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!

@rosemarya

Hi, @brianna. Welcome to Connect. I am happy that you have joined us. This is a great question, and I will share my experience with ascites, as long as you understand that everyone of us is different in how our body acts with liver disease.
Have you had a paracenthesis? It is a procedure that is administered to drain the excess fluid that collects. I needed one around every 10 days and a good volume of fluid was drained each time, and my "pregnant" body was normal again for a couple days.
As for walking, I have always been a walker and a casual hiker. I could barely walk across the room pretransplant, because it left me breathless. After transplant, I was able to slowly begin walking to build up the wasted muscles and my endurance. I transplanted in the month of April, 2009 and in October 2009, I was given the approval by my transplant team to hike again. My husband and I went on some hikes in the Great Smokey Mountains.
Brianna, are currently on the transplant list and waiting of an organ? How can I help you as you move forward?

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Thank you for sharing your experience. I am currently in the process of evaluation. I have not been added to the list yet. I'm really not feeling well and I'm just scared. I would love advice about how you kept going when things got so tough.

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Your strength is inspiring. I'm glad things went so well for you. Thanks for the information about numbness. I had not heard about that yet.

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@brianna

Thank you for sharing your experience. I am currently in the process of evaluation. I have not been added to the list yet. I'm really not feeling well and I'm just scared. I would love advice about how you kept going when things got so tough.

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@brianna, I understand what you are going through. Where are you being evaluated? Because right now there is another member who is undergoing evaluation for a liver transplant in Jacksonville.
I was diagnosed with PSC (Primary Sclerosing Cholangitis) that made me nauseous, jaundices, fatigued, with ascites,..and eventually kidney failure. I transplanted both a liver and a kidney in 2009 when I was 60. Immediately adfter I came out of surgery, I felt like a new person. I could breathe, taste food, wanted to eat, rgained strength and have been blessed with good health ever since.
My secret to surviving was one day at a time, and a good team of doctors who directed me along the way (and I listened and did exactly as they said).
This might be too much information, however I was asked to write about my journey –
Pages >Transplant >Staying Positive While Waiting for a Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed-post/staying-positive-while-waiting-for-a-transplant/

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@rosemarya

@brianna, I understand what you are going through. Where are you being evaluated? Because right now there is another member who is undergoing evaluation for a liver transplant in Jacksonville.
I was diagnosed with PSC (Primary Sclerosing Cholangitis) that made me nauseous, jaundices, fatigued, with ascites,..and eventually kidney failure. I transplanted both a liver and a kidney in 2009 when I was 60. Immediately adfter I came out of surgery, I felt like a new person. I could breathe, taste food, wanted to eat, rgained strength and have been blessed with good health ever since.
My secret to surviving was one day at a time, and a good team of doctors who directed me along the way (and I listened and did exactly as they said).
This might be too much information, however I was asked to write about my journey –
Pages >Transplant >Staying Positive While Waiting for a Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed-post/staying-positive-while-waiting-for-a-transplant/

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Hi Brianna I’m a 57-year-old male I was diagnosed back in 2010 up in Boston Massachusetts and have been on the waiting list since then I was told I should try the mayo clinic in Jacksonville so I am down here for the month I’m glad that your surgery went well at your age of 60 they told me that the cut off age was 55 so knowing that you were 60 and had it done successfully I am glad to see the end results thank you for sharing your story with me it’s just nerve-racking to be waiting and waiting and waiting and not find a donor I was doing the deceased donor and also a live donor some of my family and friends couldn’t do it because of their BMI and because some of them had too much fatty around their liver so they went on special diets to get approved on the list and then they were denied because they incurred too much scar tissue So that took them off the list automatically they can no longer be a donor for a liver I just want to put this behind me so I can go on with my life I have been through a lot and still am going through a lot I haven’t had any major issues nor has my skin or eyes turned joined us I pray every day that this gets resolved again thank you for sharing your story and God bless

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@manuelhsilva

Hi Brianna I’m a 57-year-old male I was diagnosed back in 2010 up in Boston Massachusetts and have been on the waiting list since then I was told I should try the mayo clinic in Jacksonville so I am down here for the month I’m glad that your surgery went well at your age of 60 they told me that the cut off age was 55 so knowing that you were 60 and had it done successfully I am glad to see the end results thank you for sharing your story with me it’s just nerve-racking to be waiting and waiting and waiting and not find a donor I was doing the deceased donor and also a live donor some of my family and friends couldn’t do it because of their BMI and because some of them had too much fatty around their liver so they went on special diets to get approved on the list and then they were denied because they incurred too much scar tissue So that took them off the list automatically they can no longer be a donor for a liver I just want to put this behind me so I can go on with my life I have been through a lot and still am going through a lot I haven’t had any major issues nor has my skin or eyes turned joined us I pray every day that this gets resolved again thank you for sharing your story and God bless

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@manuelhsilva, I think that you meant this reply for me, @rosemarya. That's ok, it can get confusing.
You mentioned Boston and Mayo JAX, are you double listed?
How long have you been on the transplant list? You say no major issues, that is good to hear.
What questions do you have about transplant? I will try to help you.

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@tjgisewhite

@brianna yes that was very quick. I went home after just 4 days. I was the poster child for liver transplant patients at Mayo Jacksonville :). What I did not expect during my recovery was being numb in my abdomen where my new liver is. I will be numb there for the rest of my life.

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I expected the same after my June 2019 Liver and Kidney transplant. After 6 months my feeling started to return and now after 9 months, it's over 80% back .I'm a 69 year old male – so your healing process may be much faster. My Liver has never had any problems – my kidney has minor problems. I lost 2 years fighting through this and it was worth the journey.

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@benlam11

After the misdiagnosis, I contacted the MAYO myself – as I lost trust locally. They are just the most caring and, knowledge people I've ever met. With all my records sent there – I was diagnosed in One Day. It did take 9 months to complete all the testing. I've been in a HE coma twice (initially the TV was talking to me, then I entered a FOG that I could not see trough, with things talking to me. Now my Ammonia Levels are Great. Before I was taking Xifaxan and Lactulose, Las Vegas Doctors were pushing me to go on dialysis (I kept procrastinating) and eventually after speaking with an amazing Dr. at the Mayo, he said to skip it – for the worst that would happen is that they would tap my neck. Get on the waiting list quickly and also look at the time to transplant at each center. There are some huge swings. Best Wishes. My Meld score at some point was in the upper 20's, and when they called, I was 5 minutes away.

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@benlam11 Your story is a bit similar to mine, but I did finally get a diagnosis up here. The first PCP called me on the phone and told me she thought I had Alzheimer’s. I quickly switched PCPs. Due to the HE episodes I was sent to a neurologist because the PCP thought I had a neurological problem. The neurologist was the one who suggested a liver problem, that was a year and four months after my first HE episode. I got an appointment with a hepatologist at Mass General as soon as possible. They were wonderful there, my experience was similar to yours at Mayo – they are #1 and #2 in the country. The hepatologist put me on xifaxan and for a long time I only needed that, no lactulose. I now go to Mass General for everything except my PCP. I would go there for that too but I figure I should have him closer. During the day it can take 2 hours to get to Boston.

@khh as I said above, the PCP thought it was Alzheimer’s. When I finally did get the cirrhosis diagnosis I realized how ridiculous it was that no one put two and two together before that. I had so many telltale symptoms – declining platelet counts, shaky hands, cramps, and the big red flag, episodes of confusion and irrationality.
Please insist on seeing a doctor. More than likely you will be advised to have any immunizations now, pre-transplant, before you are on immunosuppressants. Some are fine after, like pneumonia, but some are not. MGH has not approved the shingles vaccine. It is not a live vaccine but they are concerned because there is a protein in it that increases your immunity.

Hi @brianna Welcome to Connect. I was up and walking by the next day. A nurse would take me for walks and when my husband visited we would circle around the unit. They encouraged me to do so.
I hope all goes well with your evaluation. I found it draining but it has to be done.

@manuelhsilva Welcome to Connect. If you don’t mind sharing, which hospital in Boston were you evaluated at? When I was at MGH they did not have an age restriction, it depended on the health of the candidate. I was two days short of 69 when I had my transplant. At Mass General they did tell me that the Boston region often transplants at a higher MELD due to such high demand and they suggested looking into Florida and Indiana. I’m not sure where in Indiana, nor did they specify where in FL. I did look into Mayo in MN and was considering them because they told me they would probably be able to transplant me at MELD 28 and at that point MGH was saying in the 30s. Thankfully they did come through for me at MELD 28 though. At that point I was going downhill fast and my MELD was about to be increased.

@tjgisewhite Four days, that’s phenomenal! I was in for 6 but my recovery was amazing. By the time I left the hospital I had very little discomfort and my incision had stopped hurting. When I went for my first post-transplant appointment, two weeks after the transplant, they were amazed that I looked so good. I believe that losing weight and exercising before the transplant really helped me to recover faster. I did both of those thinking it would help.
JK

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@tjgisewhite

@brianna yes that was very quick. I went home after just 4 days. I was the poster child for liver transplant patients at Mayo Jacksonville :). What I did not expect during my recovery was being numb in my abdomen where my new liver is. I will be numb there for the rest of my life.

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One advantage of the numbness is that my daily insulin shots can be administered pain free

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My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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@rosemarya

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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I'm doing fairly well. I was in hospital for a week with urinary track infection

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@rosemarya

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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Hi @rosemarya and all! Things are staying stable here. This is doing great so far as past transplant is going. It will be 2 years for him on July 7. I have been furloughed from work so both of us are able to stay home. We order our groceries online and pick them up. We order meals to go once a week and do curbside pickup. Its working for us!

Tim's dementia/Alzheimer's is staying stable since his diagnosis last October. I'm hoping it stays this way for sometime. Fingers crossed and prayers said.

Easter Blessings to all,
JoDee

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@rosemarya

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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Hi. Thank you ! To update, I finally had an ERCP on March 18th. Five stents were placed in the bile ducts and I believe that has made a difference. Initially my whole GI tract was off kilter. I blame it on the increased bile being released. I am now back to baseline "new reality". Good news.

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@rosemarya

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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How sweet of you Rosemary to be thinking of others! My son, with PSC & listed for transplant, is holding his own. Staying positive & strong. He recently transferred his care to another transplant center. It was a bit of a process but it is complete & official as of last week. His wait time will follow him to the new center. We continue our search for a living donor & are extremely excited to be working with his wonderfully amazing new team of care providers. Wishing all a healthy, happy & blessed Easter season. May we all be safe & find peace in our pandemic isolation:-)

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@rosemarya

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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Thank you Rosemary! I'm doing alright…just setting up and going to televisits or in person visits to the specialists the team requested I get established with. Blood sugars are on a roller coaster right now though so we're working on that. With Lactulose, however, toilet paper is essential and I haven't found any online or in stores here in weeks. When it is stocked it sells out within 5-10 minutes

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Good morning Rosemary…I'm a recent liver recipient, Jan 23, 2020, recovering well. I'm 11 weeks out, my clinics have changed to video appointments, which is fine. I've been experiencing fluid on my right side, which I did discuss with my NP. I did a CT scan 3 weeks ago, my labs are great, no concern from my liver team. I'm using warm compresses, and continuing to walk daily as directed. I've been scanning the internet to see if this is common with other transplant patients. Any comments or ideas?? Thanks so much!!

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