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!

@banzai

Belly swollen. Hurt to tears. What to do

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@banzai,
Jim, Have you called your doctor?
When my belly got swollen and hurt, it was time for a paracenthesis which is a procedure to drain the excess fluids off your abdomen. I had many of the other symptoms that you have alrady described.
Get it checked. Make the call to your doctor.
Hugs to you. I know what you are feeling. Keep me updated.

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@suecreader

Thank you so much for your research and support @rosemarya. I very much appreciate this info. Turns out I had the term wrong since when I was encouraging and reiterating your message about joining the Connect group, I was informed that the condition was Psoriatic Arthritis, and it turns out that this is also affecting his liver. I guess by the time I got home, I was thinking cirrhosis due to the impact on the liver. Would I possibly find info about the Psoriatic Arthritis under Auto Immune Diseases? I am encouraging him to joint this group.

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Sue, I have located a discussion in the autoimmune group.
Autoimmune Diseases > Psoriatic Arthritis
https://connect.mayoclinic.org/discussion/psoriatic-arthritis-257d5c/
Your friend can read thru the posts. I encourage him to join Connect as a member, because then he can actively participate by asking questions that relate to his concerns. He is also welcome to the Transplant group where some members have experienced other autoimmune related conditions that developd into organ failure. .
Regardless of the source/cause for liver failure, we all share similar fears, and symptoms. He is welcome to join us anytime. He does not need to be alone. And, Sue, you are also welcome. I admire your dedication to helping your friend.

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@banzai

Belly swollen. Hurt to tears. What to do

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@banzai Get on the phone and call whatever doctor is caring for your liver problems. It sounds as if you have extreme ascites. I did not have that until the last month prior to when I finally got my transplant but at that point, I gained 35 pounds from retaining fluid. I know some people have a procedure where the fluid is removed. I never had that.
Please take care.
JK

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@rosemarya

Sue, I have located a discussion in the autoimmune group.
Autoimmune Diseases > Psoriatic Arthritis
https://connect.mayoclinic.org/discussion/psoriatic-arthritis-257d5c/
Your friend can read thru the posts. I encourage him to join Connect as a member, because then he can actively participate by asking questions that relate to his concerns. He is also welcome to the Transplant group where some members have experienced other autoimmune related conditions that developd into organ failure. .
Regardless of the source/cause for liver failure, we all share similar fears, and symptoms. He is welcome to join us anytime. He does not need to be alone. And, Sue, you are also welcome. I admire your dedication to helping your friend.

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You're the best Rosemary – thank you so much for taking the time to do this. Thank you for your validation; however, you are the one who has done the legwork. You deserve a medal at the very least.

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@rosemarya

I am constantly amazed at the level of support and compassion that all of our members are share so generously. And with that in mind, I want to drop in on some recently acitve members who came here for support for updates.

@nanaking, I am thinking about you and your brother on this rainy Kentucky morning. Were you able to schedule an appointment at UC? Will he need to be re-evaluated for the Ohio transplant list?

@frankw54, How are you getting along as you begin your 2nd year with your new liver? The last time we talked, you were wondering what to do with your time. What kind of ideas have you come up with? (I know that @contentandwell would welcome your experience in the HE discussions)

@godlygal, I hope that you have found a sense of peace and direction with your caregiver role for your friend. How are you getting along? What kind of support are you getting? How can I help you?

@shelly63, I was not familiar with Budd-chiari, so I googled it. https://rarediseases.org/rare-diseases/budd-chiari-syndrome/
I also had a rare liver disease (PSC). I am thinking about you. How did your appointment go?

Members old and new – Add your updates, too.

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@rosemarya
Update on my itchy rash
After consulting my PCP and 2 dermatologists the conclusion is ecxema. It is just starting to phase out and I am hoping it continues that way. I have a collection of medications creams shampoos etc and truly none of them gave me much relief. I also have had asthma flare ups and I understand this goes along with eczema and liver disease. Does anyone have more info on how this all works and if they have any advice.

Also…the State of FL is working very hard with our Congressmen and our new Governor DeSantis to fix the environmental disaster with our waterways and Gulf. The red tide, microcystins and blue green algae have put a major dent in our tourism. We now know for sure that the microcystins are very harmful to the liver and that the airborne particles are far more prevalent than first discovered. We are now paying attention…much too late. The rest of the country is comparing notes with their waterways and hopefully we can all get the information we need to be aware of what is a very serious danger to us all…especially those of us with liver disease.

Hoping all of you had a great Valenine's Day!

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@rrichardparker

I am 6 years past my liver transplant

Support groups are very good with support. Just talking to people in the same boat as you leavens the horror of your situation.

Post transplant too.

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Hi I am 18 months post liver transplant and struggling to keep it all together. I am physically fine, just emotional, anxiety, and depressed.
no drive left it seems.

michael

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Michael, I want to welcome you to Mayo Connect. I am a transplant recipient, a patient like you. I congratulate you for the past 18 months of new life with your new organ. I don't believe that what you are experiencing is unique to liver transplant patients alone.
Have you discussed this with your medical team because it could be relted to mediciation or an underlying cause. Here is something from the Newsfeed that I want to share with you while we wait for others to drop in with their experiences: NewsfeedPost-Transplant Mental Health & Well-being: Q&A with Shelia Jowsey-Gregoire, M.D.
https://connect.mayoclinic.org/page/transplant/newsfeed/post-transplant-mental-health-well-being-qa-with-shelia-jowsey-gregoire-m-d/
@danab, I know that you are a heart transplant recipient. Have you experienced any similar symptoms with your new transplant?

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@fyrehoose

Hi I am 18 months post liver transplant and struggling to keep it all together. I am physically fine, just emotional, anxiety, and depressed.
no drive left it seems.

michael

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@fyrehoose Hi Michael and welcome to Connect.
Congratulations on your transplant. I had a liver transplant in September 2016 in Boston.
I’m sorry to hear you’re suffering from depression. Can you identify what may be causing it at all? As Rosemary commented, perhaps medications could cause it. I did not have depression but medications can affect each person differently. I do often feel sadness that a family is grieving, but I cannot change that, I can only pray for them. The article in the link that Rosemary sent is very good. I just re-read it to refresh my mind. I hope you can find some worthwhile strategies in it.
If your depression continues you should seek some help. I know many people find great success in counseling.
I will be thinking of you, and hoping that you will feel better soon.
JK

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@fyrehoose

Hi I am 18 months post liver transplant and struggling to keep it all together. I am physically fine, just emotional, anxiety, and depressed.
no drive left it seems.

michael

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@fyrehoose Hello Michael. I had my liver transplant Nov 28 2018. I also am experiencing depression and anxiety. I believe most of it stems from all the complications I am experiencing post transplant. Ive had surgery twice and three procedures that have not worked leading me to severe pancreatitis and more time in the hospital than out. I keep hoping this will be over soon and I can start living again. Please talk to your doctors. They are there to help. Also support grom thus great Mayo Connect team will help keep you motivated. My thoughts are with you.

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@fyrehoose

Hi I am 18 months post liver transplant and struggling to keep it all together. I am physically fine, just emotional, anxiety, and depressed.
no drive left it seems.

michael

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Hi @fyrehoose
It hurts to know you are hurting. Our whole community is here online to support you and listen. Your are brave to share your struggles and I have no doubt your bravery will help someone else who comes along in the future with your same concerns. I felt so bad at one point after transplant that I went in to my primary care dr. and told her how tired I was all of the time she was very understanding and referred me to physical therapy and it made a huge difference. Looking back it seems silly that I felt so guilty complaining to her, I guess I knew how lucky I was to have gotten a transplant and I didn't think I had the right to feel bad. You deserve good things, your deserve to feel good, who knows maybe your Dr. will find an easy fix like mine did something small like a change of meds, some PT, a few counseling sessions can make a world of difference. You deserve to feel good.

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@gaylea1

@fyrehoose Hello Michael. I had my liver transplant Nov 28 2018. I also am experiencing depression and anxiety. I believe most of it stems from all the complications I am experiencing post transplant. Ive had surgery twice and three procedures that have not worked leading me to severe pancreatitis and more time in the hospital than out. I keep hoping this will be over soon and I can start living again. Please talk to your doctors. They are there to help. Also support grom thus great Mayo Connect team will help keep you motivated. My thoughts are with you.

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Powerful stuff coming from you to someone who desperately needs it.
Keep good thoughts in ypur minds. HIGS TO YOU BOTH!

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@contentandwell

@fyrehoose Hi Michael and welcome to Connect.
Congratulations on your transplant. I had a liver transplant in September 2016 in Boston.
I’m sorry to hear you’re suffering from depression. Can you identify what may be causing it at all? As Rosemary commented, perhaps medications could cause it. I did not have depression but medications can affect each person differently. I do often feel sadness that a family is grieving, but I cannot change that, I can only pray for them. The article in the link that Rosemary sent is very good. I just re-read it to refresh my mind. I hope you can find some worthwhile strategies in it.
If your depression continues you should seek some help. I know many people find great success in counseling.
I will be thinking of you, and hoping that you will feel better soon.
JK

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@fyrehoose
Realizing you are depressed is half the battle
Understanding what makes you depressed is the puzzle.
My problem is I have so many things to be depressed about…Im overwhelmed. So since I cant figure it out…I let it all go and focus on one little thing I can do to make someone feel happy each day. Every night I think about that one thing I did.
It helps me…
When that doesnt work…get on this Connect line..we are here for each other.
Xoxo

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Liver n other organ caused gall stones which said no problem now had tests here's n said it wasn't fluid to drain but bowel blocked
Have try organ surgery in am
5 days fluids only got eat jello n some beef tips nnrice
On antibiotics n diuretic
Cold in here but have sweats n blankets
I try move but bed rest too
Ttyl
Jim.

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@banzai

Liver n other organ caused gall stones which said no problem now had tests here's n said it wasn't fluid to drain but bowel blocked
Have try organ surgery in am
5 days fluids only got eat jello n some beef tips nnrice
On antibiotics n diuretic
Cold in here but have sweats n blankets
I try move but bed rest too
Ttyl
Jim.

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Jim, I am sorry to hear about this. I am happy that you are getting some treatment, though. It's not very pleasant sounding, but it does sound like you are getting some good care. I remember liquid diets, and they are not any fun – even when you probably don't feel like eating anything. I hope you get some rest tonight and that the belly pain is getting better. I send my hopes and a prayer that your surgery goes well and that you will soon be in recovery.

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