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!

@skipmarsliver

I came to Rochester after my son urged me to. There a week, I learned more about cirrhosis of the liver, plus had more procedures than I had in two months in Western North Carolina. My gastroenterologist (East Tennessee) was content to have me lose water weight via diuretics, and monitoring with periodic blood panels. He told me no transplant center would even talk to me if I had consumed alcohol within the year (I quit entirely in early July). He didn’t give me a MELD score and downplayed knowing the cause of my liver disease (what will that change? he asked). That week at Mayo was a breath of fresh air for me, as well as the nod to take responsibility of my situation and to be proactive.

Although I live too far from any of the Mayo locations, but Duke Liver Transplant Center is 4 hours away by car. I’ve been invited to go through their 3-day screening and education for program mid-November.

So thankful my son insisted we go to Rochester. Reminds me that even doctors aren’t always right.

Push on!

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@skipmarsliver I am so glad that you went to a major medical center, Mayo, and that you will now be a patient at another one. I too learned how important it is to do that and went to Mass General where I eventually had a liver transplant.
I am looking forward to hearing how things work at Duke, and what they determine your MELD to be.
When I first started at Mass General mine was 11 but it quickly went up to 18 and then in about another 9 months or so it was 28, the MELD at which I received a transplant in September 2017.
It really such a relief to be a patient at a medical center where they are knowledgeable about your condition.
JK

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@contentandwell

@skipmarsliver I am so glad that you went to a major medical center, Mayo, and that you will now be a patient at another one. I too learned how important it is to do that and went to Mass General where I eventually had a liver transplant.
I am looking forward to hearing how things work at Duke, and what they determine your MELD to be.
When I first started at Mass General mine was 11 but it quickly went up to 18 and then in about another 9 months or so it was 28, the MELD at which I received a transplant in September 2017.
It really such a relief to be a patient at a medical center where they are knowledgeable about your condition.
JK

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Sorry to change the subject….has anyone heard the term “activation list”?
A co-worker of my wife indicated recently being placed on the activation list however this person has been on the waiting list for some time.

Just curious what the difference is if any. Thanks.

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@rodney9999

Sorry to change the subject….has anyone heard the term “activation list”?
A co-worker of my wife indicated recently being placed on the activation list however this person has been on the waiting list for some time.

Just curious what the difference is if any. Thanks.

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@rodney9999 I think that just means that the patient is an active candidate for a transplant. Before your MELD reaches a certain number you may be waiting, but not “actively”. I could be wrong but I can’t think of any other possible explanation.
JK

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I've been on the list over a year….

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@rodney9999

Sorry to change the subject….has anyone heard the term “activation list”?
A co-worker of my wife indicated recently being placed on the activation list however this person has been on the waiting list for some time.

Just curious what the difference is if any. Thanks.

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During my pre-transplant period, while on the waiting list for a liver due to PSC, I was 'temporarily inactivated' when my blood lab results indicated possible cholangiocarcinoma. This required me to be inactivated until a biopsy could be performed and resulted in an "all clear" diagnosis. I would then be re-activated on the transplant waiting list.

@rodney9999, @contentandwell
Here is the definition of Active Candidate from the Organ Procurement and Transplantation Network>Glossary https://optn.transplant.hrsa.gov/resources/glossary/
"A transplant candidate eligible to be considered for organ offers at a given point in time. Some transplant candidates are temporarily classified as “inactive” by their transplant center because they are medically unsuitable for transplantation or need to complete other eligibility requirements."

Rodney9999, this is an excellent question and this is the perfect place to post it. I hope the definition is helpful to you. There is probably no way of knowing what might lead to someone being inactivated, and for how long. But it does happen, and when a person is reactivated, they return to their 'place' as far as ranking by time already spent on the list. This was all new to me when it happened, I guess you can say that I learned by experience.
It is good to hear your voice! How are you getting along?

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@racing212

I've been on the list over a year….

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Hi @racing212 So how are you doing a year out? What is your MELD now? I was on the list for almost a year and a half. I expected to be waiting at least two more months but a transplant came through earlier than anticipated. I was at MELD 28 at that point but in another couple of weeks I am sure that would have increased to 30 or 31.
Are you feeling well? I believe you had mentioned being on lactulose and xifaxan. Are your HE episodes fairly well controlled now? Mine were pretty well controlled when I was taking xifaxan but as my conditioned worsened they did resume, but not as frequently. They did add lactulose back in to help even more.
I went back and checked your prior posts and see you go to Mayo in Rochester. Is that far from you? I believe if it is that when you are getting very close they will have you staying there so you will be there when a compatible liver becomes available. My transplant was at Mass General in Boston so that's only about 55 miles down the highway and they were able to just call me when they had a liver.
Try to not get discouraged, it will happen. We will all rejoice with you when it does. Please keep us up to date on how you are doing.
JK

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@contentandwell

Hi @racing212 So how are you doing a year out? What is your MELD now? I was on the list for almost a year and a half. I expected to be waiting at least two more months but a transplant came through earlier than anticipated. I was at MELD 28 at that point but in another couple of weeks I am sure that would have increased to 30 or 31.
Are you feeling well? I believe you had mentioned being on lactulose and xifaxan. Are your HE episodes fairly well controlled now? Mine were pretty well controlled when I was taking xifaxan but as my conditioned worsened they did resume, but not as frequently. They did add lactulose back in to help even more.
I went back and checked your prior posts and see you go to Mayo in Rochester. Is that far from you? I believe if it is that when you are getting very close they will have you staying there so you will be there when a compatible liver becomes available. My transplant was at Mass General in Boston so that's only about 55 miles down the highway and they were able to just call me when they had a liver.
Try to not get discouraged, it will happen. We will all rejoice with you when it does. Please keep us up to date on how you are doing.
JK

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I was in hospital in august . my amonia levels went up and i passed out. My meld is 17. I do go to Rochester and its about 3.5 hours away

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@racing212

I was in hospital in august . my amonia levels went up and i passed out. My meld is 17. I do go to Rochester and its about 3.5 hours away

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@racing212 Cirrhosis really does affect each of us differently. It sounds as if your HE episodes have been fairly severe, yet your MELD is still rather low. The worst HE episodes I had did not bring me close to passing out, although I do remember being almost catatonic with one. With most, I was just very difficult at the worst, and just confused with milder ones — with those a long nap cured them.

The more I have learned the more I think that diet is definitely an influence on HE, certain foods do create more ammonia. Those are generally protein foods, I think that red meat is probably the worst of those. I kept my meat/fish at dinner down to 4 oz which was different for me because we had generally had larger portions of meat. I was told to not give up protein though so I did continue to have it. Knowing what I know now I think I would keep a food diary of what I eat so when I had an HE episode I could look back and see what may have brought it on.
I have heard of some people giving up meat-based protein entirely but I would not and could not do that myself. My hepatologist (at that time) did not advocate that and I do not believe they do at Mayo either but I am not sure about Mayo.
JK

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@racing212

I was in hospital in august . my amonia levels went up and i passed out. My meld is 17. I do go to Rochester and its about 3.5 hours away

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@racing212, I also live at a distance from Mayo. However, my local docs do coordinate with Mayo, and that gives me confidence that I get the best of care. I hope that that is the way it is with youur docs. I am sorry to hear about your hospitalization. Pre transplant. my hospital and ER visits were quite frequent, and I never got used to them, however I did (unfortunately) become well known to the staff there.
I sincerely hope that you will soon be match for an available organ. It is a matter of time, and speaking from my experience, the waiting can feel intolerable.
I want to emphasize the importance of eating healthy and remaining active prior to transplant. Your body will be better prepared for surgery and recovery will be easier. Are you able to eat and get some exercise?

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@rosemarya

@racing212, I also live at a distance from Mayo. However, my local docs do coordinate with Mayo, and that gives me confidence that I get the best of care. I hope that that is the way it is with youur docs. I am sorry to hear about your hospitalization. Pre transplant. my hospital and ER visits were quite frequent, and I never got used to them, however I did (unfortunately) become well known to the staff there.
I sincerely hope that you will soon be match for an available organ. It is a matter of time, and speaking from my experience, the waiting can feel intolerable.
I want to emphasize the importance of eating healthy and remaining active prior to transplant. Your body will be better prepared for surgery and recovery will be easier. Are you able to eat and get some exercise?

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I'm known to the staff here to.. I still am able work part time i go to a couple stores to walk

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@contentandwell

@racing212 Cirrhosis really does affect each of us differently. It sounds as if your HE episodes have been fairly severe, yet your MELD is still rather low. The worst HE episodes I had did not bring me close to passing out, although I do remember being almost catatonic with one. With most, I was just very difficult at the worst, and just confused with milder ones — with those a long nap cured them.

The more I have learned the more I think that diet is definitely an influence on HE, certain foods do create more ammonia. Those are generally protein foods, I think that red meat is probably the worst of those. I kept my meat/fish at dinner down to 4 oz which was different for me because we had generally had larger portions of meat. I was told to not give up protein though so I did continue to have it. Knowing what I know now I think I would keep a food diary of what I eat so when I had an HE episode I could look back and see what may have brought it on.
I have heard of some people giving up meat-based protein entirely but I would not and could not do that myself. My hepatologist (at that time) did not advocate that and I do not believe they do at Mayo either but I am not sure about Mayo.
JK

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I've had episode of waking up 3 to 4 days later in a different hospital. That happened 3 times. The Dr's at one. Hospital told a friend that he didn't think i would make it to April. That was last October

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@rosemarya

During my pre-transplant period, while on the waiting list for a liver due to PSC, I was 'temporarily inactivated' when my blood lab results indicated possible cholangiocarcinoma. This required me to be inactivated until a biopsy could be performed and resulted in an "all clear" diagnosis. I would then be re-activated on the transplant waiting list.

@rodney9999, @contentandwell
Here is the definition of Active Candidate from the Organ Procurement and Transplantation Network>Glossary https://optn.transplant.hrsa.gov/resources/glossary/
"A transplant candidate eligible to be considered for organ offers at a given point in time. Some transplant candidates are temporarily classified as “inactive” by their transplant center because they are medically unsuitable for transplantation or need to complete other eligibility requirements."

Rodney9999, this is an excellent question and this is the perfect place to post it. I hope the definition is helpful to you. There is probably no way of knowing what might lead to someone being inactivated, and for how long. But it does happen, and when a person is reactivated, they return to their 'place' as far as ranking by time already spent on the list. This was all new to me when it happened, I guess you can say that I learned by experience.
It is good to hear your voice! How are you getting along?

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Hi Rosemary,

Thank you so much for asking. I am doing well….almost 7 months post transplant without incident. Thanks again for all the useful info you provide on the website…much appreciated.

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@racing212

I've had episode of waking up 3 to 4 days later in a different hospital. That happened 3 times. The Dr's at one. Hospital told a friend that he didn't think i would make it to April. That was last October

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@racing212 when you say last October I presume you are referring to October 2018: not this just past October. If that doctor is not at a hospital that does not do transplants and does not have a hepatology department, he/she is probably not that familiar with your condition.
I live in NH and there are only two hepatologists in the state, both I believe at Dartmouth. There is no hospital in the state that does liver transplants. I was at a Manchester hospital for HE episodes and they really were not that knowledgeable. If I knew then what I know now I would never have gone there but the times that I did my husband just wanted to get me care quickly. One time with a more serious Pre-transplant issue the hospital in Manchester did get an ambulance to bring me to Mass General.
JK

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@contentandwell

@racing212 when you say last October I presume you are referring to October 2018: not this just past October. If that doctor is not at a hospital that does not do transplants and does not have a hepatology department, he/she is probably not that familiar with your condition.
I live in NH and there are only two hepatologists in the state, both I believe at Dartmouth. There is no hospital in the state that does liver transplants. I was at a Manchester hospital for HE episodes and they really were not that knowledgeable. If I knew then what I know now I would never have gone there but the times that I did my husband just wanted to get me care quickly. One time with a more serious Pre-transplant issue the hospital in Manchester did get an ambulance to bring me to Mass General.
JK

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The dr goes to the hospital i was sent to….he's from Rochester mn.i go there to see him. They email him my information if and when i go to hospital

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@racing212

I've had episode of waking up 3 to 4 days later in a different hospital. That happened 3 times. The Dr's at one. Hospital told a friend that he didn't think i would make it to April. That was last October

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@racing212 I also woke up in a different hospital a couple if times. Each had hepatologists but the hospital I ending up going to had the transplant unit/floor. Very disorientating, especially after HE episodes.

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