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!

@jerrydrennan

@stella25
When I was told that o needed a liver transplant for cancer. I could get a living donor and shorten the process. I would have to undergo unos protocol. Chemoradiation and brachey treatment be a accepted by unos as a candidate. My niece was the closest match after 5 days of testing at the Mayo in Rochester. They determined the liver size was not adequate for me. But if it was good we could of schedule surgery for transplant. I was at a 25 meld score. I was transplanted at 33 meld deceased donors.
Hope this helps.
God Bless

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@jerrydrennan I just checked back and saw that you received your transplant in September, very close to my own "transplantiversary", September 23. Are you back in full swing at this point? I didn't realize that they do transplants for liver cancer. As Rosemary commented, I am in the dark about it, is there any follow-up with any other cancer treatments?
It's so great to finally be on the other side of your liver problems. How did liver cancer effect you prior to transplant? Are there similarities to the problems of cirrhosis since the liver is probably not functioning well when it is cancerous?
JK

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@rosemarya

Jerrydrennan, I am happy to hear that you recieved your liver transplant. Your niece is an amazing person to have offered, and undergone the evaluation to be your donor. I have extreme respect and admiration for her.
Jerry, how are you doing since transplant surgery? Do you have to undergo any extra treatment because of the cancer? I don't know how that all works.

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@rosemarya @contentandwell

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@contentandwell
@rosemarya
I had my transplant Sept. 19 officially. The transplant went great. I was walking day 0
Released on day5.
On Sept 30 my niece who tried to be the donor have my brother a break from caretaker for me. That night I passed out will staying at GOL house. Casey called 911,, went to st Mary's hospital have a hemorrhagic bleed in the body. Hyplexia anemia. And alot of other hyplexia stuff. Under went massive transfusions.
30 pts of blood , platelet, and fluids. Was not good had several teams work g on a way to stop the bleed. I am very fortunate to have had Casey with me , she helped with 911 and was able to give them a detail info to the paramedics and Drs at the ER. Until my brother showed up. 5 days in ICU then 10 days recovery. Went backwards. I am doing good now. I have been reading the connect but I guess I haven't responded to it. Sorry
I was diagnosed with prehillar Chalangiocarsanoma.
That's why the transplant. I am blessed.
Jerry Drennan

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@jerrydrennan

@contentandwell
@rosemarya
I had my transplant Sept. 19 officially. The transplant went great. I was walking day 0
Released on day5.
On Sept 30 my niece who tried to be the donor have my brother a break from caretaker for me. That night I passed out will staying at GOL house. Casey called 911,, went to st Mary's hospital have a hemorrhagic bleed in the body. Hyplexia anemia. And alot of other hyplexia stuff. Under went massive transfusions.
30 pts of blood , platelet, and fluids. Was not good had several teams work g on a way to stop the bleed. I am very fortunate to have had Casey with me , she helped with 911 and was able to give them a detail info to the paramedics and Drs at the ER. Until my brother showed up. 5 days in ICU then 10 days recovery. Went backwards. I am doing good now. I have been reading the connect but I guess I haven't responded to it. Sorry
I was diagnosed with prehillar Chalangiocarsanoma.
That's why the transplant. I am blessed.
Jerry Drennan

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@jerrydrennan Oh my goodness, Jerry, you sure had a tough time there. That sure is a lot of transfusions. Thank goodness you had someone there with you. I am so happy for you that you are doing well now, and yes, you are blessed.

I just googled Perihilar cholangiocarcinoma and you are indeed very fortunate to have been diagnosed when you were and to have had a transplant. Those of us who have been through transplants realize how lucky we are to be alive in a time when this is possible. I thank God every day that I am still here.
JK

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@jerrydrennan

@contentandwell
@rosemarya
I had my transplant Sept. 19 officially. The transplant went great. I was walking day 0
Released on day5.
On Sept 30 my niece who tried to be the donor have my brother a break from caretaker for me. That night I passed out will staying at GOL house. Casey called 911,, went to st Mary's hospital have a hemorrhagic bleed in the body. Hyplexia anemia. And alot of other hyplexia stuff. Under went massive transfusions.
30 pts of blood , platelet, and fluids. Was not good had several teams work g on a way to stop the bleed. I am very fortunate to have had Casey with me , she helped with 911 and was able to give them a detail info to the paramedics and Drs at the ER. Until my brother showed up. 5 days in ICU then 10 days recovery. Went backwards. I am doing good now. I have been reading the connect but I guess I haven't responded to it. Sorry
I was diagnosed with prehillar Chalangiocarsanoma.
That's why the transplant. I am blessed.
Jerry Drennan

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Jerry, You have really been on a wild journey. I had no idea that all this was happening to you. I am relieved to hear that you are doing good now. I send my thoughts and prayers that your recovery continues on a positive path.

What a blessing to have such a niece! Carrie is a hero and a role model for all of us.
It is remarkable that you were still at the GOL and so near to Mayo St Mary's ER. It sounds as if that is another part of your miracle outcome.

Jerry, with all of that behind you, I fully expect you to have strong expectation for a Happy and Healthy New Year. Take it one day at a time, and keep on getting stronger. I am happy that you are following the conversations here on Connect, and as you get stronger, I look forward to hearing from you about your new life. I have a lot of questions that I would like to ask you, so don't stay away too long!

Are you at home now?

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@mnemeth318

@mathewsw
In answer to your question I did some research and found that according to UNOS there have been NO LDLTs in FLA since 2012 (this includes Mayo) and for PHX MAYO they are continuing to perform them sporadically over the past few years. And finally, ROC MAYO did 15 in 2018 so they are still going strong.

I had my LDLT @ Mayo PHX back in 2013. My wife was the donor and the liver lasted over 5 years until Biliary complications arose and it necessitated a need for us to relocate to JAX where I, only a few weeks ago, received a cadaver liver.

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@mnemeth318, I want to drop in for a short visit and say that I hope that you are experiencing a satisfactory recovery. I hope that you will have the energy to welcome the New Year!
Have you been released from the hospital?

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@stella25

Hello Rosemary. I'm fairly new to Connect. I want to thank you for being a mentor for transplants. Your insight and willingness to share is extremely beneficial to those of us heading to transplant. I appreciate you providing the pages for Living Donor and Recipient Toolkits. Great information. Again, thank you for your time and expertise. I'm sure I will be coming to you quite often in the very near future.

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Stella, I just noticed that you are following the Connect PSC Pages. Does your son have PSC? That is why I needed a transplant. I was diagnosed with PSC and have received a successful transplant and I am doing well. I will honor 10 year anniversary in April.
If you want to talk PSC, I am here, anytime.

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@rosemarya

Stella, I just noticed that you are following the Connect PSC Pages. Does your son have PSC? That is why I needed a transplant. I was diagnosed with PSC and have received a successful transplant and I am doing well. I will honor 10 year anniversary in April.
If you want to talk PSC, I am here, anytime.

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Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago. Took close to two years to get a proper diagnosis. Based on what we now know about the disease we are guessing he probably has had it at least 6 years possibly longer. He's 34 now and is stage 4 cirrhosis. The past month or so has warranted a couple of trips to the ER. A week or so ago his doctor suggested he is getting close to meeting with the transplant evaluation team. It is wonderful to hear success transplant stories such as yours! 10 years!! Wow, simply amazing:-) I will definitely keep the conversation going with you. Thank you again. Your generous offer is greatly appreciated by myself & my family.

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@rosemarya

@mnemeth318, I want to drop in for a short visit and say that I hope that you are experiencing a satisfactory recovery. I hope that you will have the energy to welcome the New Year!
Have you been released from the hospital?

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Thanks @rosemarya for your note and concern. As of today, I am 27 days removed from surgery and 19 days removed from my hospital stay. 🙂 Yes, since about day 2 I have been exhibiting the energy to act more independently, however, in that zeal I have found myself at times, straining what little original muscle I do have around the right side of my abdomen. (The result of two liver transplants in 6 years.) So in the end I would say I have 90% good days but then get laid up for the other 10% for having done too much with the 90%.

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@stella25

Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago. Took close to two years to get a proper diagnosis. Based on what we now know about the disease we are guessing he probably has had it at least 6 years possibly longer. He's 34 now and is stage 4 cirrhosis. The past month or so has warranted a couple of trips to the ER. A week or so ago his doctor suggested he is getting close to meeting with the transplant evaluation team. It is wonderful to hear success transplant stories such as yours! 10 years!! Wow, simply amazing:-) I will definitely keep the conversation going with you. Thank you again. Your generous offer is greatly appreciated by myself & my family.

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@stella25 most of us who have had cirrhosis and liver transplants have had other causes, but we too can help if you have questions not directly related to PSC, Rosemary knows so much about all of that, and is the expert on PSC. She was fortunate in not having HE episodes, whereas I did have them.

When I was finally diagnosed with cirrhosis after almost a year and a half of not knowing what my problem was, I went to a hepatologist. She said I probably had cirrhosis for 10 years, cirrhosis takes a long time before presenting itself. I had some vague symptoms that were not attributed to cirrhosis at all. So, it’s not unusual that your son had it for a long time also. I then realized that my shaky hands and diabetes started just around the time that the hepatologist indicated.

I had my transplant in September 2016 and have been doing well ever since. I hope your son becomes a candidate soon and doesn’t have to wait too long for a transplant.
JK

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@mnemeth318

Thanks @rosemarya for your note and concern. As of today, I am 27 days removed from surgery and 19 days removed from my hospital stay. 🙂 Yes, since about day 2 I have been exhibiting the energy to act more independently, however, in that zeal I have found myself at times, straining what little original muscle I do have around the right side of my abdomen. (The result of two liver transplants in 6 years.) So in the end I would say I have 90% good days but then get laid up for the other 10% for having done too much with the 90%.

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@mnemeth318 it sounds as if you are doing great! You are like me though, when I feel good I tend to overdo and pay for that the next day. Try to keep a rein on that, and I hope you feel better every day.
JK

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@rosemarya

Jerry, You have really been on a wild journey. I had no idea that all this was happening to you. I am relieved to hear that you are doing good now. I send my thoughts and prayers that your recovery continues on a positive path.

What a blessing to have such a niece! Carrie is a hero and a role model for all of us.
It is remarkable that you were still at the GOL and so near to Mayo St Mary's ER. It sounds as if that is another part of your miracle outcome.

Jerry, with all of that behind you, I fully expect you to have strong expectation for a Happy and Healthy New Year. Take it one day at a time, and keep on getting stronger. I am happy that you are following the conversations here on Connect, and as you get stronger, I look forward to hearing from you about your new life. I have a lot of questions that I would like to ask you, so don't stay away too long!

Are you at home now?

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@rosemarya
Yes I am blessed to have been at the GOL and that Casey was with me . I struggle with some side effects from the transplant and the hyplexia anemia. Or bleed. But being home is great and not feeling bad from chemo and a failing liver. I am going to follow connect and help where I think I can.
You and @contentandwell are the ones that are an inspiration to others .
Love and prayers
God Bless
Jerry Drennan

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@jerrydrennan

@rosemarya
Yes I am blessed to have been at the GOL and that Casey was with me . I struggle with some side effects from the transplant and the hyplexia anemia. Or bleed. But being home is great and not feeling bad from chemo and a failing liver. I am going to follow connect and help where I think I can.
You and @contentandwell are the ones that are an inspiration to others .
Love and prayers
God Bless
Jerry Drennan

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@jerrydrennan your faith and attitude are an inspiration to me. I'm so glad we met!
Blessings,
JoDee

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@stella25

Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago. Took close to two years to get a proper diagnosis. Based on what we now know about the disease we are guessing he probably has had it at least 6 years possibly longer. He's 34 now and is stage 4 cirrhosis. The past month or so has warranted a couple of trips to the ER. A week or so ago his doctor suggested he is getting close to meeting with the transplant evaluation team. It is wonderful to hear success transplant stories such as yours! 10 years!! Wow, simply amazing:-) I will definitely keep the conversation going with you. Thank you again. Your generous offer is greatly appreciated by myself & my family.

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Stella, It also took between 1 – 2 years for me to have a PSC diagnosis. I was just over 50 then.
I was 60 when I received my transplant from an anonymous deceased donor. And the time in between was a mix of ups and downs. I was also told by my GI when it was time to go to the liver transplant team for evaluation, and I was both comforted and frightened by that.
I know that we are a rare group, and that is how I found Mayo Connect. I wanted to meet someone else who had a transplant due to PSC.

Liked by stella25

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@jerrydrennan

@rosemarya
Yes I am blessed to have been at the GOL and that Casey was with me . I struggle with some side effects from the transplant and the hyplexia anemia. Or bleed. But being home is great and not feeling bad from chemo and a failing liver. I am going to follow connect and help where I think I can.
You and @contentandwell are the ones that are an inspiration to others .
Love and prayers
God Bless
Jerry Drennan

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Jerry, Now that you have received your transplant, I want to share this with you.
Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/

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