Timing of Liver Transplant for PSC

Posted by saratodd @saratodd, Jul 22 10:05pm

Hi! My husband is tentatively scheduled to receive a living donor transplant on Aug 3. I'd love to hear "real life" stories of what to expect after the surgery. We have a daughter who just turned 2 and I am due with our second baby Sept 7. We know that's cutting it very close, but felt it would be better to have the surgery before the new baby is born. He is 36 and otherwise healthy (aside from Ulcerative Colitis), so his doctors are very encouraging about his recovery.

Hi. I can offer some insight. I'm 49 year old male and had my liver transplant in Arizona Mayo on the 25th of May this year, so I am almost 2 months out. I also am an ulcerative colitis patient and later developed PSC in the liver. Only difference is that I received an organ from a deceased donor. My hospital stay lasted 1 day in intensive care, 4 days in regular room and was discharged after a week. I could walk, lay down, get up and use the bathroom by myself. It is very important for you as a caregiver to really understand the medication dosage and the regime that it has to be followed, because in the beginning there are lots of them. The medication includes some type of cortisone which also helps with colitis.

After about 3 weeks I had my staples taken out and felt more free to move around and take walks regularly. It is imperative that the follow-up labs are done in order to adjust the medication accordingly. Having said all this, of course every patient has his/her unique metabolism and post-ops might go differently. Entering into surgery in relatively good condition is also a benefit for post-op (in my case I was the same) but, you are advised not to overextend yourself just because you feel better after the surgery.

If you might have other questions please do not hesitate to ask because due to the nature of the illness there are not so many patients with PSC. I wish all the best for you and your family and will pray for speedy recovery.

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Do you know what meds he will be on? The most important thing for you to know is that many of the anti rejection drugs can cause birth defects just by handling them. I recommend you get a box of medical gloves just in case. I was on a high dose of prednisone at first and my husband had to manage my drugs because my brain was mush for the first month. We are in our sixties so it wasn’t an issue for us, but I have a standing rule when my kids visit no one touches my meds. One other thing – my husband used a baby monitor to keep track of me while I was resting. Gave him some freedom and a lot of peace of mind. Good luck to both of you!

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I transplanted in 2009 for PSC at age of 60.
My experience was a little different – I did not have UC, but did experience acute kidney failure and was on dialysis before transplant. So I was very weak and fragile pre-transplant. Having said that, I received both organs from a deceased donor in one surgery. Immediately upon awakening from my surgery I felt as if someone had flipped a switch inside of me and I could feel a difference. My son called out that I was not yellow anymore. My surgery was on a Wed evening, and on Thursday afteroon I was rolled out if recovery/ICU to my room – sitting in a wheelchair while sipping on a milkshake! On Friday morning, I had a light breakfast and was helped out of bed for my first walk. Each day I felt better, more alert, and stronger than the day before.
During my hospital recovery time, my husband and I were given instructions and guided thru my early recovery process. @svezir, has already shared the importance of caregiver/patient understanding of the importance of follow-up labs as well as medication regime.
I had my transplant at Mayo Rochester, and we stayed at the Gift 0f Life House, where we had been living for the previous 2 months. This was very convenient because after transplant there will be frequent labs and follow up appointments. On Day 21 post transplant we were discharged to return to our home in Kentucky.

Your husband is your and active and healthy. I remember being told by my GI, early in my diagnosis of PSC, that PSC patients do well because they have learned to be proactively healthy and active before/if their PSC progresses to liver failure. It sounds as if his doctors are OK with this schedule, and that is a good sign.

I am going to look at my journal later today, and see if I have any specific recovery notes to share.
Is your husband planning to be active in your delivery and baby's care? What are the transplant doctors saying about that due to his immunosuppression?

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@rosemarya

I transplanted in 2009 for PSC at age of 60.
My experience was a little different – I did not have UC, but did experience acute kidney failure and was on dialysis before transplant. So I was very weak and fragile pre-transplant. Having said that, I received both organs from a deceased donor in one surgery. Immediately upon awakening from my surgery I felt as if someone had flipped a switch inside of me and I could feel a difference. My son called out that I was not yellow anymore. My surgery was on a Wed evening, and on Thursday afteroon I was rolled out if recovery/ICU to my room – sitting in a wheelchair while sipping on a milkshake! On Friday morning, I had a light breakfast and was helped out of bed for my first walk. Each day I felt better, more alert, and stronger than the day before.
During my hospital recovery time, my husband and I were given instructions and guided thru my early recovery process. @svezir, has already shared the importance of caregiver/patient understanding of the importance of follow-up labs as well as medication regime.
I had my transplant at Mayo Rochester, and we stayed at the Gift 0f Life House, where we had been living for the previous 2 months. This was very convenient because after transplant there will be frequent labs and follow up appointments. On Day 21 post transplant we were discharged to return to our home in Kentucky.

Your husband is your and active and healthy. I remember being told by my GI, early in my diagnosis of PSC, that PSC patients do well because they have learned to be proactively healthy and active before/if their PSC progresses to liver failure. It sounds as if his doctors are OK with this schedule, and that is a good sign.

I am going to look at my journal later today, and see if I have any specific recovery notes to share.
Is your husband planning to be active in your delivery and baby's care? What are the transplant doctors saying about that due to his immunosuppression?

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@rosemarya isn't it funny how the first thing your kids notice is that you're not yellow anymore! My kids were the same ❤

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@saratodd, I'm going to respond as a mom, not a transplant recipient or caregiver. Knowing that your baby is due to arrive one month after your husband's transplant, I would give some thought to nighttime parenting. My husband is a bear (not the cuddly kind) if he doesn't get enough sleep. I can run on little or interrupted sleep. So we determined from the beginning that I would be the nighttime parent, but that he would cater to ME during the day while I took care of the baby. That might not be possible in your situation. Do you have other people who can cater to YOU during the day, make meals or mind the baby for short periods during the day?

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@gaylea1

@rosemarya isn't it funny how the first thing your kids notice is that you're not yellow anymore! My kids were the same ❤

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@rosemarya and @gaylea1
Ha, me too. My husband took a picture of me sleeping in ICU and you can see patches of pink skin showing up through the yellow. Fully detoxed and un-yellowed 24 hours post transplant.

Liked by tasher3433

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Such great news! My husband had a deceased donor transplant on 2-9–2020, 6 weeks before my daughters wedding…so we packed major Life events into a short period of time as well. We stayed at gift of life and had offers to let me come home or trade out caregivers in that first month. For me though it was very important to be at his appointments and as others have mentioned, manage and KNOW the meds. I felt I was neglecting my son who was at home, but for me, it was more important that I was with my husband and get him well. My advice- don’t feel guilty about doing what YOU need to do at the time. You won’t be able to do it all. Let others take care of what you can’t. Make sure you eat and drink water. Take walks. Listen to uplifting music. Rest as much as you can, the first couple of weeks were exhausting for us both, and I imagine you will be too with a little one on the way.

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Hi, @saratodd. I am thinking about you and wondering how you are getting along. Will your husband have surgery next week?
I imagine that your head is spinning with preparations and childcare. Do you have any last minute concerns or questions that you would like to ask?

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