Kidney Transplant: Questions as I prepare for transplant

@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!

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.

@jennifer0726
My thoughts and prayers are with you! 🙂

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

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.