1. < Transplants

Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 26, 2020
In reply to @msgtrebholtz "I really appreciate the warm welcome from all. Thank you! I was diagnosed with PSC when..." + (show)
@msgtrebholtz

I really appreciate the warm welcome from all. Thank you!
I was diagnosed with PSC when I started having the gallbladder issues. Technically it wasn't the gallbladder, but a duct cyst that would inflate with bile then whenever it felt like it he would rapidly drain into my stomach (approx 200cc) . I can only describe what would happen next by saying I would have given Linda Blair in the exorcist a run for her money on the projectile vomiting. That was sometime in the spring of '14 and had it all removed in December of '14 - Merry Christmas!! LOL
I have read that UC and PSC are buddies and generally come along at the same time. My UC started in March of 2010. It actually began because of a bout of food poisoning. I am told that an event can trigger it if it is already there but dormant. If they did start at a similar time then I have had it 10 years give or take.
As for my health it is good. My liver is asymptomatic. All my liver function tests have always been in the normal range. Since I dont have a colon my UC is cured. The only real issues I have are problems with skin, most notably around my ostomy, but I am slowly working out what works well and doesn't.
I dont know if anyone here is in Rochester, but I am in Dr Poterucha PSC surveillance group. He is a great guy and has a super bedside manor. I could chat with him all day.
I am so happy to have found this site. I wish I knew about you earlier, but I am here now. Thank you all again for welcoming me. This has been great so far!

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@msgtrebholtz, Small world! I do know Dr Poterucha, or at least I remember seeing him when I was in the hospital in Feb. 2009! I I was transported to Mayo Rochester from ICU in KY, and on my first morning, I remember seeing a figure in white holding a clipboard and standing at the foot of my bed. He removed my feeding tube, and told me that if I didn't eat, he would have to reinsert it. Later my husband told me who it was.
I was sent to Mayo Rochester because of my PSC. I return annually for my check-up and I celebrated my 11th transplant anniversary this past week! You are in the best place for your care.
What is a surveillance group? Is it a research?

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jacinta | @jacinta | Apr 25, 2020
In reply to @gaylea1 "@jacinta I was worried about a liver transplant too. When I was told it was inevitable..." + (show)
@gaylea1

@jacinta I was worried about a liver transplant too. When I was told it was inevitable I reached out to this group. That was almost 3 years ago. I am now 1 1/2 years post transplant. Trust your doctors and always feel free to ask any questions to this group. Everyone is wonderful, full of tips and great advice. It is a scary process but we're here for you to lean on ❤🇨🇦

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Thank You

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jacinta | @jacinta | Apr 25, 2020
In reply to @rosemarya "@jacinta, You sound like a strong and determined patient. I hope that you get results that..." + (show)
@rosemarya

@jacinta, You sound like a strong and determined patient. I hope that you get results that will lead to a positive treatment for you.
Was the doctor's message a surprise? Did you know there was a tumor in the bile area?

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I was surprised by the tumor. I should know the results next week. What’s hard on me is I don’t have any family in the U.S.

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 25, 2020
In reply to @jacinta "I have had ERCPS since 1990 which helped with that awful scratching. However, the Doctor told..." + (show)
@jacinta

I have had ERCPS since 1990 which helped with that awful scratching. However, the Doctor told me yesterday that the ERCPs days are over as I’m not getting a year out of them anymore. I have a tumor in the bile area. . . Won’t know the results until next week.

I’m worried about getting a liver transplant.

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@jacinta, You sound like a strong and determined patient. I hope that you get results that will lead to a positive treatment for you.
Was the doctor's message a surprise? Did you know there was a tumor in the bile area?

REPLY
1 reply
gaylea1 | @gaylea1 | Apr 24, 2020
In reply to @jacinta "I have had ERCPS since 1990 which helped with that awful scratching. However, the Doctor told..." + (show)
@jacinta

I have had ERCPS since 1990 which helped with that awful scratching. However, the Doctor told me yesterday that the ERCPs days are over as I’m not getting a year out of them anymore. I have a tumor in the bile area. . . Won’t know the results until next week.

I’m worried about getting a liver transplant.

Jump to this post

@jacinta I was worried about a liver transplant too. When I was told it was inevitable I reached out to this group. That was almost 3 years ago. I am now 1 1/2 years post transplant. Trust your doctors and always feel free to ask any questions to this group. Everyone is wonderful, full of tips and great advice. It is a scary process but we're here for you to lean on ❤🇨🇦

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1 reply
joanaiken | @joanaiken | Apr 24, 2020

Best wishes for a good outcome.

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jacinta | @jacinta | Apr 24, 2020

I have had ERCPS since 1990 which helped with that awful scratching. However, the Doctor told me yesterday that the ERCPs days are over as I’m not getting a year out of them anymore. I have a tumor in the bile area. . . Won’t know the results until next week.

I’m worried about getting a liver transplant.

REPLY
2 replies
rowdyramsey | @rowdyramsey | Apr 23, 2020
In reply to @rosemarya "This is a great question, @rowdyramsey, and @gaylea is correct. Tacrolimus is a generic version and..." + (show)
@rosemarya

This is a great question, @rowdyramsey, and @gaylea is correct.
Tacrolimus is a generic version and cheaper. I used to be on Prograf (brand name) and was switched to the Tacrolimus when it (generic) became available. My labs and I did not experience any changes, although my costs were reduced!
I have been taking Tacrolimus for most of almost all of my 11 years with my transplant. And still do today.
I have a routine prograf lab kit that is tested at Mayo to monitor the level of prograf in my blood. It has to be within a target range that is individual for every patient and organ. On occation my dosage has been adjusted to keep me at the best level for me. Not too high, Not too low, but just right. 😊
What have your doctors said about the rash? Do they think there is a connection to the medication? Other than the rash, How are you getting along?

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Thanks for that info.! Sounds just like me. Yes,the doctors have said the rashes were from the Tac. Since they dropped me to 4 mil.a day, the rashes have,for the most part,gone away. Now they are about the size of a silver dollar. I will take that anyday over what I went through before they dropped my dose. They use to get as wide and as big as my foot! I’m a size 10 wide!!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 23, 2020
In reply to @rowdyramsey "So,Tac.is considered as old as Prograf?" + (show)
@rowdyramsey

So,Tac.is considered as old as Prograf?

Jump to this post

This is a great question, @rowdyramsey, and @gaylea is correct.
Tacrolimus is a generic version and cheaper. I used to be on Prograf (brand name) and was switched to the Tacrolimus when it (generic) became available. My labs and I did not experience any changes, although my costs were reduced!
I have been taking Tacrolimus for most of almost all of my 11 years with my transplant. And still do today.
I have a routine prograf lab kit that is tested at Mayo to monitor the level of prograf in my blood. It has to be within a target range that is individual for every patient and organ. On occation my dosage has been adjusted to keep me at the best level for me. Not too high, Not too low, but just right. 😊
What have your doctors said about the rash? Do they think there is a connection to the medication? Other than the rash, How are you getting along?

REPLY
1 reply
rowdyramsey | @rowdyramsey | Apr 23, 2020
In reply to @gaylea1 "@rowdyramsey Prograf is tacrolimus but not a generic form. There are various generic forms of tacrolimus...." + (show)
@gaylea1

@rowdyramsey Prograf is tacrolimus but not a generic form. There are various generic forms of tacrolimus. Prograf is the name brand, the original, thus more expensive than the generic.

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So,Tac.is considered as old as Prograf?

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