Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@msgtrebholtz

Hello all, I am posting here basically to say hi. I wanted to read from others what they have gone through so I am glad I found this site. I am a 52 year old white male that lives in MN. I had UC for many years and got to the point where my colon cancer threat was very high so in July of 2017 I had my colon, rectum and anus removed and a permanent Ileostomy made. That's just background info, not why I am here. Along with my UC there were issues with my gallbladder, a huge duct cyst and I found out I had PSC. I had my gallbladder and cyst removed and duct reconstructed. The PSC will progress to the point where I will need a liver transplant sometime in the (hopefully distant) future. I appreciate all your insight and thank you for letting me tag along. Jason

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Hi @msgtrebholtz. Jason, I'd like to add my welcome. It's so nice when people find Mayo Clinic Connect at the beginning of their journey to help prepare, ask questions and get support. I say beginning, but this is not really a beginning is it? It's just the beginning of learning about transplant. You have vast experience with ulcerative colitis, colon surgery, ostomy and more that I'm sure will benefit other members who are beginning those journeys. I invite you to also follow these support groups on Connect:
– Digestive Health https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/
– Ostomy https://connect.mayoclinic.org/group/ostomy/

Your knowledge and experience will be welcome.

Jason, when were you diagnosed with PSC? How is your health today?

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@msgtrebholtz

Hello all, I am posting here basically to say hi. I wanted to read from others what they have gone through so I am glad I found this site. I am a 52 year old white male that lives in MN. I had UC for many years and got to the point where my colon cancer threat was very high so in July of 2017 I had my colon, rectum and anus removed and a permanent Ileostomy made. That's just background info, not why I am here. Along with my UC there were issues with my gallbladder, a huge duct cyst and I found out I had PSC. I had my gallbladder and cyst removed and duct reconstructed. The PSC will progress to the point where I will need a liver transplant sometime in the (hopefully distant) future. I appreciate all your insight and thank you for letting me tag along. Jason

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Hello Jason! We are the same age. I’m a female though! Had a liver transplant in 2015,mid summer!. I was 47 yrs. old. I’m from Maryland so I got to choose between Johns Hopkins or University of Maryland. Kinda started at Hopkins and ended at University!! Welcome and feel free to “tag along”

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@msgtrebholtz

Hello all, I am posting here basically to say hi. I wanted to read from others what they have gone through so I am glad I found this site. I am a 52 year old white male that lives in MN. I had UC for many years and got to the point where my colon cancer threat was very high so in July of 2017 I had my colon, rectum and anus removed and a permanent Ileostomy made. That's just background info, not why I am here. Along with my UC there were issues with my gallbladder, a huge duct cyst and I found out I had PSC. I had my gallbladder and cyst removed and duct reconstructed. The PSC will progress to the point where I will need a liver transplant sometime in the (hopefully distant) future. I appreciate all your insight and thank you for letting me tag along. Jason

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By the way “Raowdy Ramsey” is my dog. My name is Ramona. My dog ,Ramsey, is a collie and a present to me after surviving the transplant. He’s been at my side every minute since! WELCOME

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@rosemarya

@rowdyramsey, Tacrolimus is one of the medicines that I also take for my Liver and kidney transplant. In fact have taken it for 11 years now and have not noticed any rash or blisters as you describe. It sounds like this was in the past, -I sure hope so.

Unrelated to tacrolimus -I want to add that I am from a family who sweats alot when active, and I have developed an itchy redness after wearing my sun hat, and along areas lere my clothing fits snug and wet with sweat especially during summertime hiking. Scratching makes it more uncomfortable, and I didn't want to cause any open areas, so I (ready for this?) use a little bit of foot powder – the OTC powder for athletes foot care – and it works to cure the itch. A dermatologist suggested that I try it.

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Funny you would say foot powder Rosemary. My WOC nurse told me to use foot powder around my stoma when I get red bumps, like a heat rash. It does work very well. She told me she could get me a script for it or just go buy generic foot powder with 1% Miconazole and you will be good to go. I bet I use it every 4th or 5th wafer change. It is fantastic!

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@colleenyoung

Hi @msgtrebholtz. Jason, I'd like to add my welcome. It's so nice when people find Mayo Clinic Connect at the beginning of their journey to help prepare, ask questions and get support. I say beginning, but this is not really a beginning is it? It's just the beginning of learning about transplant. You have vast experience with ulcerative colitis, colon surgery, ostomy and more that I'm sure will benefit other members who are beginning those journeys. I invite you to also follow these support groups on Connect:
– Digestive Health https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/
– Ostomy https://connect.mayoclinic.org/group/ostomy/

Your knowledge and experience will be welcome.

Jason, when were you diagnosed with PSC? How is your health today?

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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

Hello all, I am posting here basically to say hi. I wanted to read from others what they have gone through so I am glad I found this site. I am a 52 year old white male that lives in MN. I had UC for many years and got to the point where my colon cancer threat was very high so in July of 2017 I had my colon, rectum and anus removed and a permanent Ileostomy made. That's just background info, not why I am here. Along with my UC there were issues with my gallbladder, a huge duct cyst and I found out I had PSC. I had my gallbladder and cyst removed and duct reconstructed. The PSC will progress to the point where I will need a liver transplant sometime in the (hopefully distant) future. I appreciate all your insight and thank you for letting me tag along. Jason

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@msgtrebholtz Hi, Jason, I too welcome you to Connect, particularly to the liver transplant group. I had my transplant in September, 2016, at Mass General Hospital.
You have already been through quite a lot, that's for sure, but you have a great positive attitude. I am glad things are going so well now.
I agree with you, I wish I had been aware of this group when I was pre-transplant. It is always helpful to have contact with people who have or have had similar circumstances.

@rowdyramsey Ramona, I think you are correct, that tacrolimus must be the best immunosuppressant for liver transplant recipients. It seems to be what everyone is initially prescribed. Then some of us, me included, have problems that require a different immunosuppressant. Tacrolimus was causing my creatinine numbers to be high. We tried battling that by drinking a lot of fluid daily — 80 – 100 ounces — but the high numbers persisted so I was changed to sirolimus. That has worked out well for me. I never had any problem with tacrolimus that I felt though, but I have heard of many people who do have problems with it.
JK

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@contentandwell

@msgtrebholtz Hi, Jason, I too welcome you to Connect, particularly to the liver transplant group. I had my transplant in September, 2016, at Mass General Hospital.
You have already been through quite a lot, that's for sure, but you have a great positive attitude. I am glad things are going so well now.
I agree with you, I wish I had been aware of this group when I was pre-transplant. It is always helpful to have contact with people who have or have had similar circumstances.

@rowdyramsey Ramona, I think you are correct, that tacrolimus must be the best immunosuppressant for liver transplant recipients. It seems to be what everyone is initially prescribed. Then some of us, me included, have problems that require a different immunosuppressant. Tacrolimus was causing my creatinine numbers to be high. We tried battling that by drinking a lot of fluid daily — 80 – 100 ounces — but the high numbers persisted so I was changed to sirolimus. That has worked out well for me. I never had any problem with tacrolimus that I felt though, but I have heard of many people who do have problems with it.
JK

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My liver doctor told me that it was the best. I have no clue what’s better! When I was having those rashes so bad,the doctor would not change my meds , (Tac) because he said it was the strongest and “best” one out there. They were not willing to take me off the Tac. no matter how bad my rashes got. Who knows! God bless

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@gaylea1

@rowdyramsey my transplant was Nov 28th 2018. Initially I was taking 5mg tac every 12 hours but it was reduced to 1mg every 12 hours after about 4 months. I have never had any problem with it at all. My doctors did insist that I take only Prograf and not any generic kind.

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You mean Prograf is better then tacolomus? Do u know why?

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@rowdyramsey

You mean Prograf is better then tacolomus? Do u know why?

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@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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@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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@rowdyramsey

So,Tac.is considered as old as Prograf?

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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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@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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