Pending liver transplant

I was diagnosed with PSC in 1998. Also had Crohn’s disease and have an ileostomy since 2010. Progression of the PSC now has indicated liver transplantation. I would like to ask anyone that has undergone transplant for their thoughts and comments please. I am to go into hospital on the 10th March for a week of pre transplant assessment. I am in Adelaide, South Australia.

My pre transplant assessment was done just weeks before the operation. At the time, I had just been accepted to the"transplant list" as we call it here in the US. It is a waiting list for a cadaver source liver. We knew that it was likely to be a long wait. My health had deteriorated, and we had begun looking for a live donor. My daughter created a Facebook page about my condition that she shared with her Facebook friends. A childhood friend read the story. She was the 4th person tested and was a perfect match. In about two weeks after she was identified, we had simultaneous surgeries. We just celebrated our third anniversary of the transplant. We both are doing fine and my hepatologist describes my liver as a "superstar."

It helps to love life and not to dwell on your disease. See beyond it to what life will have to offer after the transplant. It will get you through all the steps you will take. A live donor organ transplant takes longer to get you up and operating like yourself because it has to grow, which takes a lot of calories and energy. In 5 months I got my energy back and I began driving myself places and being normally active. To this day, my skin tingles when I think about how bad off I was and how wonderful life is for me now. The doctors and hospital staff were wonderful to me. My wife and daughter were my caregivers. There is no way to fully thank them for all that they did. My donor is a special person in my life. I tell her that she is related by blood to me, but I'm not related to her. That brings a, "what? how can that be?" followed by laughter. The second thing we laugh about is that we call our transplant anniversary our "liver reunion." Both halves get together and have a grand dinner with our families.

I imagine your pre-transplant tests will be much like mine. Of course, they screen for any cancer along with cardio and pulmonary testing. There is psychological testing and evaluation of your general health aside from your liver disease. I'm sure I am missing a few. There are many, including your family meeting with a social worker to assess your support system. It sounds like transplantation is near for your. Good luck and my prayers are with you.

Hi Queenb
I had a liver transplant 2 yrs ago. My pre-assessment was for two days and was out patient in Vancouver Canada. I saw a dentist, psychologist, social worker, anesthesiologist, and the surgeon. They are looking to make sure you understand what is going on and will be compliant with the post operative medication regime.
After these assessments, they will get together and discuss the case and decide to put you on the active wait list. We have a choice of carrying a pager or using your cell phone. PSC do much better with transplants as we do not have many of the life style issues and are healthier otherwise.

After surgery, you are in hospital 2+ weeks as they get you walking, eating and taking your meds. It is pretty brutal. I lost my appetite and could not keep much down for days. Afte leaving hospital, they watch you closely as the biggest time of rejection is the first 30 days then 3 month mark. I had to stay in Vancouver for 3 months close to the hospital and go to the hospital at first twice a week for a check. Then it was every 2 weeks, and soon after it was blood work every month and I could return to Victoria where I live. There is a regime of meds and supplements including the anti rejection meds, vitamins, magnesium, stomach acid reducer (as the anti rejection meds are very harsh) and because they keep me awake, a sleep aid. I was on prednisone as well at first, but they reduced it quickly and I was off it in 4 months.

Mine was a live donor transplant and that took the guess work out of the date as it was booked surgery. Like you, I have had complications with bowl disease and had mine removed in my 20’s. I have a J-pouch rather than the iliostomy. For the transplant, I had 2 - 10 hour surgeries. The second one was to finish the transplant and remove adhesions and a section of small intestine cut off by adhesions. These not only gave me the transplant, but cleared up many other issues.

If you have any more questions, just ask.
Ruby

Thank you for your valuable input and prayers Paul, it is good to connect with other people that have been through the same situation, I will now feel a little more confident with the assessment procedure…take care…X



Paul Hain said:

My pre transplant assessment was done just weeks before the operation. At the time, I had just been accepted to the"transplant list" as we call it here in the US. It is a waiting list for a cadaver source liver. We knew that it was likely to be a long wait. My health had deteriorated, and we had begun looking for a live donor. My daughter created a Facebook page about my condition that she shared with her Facebook friends. A childhood friend read the story. She was the 4th person tested and was a perfect match. In about two weeks after she was identified, we had simultaneous surgeries. We just celebrated our third anniversary of the transplant. We both are doing fine and my hepatologist describes my liver as a "superstar."

It helps to love life and not to dwell on your disease. See beyond it to what life will have to offer after the transplant. It will get you through all the steps you will take. A live donor organ transplant takes longer to get you up and operating like yourself because it has to grow, which takes a lot of calories and energy. In 5 months I got my energy back and I began driving myself places and being normally active. To this day, my skin tingles when I think about how bad off I was and how wonderful life is for me now. The doctors and hospital staff were wonderful to me. My wife and daughter were my caregivers. There is no way to fully thank them for all that they did. My donor is a special person in my life. I tell her that she is related by blood to me, but I’m not related to her. That brings a, “what? how can that be?” followed by laughter. The second thing we laugh about is that we call our transplant anniversary our “liver reunion.” Both halves get together and have a grand dinner with our families.

I imagine your pre-transplant tests will be much like mine. Of course, they screen for any cancer along with cardio and pulmonary testing. There is psychological testing and evaluation of your general health aside from your liver disease. I’m sure I am missing a few. There are many, including your family meeting with a social worker to assess your support system. It sounds like transplantation is near for your. Good luck and my prayers are with you.

Hi Ruby…thank you for your valuable input…it gives me confidence to know that others have undergone surgery and come out with such a positive attitude…I will endeavour to maintain a healthy focus and your words have certainly given me much to think about…thank you once again…X.



Ruby said:

Hi Queenb
I had a liver transplant 2 yrs ago. My pre-assessment was for two days and was out patient in Vancouver Canada. I saw a dentist, psychologist, social worker, anesthesiologist, and the surgeon. They are looking to make sure you understand what is going on and will be compliant with the post operative medication regime.

After these assessments, they will get together and discuss the case and decide to put you on the active wait list. We have a choice of carrying a pager or using your cell phone. PSC do much better with transplants as we do not have many of the life style issues and are healthier otherwise.



After surgery, you are in hospital 2+ weeks as they get you walking, eating and taking your meds. It is pretty brutal. I lost my appetite and could not keep much down for days. Afte leaving hospital, they watch you closely as the biggest time of rejection is the first 30 days then 3 month mark. I had to stay in Vancouver for 3 months close to the hospital and go to the hospital at first twice a week for a check. Then it was every 2 weeks, and soon after it was blood work every month and I could return to Victoria where I live. There is a regime of meds and supplements including the anti rejection meds, vitamins, magnesium, stomach acid reducer (as the anti rejection meds are very harsh) and because they keep me awake, a sleep aid. I was on prednisone as well at first, but they reduced it quickly and I was off it in 4 months.



Mine was a live donor transplant and that took the guess work out of the date as it was booked surgery. Like you, I have had complications with bowl disease and had mine removed in my 20’s. I have a J-pouch rather than the iliostomy. For the transplant, I had 2 - 10 hour surgeries. The second one was to finish the transplant and remove adhesions and a section of small intestine cut off by adhesions. These not only gave me the transplant, but cleared up many other issues.



If you have any more questions, just ask.

Ruby

I had my transplant 9 years ago. I was lucky with few complications post surgery. I had PSC that developed into bile duct cancer. So I had to undergoe treatment for that first. Most of my stress was from knowing that if there was any evidence of the cancer spreading it. woulld disqualify me. Evern during the transplant surgery itself. Looking back, I grew as a person through this experience…I wouldn’t have it anyother way. What I found the most helpful through it was asking others to pray for me. I drew a lot of strength from knowing so many people were praying for me. Best wishes