor and I had to be retested to get everything going again. It was a total of six months to be matched, and then three years before the actual transplant took place.

I had a single room after surgery. I am sure with COVID, the hospital staff are taking serious steps of masks, hand cleaning, etc. But ultimately you are your own best advocate. If someone (medical, cleaning services, meal services) enters your room coughing, forgets to wash hands or put on new gloves, or looks ill, etc – stop them and remind them to change gloves, masks, or ask them to leave and send someone in their place. It is a bit awkward to self-advocate, but I treat my new kidney like a constant pregnancy – I am housing a gift that I protect to the best of my ability. Which means, sometimes I have to enter the land of awkward, but I do it to protect my best chance of meeting my grandchildren one day.

Pain management was a bit of an issue with me, because once they moved me from IV meds to oral pain meds, I had to ask for the meds before they were administered. But no one explained this to me, when this switch occurred, or if they did I was looped out and didn't understand. So if I slept through pain med time, I did not get meds, which put me behind the pain, which is not where you want to be. Every four or six hours, whatever is prescribed. Set the timer on your phone. Stay ahead of the pain and you will be good. I think I was treated, at times, as a kidney transplant patient, rather than a kidney transplant and nephrectomy patient. The two are very different beasts! I do not believe this will be your experience with Dr Prieto, as your surgeon, but just wanted to put it out there, as something I wish I had known ahead of time. Also, eat something (broth, toast, soup) because the meds are worse on your system without food.

The weirdest part for me was the feeling of things sloshing around inside when I moved. When the large PKD kidneys are removed, there is extra space in the body and the body does not love that:) But it gets better every day. I found it best to wear the abdomen wrap whenever I sat or walked and took it off when I was resting. I was not able to lay on my side for probably 6 weeks. Just long enough to think, "Well, maybe this is it. Maybe I will never be able to sleep on my side again." But it, like everything else, just keeps getting better. Just slower than I thought it would.

I had my surgery in February, a month before all the lock-downs for COVID. So at first, I went to the hospital 3 times a week for blood-work and to be seen by my surgeon. I would go to the hospital, get blood-work, before I took anti-rejection drugs. Then I went to a room with beds and other patients, with curtains between to wait for results and the surgeon. I did this for 2 weeks and then I went home (3 hours away) and my husband drove me in twice a week for 2 weeks.
Then COVID hit and everything got locked down. So I did blood-work locally two times a week (have to call in ahead of time for appointments now with COVID) and did Zoom meetings with my doctor and follow-up team from home to go over the results. My team is amazing and stayed on top of everything! I did this for 4 months and then started going in to see my doctor once a month for 2 months and now I have blood drawn once a month and meet with my doctor once every three months, unless I have an issue.

I was able to drive 6 weeks after surgery but chose not to drive until 8 weeks after surgery. My advice for recuperation – Do Not Push It! Pain did not always register as pain. It felt more like tightness or pressure. It tells you to lay down. Obey the pain. I went back to work running a dance studio during quarantine a month after surgery. I worked from my computer, usually laying down. I liked working from home because it made me feel productive and took my mind off of the fear that I was always going to feel weak, that I was never going to feel healthy again, my fear of the medications and their effects, the fear of looking at my incision ( I did not look at it for 3 months because I am ridiculously squeamish. I cleaned it, had my husband make sure it looked ok but I couldn't look at it:)
It took longer than I thought to feel strong again. But it comes. Don't rush the body, it knows what it is doing. The body is AMAZING and has knowledge beyond our imaginings – listen to it. Rest. And all the things I worried about did not come to pass. Such a waste of life energy I could have used to heal rather than worry. I adjusted well to my meds and have had very few problems. I had some cramping and diarrhea, which I reported to my doctor and he lowered my meds immediately and everything cleared up. The scar no longer bothers me. I found swimming to be the best way to build up my strength, which I began doing 4 months after surgery. I also highly recommend physical therapy to get your strength back in a healthy way.

I also recommend journaling. An organ transplant is a big deal and there are a lot of emotions to process. My body thought it was dying before the surgery. And technically it was. So the mind prepares for death, with memories of my life, gratitude for the love, remorse for the mistakes. It is a lot to process, Then a human, that I had met only once or twice, said "Sure! You can open my body and take out one of my organs and place it in your body, so you may live!" Which is amazing! And also, a lot of emotions to process. Then a medical staff, which has devoted their entire lives to save lives, devotes itself to saving your life. Which is a testimonial to the human spirit. And also a lot of emotions to process. Then your body, which has been slowly dying, suddenly begins to slowly heal. Heal! Hallelujah! How does one process all of this? Journal. Talk to people, who have experienced it. Talk to a counselor. Pray. Whatever allows you to process this most amazing of journeys!

I wish you all the best, my PKD friend!
Stephanie

PS – I forgot to mention, my brain was a bit foggy for a few months after surgery. I read, did crossword puzzles and played online solitaire to get it to click back into gear. But not until about 2-3 months post-surgery.

REPLY
@stephanierp

Hello Jennifer!
A week until surgery, is exciting and a bit terrifying, all at the same time! I too have PKD, and I had a transplant and single nephrectomy 10 months ago at IU Hospital. So I will share my story, but not sure that you will experience the same things I did. I am thrilled you are getting both of those suckers out at once with Dr Prieto! It is definitely the way to go! And I send a prayer of thanksgiving, grace and honor to your donor!

I went public with my request for a kidney in 2017 and was amazed as people came forward! Like an extreme episode of "This is Your Life," people from every phase of my life came forward to offer me the gift of life. It is spectacular how wonderful humans can be, especially when we hear, so often, the opposite.
I, too, found a donor, was taken off the list when my function bumped up above 20, and then my donor and I had to be retested to get everything going again. It was a total of six months to be matched, and then three years before the actual transplant took place.

I had a single room after surgery. I am sure with COVID, the hospital staff are taking serious steps of masks, hand cleaning, etc. But ultimately you are your own best advocate. If someone (medical, cleaning services, meal services) enters your room coughing, forgets to wash hands or put on new gloves, or looks ill, etc – stop them and remind them to change gloves, masks, or ask them to leave and send someone in their place. It is a bit awkward to self-advocate, but I treat my new kidney like a constant pregnancy – I am housing a gift that I protect to the best of my ability. Which means, sometimes I have to enter the land of awkward, but I do it to protect my best chance of meeting my grandchildren one day.

Pain management was a bit of an issue with me, because once they moved me from IV meds to oral pain meds, I had to ask for the meds before they were administered. But no one explained this to me, when this switch occurred, or if they did I was looped out and didn't understand. So if I slept through pain med time, I did not get meds, which put me behind the pain, which is not where you want to be. Every four or six hours, whatever is prescribed. Set the timer on your phone. Stay ahead of the pain and you will be good. I think I was treated, at times, as a kidney transplant patient, rather than a kidney transplant and nephrectomy patient. The two are very different beasts! I do not believe this will be your experience with Dr Prieto, as your surgeon, but just wanted to put it out there, as something I wish I had known ahead of time. Also, eat something (broth, toast, soup) because the meds are worse on your system without food.

The weirdest part for me was the feeling of things sloshing around inside when I moved. When the large PKD kidneys are removed, there is extra space in the body and the body does not love that:) But it gets better every day. I found it best to wear the abdomen wrap whenever I sat or walked and took it off when I was resting. I was not able to lay on my side for probably 6 weeks. Just long enough to think, "Well, maybe this is it. Maybe I will never be able to sleep on my side again." But it, like everything else, just keeps getting better. Just slower than I thought it would.

I had my surgery in February, a month before all the lock-downs for COVID. So at first, I went to the hospital 3 times a week for blood-work and to be seen by my surgeon. I would go to the hospital, get blood-work, before I took anti-rejection drugs. Then I went to a room with beds and other patients, with curtains between to wait for results and the surgeon. I did this for 2 weeks and then I went home (3 hours away) and my husband drove me in twice a week for 2 weeks.
Then COVID hit and everything got locked down. So I did blood-work locally two times a week (have to call in ahead of time for appointments now with COVID) and did Zoom meetings with my doctor and follow-up team from home to go over the results. My team is amazing and stayed on top of everything! I did this for 4 months and then started going in to see my doctor once a month for 2 months and now I have blood drawn once a month and meet with my doctor once every three months, unless I have an issue.

I was able to drive 6 weeks after surgery but chose not to drive until 8 weeks after surgery. My advice for recuperation – Do Not Push It! Pain did not always register as pain. It felt more like tightness or pressure. It tells you to lay down. Obey the pain. I went back to work running a dance studio during quarantine a month after surgery. I worked from my computer, usually laying down. I liked working from home because it made me feel productive and took my mind off of the fear that I was always going to feel weak, that I was never going to feel healthy again, my fear of the medications and their effects, the fear of looking at my incision ( I did not look at it for 3 months because I am ridiculously squeamish. I cleaned it, had my husband make sure it looked ok but I couldn't look at it:)
It took longer than I thought to feel strong again. But it comes. Don't rush the body, it knows what it is doing. The body is AMAZING and has knowledge beyond our imaginings – listen to it. Rest. And all the things I worried about did not come to pass. Such a waste of life energy I could have used to heal rather than worry. I adjusted well to my meds and have had very few problems. I had some cramping and diarrhea, which I reported to my doctor and he lowered my meds immediately and everything cleared up. The scar no longer bothers me. I found swimming to be the best way to build up my strength, which I began doing 4 months after surgery. I also highly recommend physical therapy to get your strength back in a healthy way.

I also recommend journaling. An organ transplant is a big deal and there are a lot of emotions to process. My body thought it was dying before the surgery. And technically it was. So the mind prepares for death, with memories of my life, gratitude for the love, remorse for the mistakes. It is a lot to process, Then a human, that I had met only once or twice, said "Sure! You can open my body and take out one of my organs and place it in your body, so you may live!" Which is amazing! And also, a lot of emotions to process. Then a medical staff, which has devoted their entire lives to save lives, devotes itself to saving your life. Which is a testimonial to the human spirit. And also a lot of emotions to process. Then your body, which has been slowly dying, suddenly begins to slowly heal. Heal! Hallelujah! How does one process all of this? Journal. Talk to people, who have experienced it. Talk to a counselor. Pray. Whatever allows you to process this most amazing of journeys!

I wish you all the best, my PKD friend!
Stephanie

PS – I forgot to mention, my brain was a bit foggy for a few months after surgery. I read, did crossword puzzles and played online solitaire to get it to click back into gear. But not until about 2-3 months post-surgery.

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@stephanierp Thank you for your amazing story! We have not heard from many transplant/nephrectomy patients. How inspiring you are!
Ginger

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