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!

@rodney9999

Hi,
I’m new to the discussion and just wanted to join the group. I am 7 weeks post liver transplant and was transplanted with a MELD of 23. Things for me so far are going well. I accepted a high risk liver with the donor being exposed to Hep B/C. Doctors informed me and my wife take whatever we could get and we did!

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@rodney9999 I too welcome you to Connect. Congratulations on being post-transplant. I had a transplant in September, 2016. You were very fortunate to have a transplant at a MELD 23, I presume that was because you agreed to take a high-risk liver. I discovered that some of the reasons that cause them to be considered "high risk" are often not serious, and of course Hep can be cured now after having a transplant. I was never approached about that but if I had been, particularly at the point I was at, I definitely would have considered it also.
I am happy that things are going well for you. Things have been great for me ever since my transplant, other than a few pesky things caused by the immunosuppressants. I can live with those though.
How wonderful that you were able to help another family with their fears also. Like you, I was not yet at the point where my team thought I would get a transplant (MELD 28, which at that time was lower than typical in Boston) but a liver did come through for me at that MELD, which was great because in the month prior things had really gone downhill. My MELD was due to be increased soon.
JK

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@contentandwell

@rodney9999 I too welcome you to Connect. Congratulations on being post-transplant. I had a transplant in September, 2016. You were very fortunate to have a transplant at a MELD 23, I presume that was because you agreed to take a high-risk liver. I discovered that some of the reasons that cause them to be considered "high risk" are often not serious, and of course Hep can be cured now after having a transplant. I was never approached about that but if I had been, particularly at the point I was at, I definitely would have considered it also.
I am happy that things are going well for you. Things have been great for me ever since my transplant, other than a few pesky things caused by the immunosuppressants. I can live with those though.
How wonderful that you were able to help another family with their fears also. Like you, I was not yet at the point where my team thought I would get a transplant (MELD 28, which at that time was lower than typical in Boston) but a liver did come through for me at that MELD, which was great because in the month prior things had really gone downhill. My MELD was due to be increased soon.
JK

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Thank you everyone for the nice welcome. My team informed me without acceptance of a higher risk liver, I would need a MELD of around 32. I knew I’d never last that long.

As you indicated, It seems that a liver considered high risk may actually not be serious and is treatable. I know everyone’s situation is different but for me it was the best option.

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@rodney9999

Thank you for moving the posting. I was on the waitlist for 6 months. I realize it is early post transplant however I am feeling well.

I know everyone has a story and mine is a long one; however I just wanted to share a quick story. During a post op follow up appointment with my doctor, he asked myself and my wife to speak with another family regarding accepting high risk Hep B/C livers. This particular family was nervous, just as I was, about signing consent to accept such an organ if one became available. Without any doctors present, this family after talking with us for about 10 min and looking at me, signed consent.

For me, I was very sick however my MELD wasn’t high enough to warrant transplant. I’m realizing now that could have been the best decision of my life.

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@rodney9999 My son with PSC is on the wait list at the University of Utah. Currently they do not transplant high risk livers. If & hopefully when they change their policy our son would accept a hep C liver if one became available. Thank you for sharing this post. I wish you all the best on your journey to complete recovery:-)

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@stella25

@rodney9999 My son with PSC is on the wait list at the University of Utah. Currently they do not transplant high risk livers. If & hopefully when they change their policy our son would accept a hep C liver if one became available. Thank you for sharing this post. I wish you all the best on your journey to complete recovery:-)

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Thank you very much. I wish both you and your son the very best.

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@rodney9999

Thank you everyone for the nice welcome. My team informed me without acceptance of a higher risk liver, I would need a MELD of around 32. I knew I’d never last that long.

As you indicated, It seems that a liver considered high risk may actually not be serious and is treatable. I know everyone’s situation is different but for me it was the best option.

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I really appreciate patients like you who pave the way! When asked if I would accept an organ from the high risk group I said, "yes". Truthfully I would take whatever I could. In the end it wasn't necessary for me to accept from a high risk donor. I'm glad you've shared your story so it is easier on thoes who come after you and are in your same situation. Congrats on a successful outcome and "thanks" for be brave for all of us in the transplant community. ❤

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@rodney9999

Thank you for moving the posting. I was on the waitlist for 6 months. I realize it is early post transplant however I am feeling well.

I know everyone has a story and mine is a long one; however I just wanted to share a quick story. During a post op follow up appointment with my doctor, he asked myself and my wife to speak with another family regarding accepting high risk Hep B/C livers. This particular family was nervous, just as I was, about signing consent to accept such an organ if one became available. Without any doctors present, this family after talking with us for about 10 min and looking at me, signed consent.

For me, I was very sick however my MELD wasn’t high enough to warrant transplant. I’m realizing now that could have been the best decision of my life.

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Hi, @rodney9999. I want to congratulate you on your recent liver transplant! I am happy that things are going well for you. I am 10 years post transplnat and I can remember the emotions as if it were last week!

Wow, that was a real honor for you and your wife to be asked by the doctor to speak with another couple about your experience with your decision to accept an at-risk (is that the correct term?) organ. That will be one of the moments that they will never forget. I look forward to hearing more of your story and your new life here on Connect.
As others have already told you, this is an inspiration. You and your wife are living examples of what is possible.

Do you require any extra medication,treatment, or monitoring due to receiving the HepB/C liver?

Oops, I almost forgot to say, "Welcome" to Connect!

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@rosemarya

Hi, @rodney9999. I want to congratulate you on your recent liver transplant! I am happy that things are going well for you. I am 10 years post transplnat and I can remember the emotions as if it were last week!

Wow, that was a real honor for you and your wife to be asked by the doctor to speak with another couple about your experience with your decision to accept an at-risk (is that the correct term?) organ. That will be one of the moments that they will never forget. I look forward to hearing more of your story and your new life here on Connect.
As others have already told you, this is an inspiration. You and your wife are living examples of what is possible.

Do you require any extra medication,treatment, or monitoring due to receiving the HepB/C liver?

Oops, I almost forgot to say, "Welcome" to Connect!

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Hi,

Regarding your question, I am taking viread.

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@rosemarya

Hi, @rodney9999. I want to congratulate you on your recent liver transplant! I am happy that things are going well for you. I am 10 years post transplnat and I can remember the emotions as if it were last week!

Wow, that was a real honor for you and your wife to be asked by the doctor to speak with another couple about your experience with your decision to accept an at-risk (is that the correct term?) organ. That will be one of the moments that they will never forget. I look forward to hearing more of your story and your new life here on Connect.
As others have already told you, this is an inspiration. You and your wife are living examples of what is possible.

Do you require any extra medication,treatment, or monitoring due to receiving the HepB/C liver?

Oops, I almost forgot to say, "Welcome" to Connect!

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I forgot to say as well…thank you for the kind words.

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@rosemarya

Hi, @rodney9999. I want to congratulate you on your recent liver transplant! I am happy that things are going well for you. I am 10 years post transplnat and I can remember the emotions as if it were last week!

Wow, that was a real honor for you and your wife to be asked by the doctor to speak with another couple about your experience with your decision to accept an at-risk (is that the correct term?) organ. That will be one of the moments that they will never forget. I look forward to hearing more of your story and your new life here on Connect.
As others have already told you, this is an inspiration. You and your wife are living examples of what is possible.

Do you require any extra medication,treatment, or monitoring due to receiving the HepB/C liver?

Oops, I almost forgot to say, "Welcome" to Connect!

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Sorry…forgot to mention..valcyte for Hep C along with viread.

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@rodney9999, Here is some information I want to share with you and any organ recipient, especially the newer ones. I think that as a new recipient, you will find some useful information as you adjust to your new life. I invite you to join the conversations.

Top Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/

Transplant Medications: Everything You Need to Know
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-medications-everything-you-need-to-know/

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A topic for your support group could include a donor family member tell their story of how their loved one saved lives. We have had speakers talk to the group about dermatology, anxiety, depression, medication side effects, evolution of transplant, stages and types of rejection, insurance and medication claims. there is a lot to talk about!

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@newlifesociety

A topic for your support group could include a donor family member tell their story of how their loved one saved lives. We have had speakers talk to the group about dermatology, anxiety, depression, medication side effects, evolution of transplant, stages and types of rejection, insurance and medication claims. there is a lot to talk about!

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@newlifesociety Great suggestion. For those of us post-transplant patients it would be so reassuring to hear that from the family of our donors, but if not from them specifically, from at least the family of a person whose death did save lives.
I know a great about my donor and I grieve her daily.
JK

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Weight gain after liver transplant

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@christinelouise

Weight gain after liver transplant

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Hi, @christinelouise It's nice to welcome another post-liver-transplant patient. When was your transplant? If it was recent, and if you are on a high dose of prednisone, that is probably causing the weight gain. My transplant was in September 2016, at Mass General Hospital. I was on a higher dose of prednisone early after my transplant but I am now on a very low dose and I cannot blame my struggle with weight on that. I intentionally lost a lot of weight prior to transplant so I am trying to keep my weight down now.

Other than weight gain, how are you feeling? I hope well. It was such a wonderful feeling for the pre-transplant struggles to be history. I was on the dreaded lactulose for HE prior to transplant and hated it. When I was still in the hospital and had some pain my husband would console me with proclaiming "NO MORE LACTULOSE"! I was pretty fortunate through most of my pre-transplant days and other than HE episodes I felt well most of the time. The last six weeks were pretty horrible though so it was a tremendous relief to get that call.
JK

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@christinelouise

Weight gain after liver transplant

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@christinelouise, How long ago did you (or a loved one) receive a transplant? Are you concerned about gaining or losing weight?

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