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

FATIGUE –
Fatigue is one of the symptoms that I experienced, even early in my diagnosis with liver disease. In the beginning, I would sometimes come home from my day as a teacher, and sink into the couch until bedtime. As my disease progressed, my fatigue became overwhelming. I retired early. The good news is that as soon as I woke up from my transplant surgery, I felt as if someone had flipped a switch to ON and the fatigue was gone.
Fatigue is one of the signs and symptoms of cirrhosis that I shared in my reply 2 days ago. (https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487)

Here is the definition of fatigue:
"Nearly everyone is overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy.
Unrelenting exhaustion, on the other hand, lasts longer, is more profound and isn't relieved by rest. It's a nearly constant state of weariness that develops over time and reduces your energy, motivation and concentration. Fatigue at this level impacts your emotional and psychological well-being, too." https://www.mayoclinic.org/symptoms/fatigue/basics/definition/sym-20050894

@racing212, You must have a great group of co-workers! .

Who else has something to share about fatigue while waiting for a liver transplant? How did you manage your daily living?

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I do. They let me take breaks when i want and sometimes i go in the bosses office and play cribbage while i rest…. I leave if i get to tired and nap at times in the lunch room

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@gaylea1

My HE episodes included confusion, lack of awareness (time, place, situation) dizziness (including falling or fainting), irritability, and fatigue. Combined they made me one hot mess lol…When I had my most severe HE episodes I also lost consciencesness. (sp?).

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Did you have any warning that this episode would happen? What first
happened and how did you get to the hospital?

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Regarding fatigue prior to transplant….I got to the point where I got to the kitchen to do household chores and needed a nap afterwards. I was still able to get to the grocery store but would only walk through the produce isle since walking around the entire store was a challenge due to terrible cramping.

Post liver transplant my fatigue and leg pain vanished. The other day I went for a 5 mile walk and wasn’t even tired. I still cannot believe it and am just very grateful to all the amazing doctors out there.

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@rosemarya

FATIGUE –
Fatigue is one of the symptoms that I experienced, even early in my diagnosis with liver disease. In the beginning, I would sometimes come home from my day as a teacher, and sink into the couch until bedtime. As my disease progressed, my fatigue became overwhelming. I retired early. The good news is that as soon as I woke up from my transplant surgery, I felt as if someone had flipped a switch to ON and the fatigue was gone.
Fatigue is one of the signs and symptoms of cirrhosis that I shared in my reply 2 days ago. (https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487)

Here is the definition of fatigue:
"Nearly everyone is overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy.
Unrelenting exhaustion, on the other hand, lasts longer, is more profound and isn't relieved by rest. It's a nearly constant state of weariness that develops over time and reduces your energy, motivation and concentration. Fatigue at this level impacts your emotional and psychological well-being, too." https://www.mayoclinic.org/symptoms/fatigue/basics/definition/sym-20050894

@racing212, You must have a great group of co-workers! .

Who else has something to share about fatigue while waiting for a liver transplant? How did you manage your daily living?

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Good article, @rosemarya Thanks for the link. I do have fatigue pretty much always. I attribute it to inadequate sleep since I get up so many times during the night. My husband thinks it's too much exercise but I think I am more tired when I don't get exercise. I mentioned to my PCP not long ago that I was tired all the time and frequently took a nap in the afternoon. His response was "what's wrong with that?".
Prior to transplant I definitely needed naps. At one point it was so bad I would have to stop and take a break on my way up the stairs and then I discovered that was due to my hemoglobin and hematocrit counts being extremely low, and I had gotten somewhat anemic. I know I was extremely tired initially following transplant too. I think, for me anyway, that anytime my body is recuperating or fighting something off, I do get extremely tired. My recent fracture left me tired a lot.
I went to my club this morning and did about an hour and 15 minutes in the water and right now I am fighting off the desire to go upstairs and take a nap.

@rowdyramsey Johns Hopkins is right up there with Mayo and Mass General in being well known. I believe it, along with those two and Cleveland Clinic, is one of the top four hospitals in the country. Have you gone there? If you are not satisfied with your care at U Maryland I would definitely advise you to go there for a consult. Your problems are somewhat unique and as non-medical people, we really cannot advise you beyond that suggestion to get another opinion. I hope that when you have your appointment on the 26th it will be fruitful.
JK

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@contentandwell

Good article, @rosemarya Thanks for the link. I do have fatigue pretty much always. I attribute it to inadequate sleep since I get up so many times during the night. My husband thinks it's too much exercise but I think I am more tired when I don't get exercise. I mentioned to my PCP not long ago that I was tired all the time and frequently took a nap in the afternoon. His response was "what's wrong with that?".
Prior to transplant I definitely needed naps. At one point it was so bad I would have to stop and take a break on my way up the stairs and then I discovered that was due to my hemoglobin and hematocrit counts being extremely low, and I had gotten somewhat anemic. I know I was extremely tired initially following transplant too. I think, for me anyway, that anytime my body is recuperating or fighting something off, I do get extremely tired. My recent fracture left me tired a lot.
I went to my club this morning and did about an hour and 15 minutes in the water and right now I am fighting off the desire to go upstairs and take a nap.

@rowdyramsey Johns Hopkins is right up there with Mayo and Mass General in being well known. I believe it, along with those two and Cleveland Clinic, is one of the top four hospitals in the country. Have you gone there? If you are not satisfied with your care at U Maryland I would definitely advise you to go there for a consult. Your problems are somewhat unique and as non-medical people, we really cannot advise you beyond that suggestion to get another opinion. I hope that when you have your appointment on the 26th it will be fruitful.
JK

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I have not tried Hopkins. I didn’t know I could just switch like that. I’m post transplant of 4 and a half yrs. Can I do that? Just switch? I’d love to! Everything you say about being tired sounds normal to me. Everyday of my life I struggle with having no energy. I can’t stand even getting up to go to the bathroom. It gets that bad sometimes. Takes me hours in the morning to get ready for the day. I’m only 51 and I hate it! If I didn’t take meds to get me going in the morning,I’d never leave the house! The medicine gives me energy and wakes my body up enough to get threw the day. So,fatige I do understand. I think that’s spelled wrong.sorry!

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@rodney9999

Regarding fatigue prior to transplant….I got to the point where I got to the kitchen to do household chores and needed a nap afterwards. I was still able to get to the grocery store but would only walk through the produce isle since walking around the entire store was a challenge due to terrible cramping.

Post liver transplant my fatigue and leg pain vanished. The other day I went for a 5 mile walk and wasn’t even tired. I still cannot believe it and am just very grateful to all the amazing doctors out there.

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Wow, that sounds great! I’m happy for you. Keep doing what your doing!¡

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@racing212

I do. They let me take breaks when i want and sometimes i go in the bosses office and play cribbage while i rest…. I leave if i get to tired and nap at times in the lunch room

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Your job sounds great! Were you ever disabled during transplant? Before or after?

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I am disabled now because i had 4 back surgeries .i have not had a transplant yet. I'm on the waiting list

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@rowdyramsey

I have not tried Hopkins. I didn’t know I could just switch like that. I’m post transplant of 4 and a half yrs. Can I do that? Just switch? I’d love to! Everything you say about being tired sounds normal to me. Everyday of my life I struggle with having no energy. I can’t stand even getting up to go to the bathroom. It gets that bad sometimes. Takes me hours in the morning to get ready for the day. I’m only 51 and I hate it! If I didn’t take meds to get me going in the morning,I’d never leave the house! The medicine gives me energy and wakes my body up enough to get threw the day. So,fatige I do understand. I think that’s spelled wrong.sorry!

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@rowdyramsey Of course you can go Hopkins. Patients often forget, they are the consumer. The doctors and hospitals work for you, they get paid by the patient or the patient's insurance.
Please call their transplant department and tell them you are post-transplant and need a second opinion. When you are able to get in there, please post and let us know what they have to say.
JK

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@contentandwell

@rowdyramsey Of course you can go Hopkins. Patients often forget, they are the consumer. The doctors and hospitals work for you, they get paid by the patient or the patient's insurance.
Please call their transplant department and tell them you are post-transplant and need a second opinion. When you are able to get in there, please post and let us know what they have to say.
JK

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Then I will do it! I will let you know what happens! Thanks

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@racing212

I am disabled now because i had 4 back surgeries .i have not had a transplant yet. I'm on the waiting list

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Thank you for updating me. Let me know if u have questions or concerns. Now that I know you have not had the transplant,your messages make a whole lot more sense!

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@rowdyramsey

I was treated at the University of Maryland. That’s where our shock trauma is located. I also had the opportunity to go to John Hopkins. Most people out of state have heard of Hopkins. Have u? My post treatment was great the first 8 months maybe. Then it went to hell.I never hardly hear from them. I do have an appointment with the liver people on November 26th. Wonder if they will say or do anything about what’s happening to me. I doubt it highly. Will let u know!

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@rowdyramsey, I will be thinking about you next week when you meet with the liver people. Actually, I am thinking about you now as I imagine that you are anxiously awaiting and planning for the appointment.

-Do you have someone who can go with you to the appointment? I find that I need an extra set of ears to help me remember and understand what the doctor says.
-Do you have any questions that you want to ask? It helps me to make a written list ahead of time, and then I list them in the order of importance to me, just in case time runs out.
-In your response you mentioned that you "wonder if they will say or do anything about what’s happening to me". I would not leave this important information to chance. Please take the information with you, because they need this history amd medications involved. in order to better address your current liver health.

What questions do you have as you prepare? How can I and the members of this group help you to prepare for this visit?

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Thank u for ur kind words once again. Well, 2 things come to mind that I need from the doctor. One,what has happened to my eating. I’m never hungry and always nauseated. I eat about !00-max 500 calories a day. I can’t stop the weight loss. I feel like I’m disappearing! No doctor has helped with this. Oh,I has a colonoscopy 2 weeks ago. He said my nausea could be from excessive scar tissue. He called yesterday and said he needed another test done on me. He said he needs to investigate my stomach.(I also need someone to go and listen with me cause I forget or don’t understand. He already did an endoscope where they put a t.v. down my essopegus. Spelled wrong!. Anyway,didn’t that test check out the stomach already. I’m not sure what the test is called but I’m sure I will get the info soon. The second thing is I want them to run tests on my memory! Somehow,I don’t know how,I truly believe I’m suffering from permanent brain damage due to the HE. We will see what happens on the 26th when I see my liver doctor. I don’t even know how often I should have my blood drawn. I go 6-7 months without testing and no one has told me otherwise. They suck at following up. This appointment is with the liver team at University. After this check up I might just switch to Hopkins. Can u think of anything else I should tell them or ask them?

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@rowdyramsey

Thank u for ur kind words once again. Well, 2 things come to mind that I need from the doctor. One,what has happened to my eating. I’m never hungry and always nauseated. I eat about !00-max 500 calories a day. I can’t stop the weight loss. I feel like I’m disappearing! No doctor has helped with this. Oh,I has a colonoscopy 2 weeks ago. He said my nausea could be from excessive scar tissue. He called yesterday and said he needed another test done on me. He said he needs to investigate my stomach.(I also need someone to go and listen with me cause I forget or don’t understand. He already did an endoscope where they put a t.v. down my essopegus. Spelled wrong!. Anyway,didn’t that test check out the stomach already. I’m not sure what the test is called but I’m sure I will get the info soon. The second thing is I want them to run tests on my memory! Somehow,I don’t know how,I truly believe I’m suffering from permanent brain damage due to the HE. We will see what happens on the 26th when I see my liver doctor. I don’t even know how often I should have my blood drawn. I go 6-7 months without testing and no one has told me otherwise. They suck at following up. This appointment is with the liver team at University. After this check up I might just switch to Hopkins. Can u think of anything else I should tell them or ask them?

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@rowdyramsey You have come up with some great things to ask. May I suggest you write all this down, don't rely on your memory! I know for me, I get wrapped up in the appt and then forget to address something, or don't hear what dr is saying. And write down their answers to you. Be sure you can take someone with you so it will help you get all the information exchanged. Can you handle something like Ensure products, that will give you some nutrition? We will be waiting to hear how it goes for you next week.
Ginger

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@gingerw

@rowdyramsey You have come up with some great things to ask. May I suggest you write all this down, don't rely on your memory! I know for me, I get wrapped up in the appt and then forget to address something, or don't hear what dr is saying. And write down their answers to you. Be sure you can take someone with you so it will help you get all the information exchanged. Can you handle something like Ensure products, that will give you some nutrition? We will be waiting to hear how it goes for you next week.
Ginger

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Thank you so much for responding. I will be taking my husband of 20 yrs with me to the docs. I also need to write it down like you suggested . I will keep posting for advise and fellowship. The fellowship is crucial! Thanks to all who contribute!

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