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

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 I’m glad you are getting some care for your swollen and painful belly. You mention surgery. I presume that is gallbladder surgery. I’m sure all will go well and you will be feeling much better in a couple of days. Let us know how it goes.
JK

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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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Hello, Gaylea. You remain in my thoughts as I hope for your condition to improve and lead you to a comfortable state of recovery. Stay warm and get some good rest.
When you feel up to it, send us an update.
Hugs.

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@jeanne5009

@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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Are you getting some relief from the itching? I really hope that you are. You deserve it after all the suffering you have gone through.

I have heard similar things about how many these different conditions can be related to liver disease. But as of the moment, I have not located anything factual to share with you. I'll keep looking. Maybe someone else has a resource connects eczema/asthma/liver disease to share with you.

Not being in Florida, I had forgotten about the algae problem that you are experiencing. I hope that with different agencies working together that something can be done about it, or at least the knowledge of what kind of health problems are involved by breathing it.

Liver-wise, how are you getting along?

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@rosemarya

Are you getting some relief from the itching? I really hope that you are. You deserve it after all the suffering you have gone through.

I have heard similar things about how many these different conditions can be related to liver disease. But as of the moment, I have not located anything factual to share with you. I'll keep looking. Maybe someone else has a resource connects eczema/asthma/liver disease to share with you.

Not being in Florida, I had forgotten about the algae problem that you are experiencing. I hope that with different agencies working together that something can be done about it, or at least the knowledge of what kind of health problems are involved by breathing it.

Liver-wise, how are you getting along?

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Not good going sleep

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@banzai

Not good going sleep

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I pray that tomorrow is better.

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@calikellyw

I've been looking all over the place for a Mayo only related support group. Finally stumbled across this one this morning. I've had my liver disease for five years, first listed at UCLA then for the past 2 1/2 years listed at the Mayo Phoenix Clinic. I'm still on the waiting list in MELD purgatory. Just wanted to say Hi

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@calikellyw hello and welcome. I am a new transplant recipient (Nov 28 2018).
I felt I was stuck in the MELD purgatory at one point myself. My MELD was 30 for a long time. I did get my liver at 17 months on the wait list. If you don't mind me asking what is your current MELD score?
You will find this group informative and very supportive. Sharing their experiences helped me through many difficult times. I wish you a speedy journey.

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I've been looking all over the place for a Mayo only related support group. Finally stumbled across this one this morning. I've had my liver disease for five years, first listed at UCLA then for the past 2 1/2 years listed at the Mayo Phoenix Clinic. I'm still on the waiting list in MELD purgatory. Just wanted to say Hi

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@gaylea1

@calikellyw hello and welcome. I am a new transplant recipient (Nov 28 2018).
I felt I was stuck in the MELD purgatory at one point myself. My MELD was 30 for a long time. I did get my liver at 17 months on the wait list. If you don't mind me asking what is your current MELD score?
You will find this group informative and very supportive. Sharing their experiences helped me through many difficult times. I wish you a speedy journey.

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It was at 22 for a long time, then has been going down and last labs in January it dropped to 9!! My back is degeneration from a separate problem and I have mast cell activation making eating a challenge. The docs are monitoring a lesion on my liver and I go back for another MRI on April 23rd with new labs.

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@calikellyw

I've been looking all over the place for a Mayo only related support group. Finally stumbled across this one this morning. I've had my liver disease for five years, first listed at UCLA then for the past 2 1/2 years listed at the Mayo Phoenix Clinic. I'm still on the waiting list in MELD purgatory. Just wanted to say Hi

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Hi @calikellyw, I'd like to add my welcome to @gaylea1's. I'm glad you found Mayo Clinic Connect. You'll notice that I moved your message to this liver transplant support discussion. I did this so you can meet other liver transplant recipients and people waiting for a transplant like Gayle, @rosemarya @jeanne5009 @contentandwell and many others.

You may also be interested in these discussions:
– Liver disease itching https://connect.mayoclinic.org/discussion/liver-disease-itching/
– Post Liver transplant story https://connect.mayoclinic.org/discussion/post-liver-transplant-story/
– It's not all about the MELD Score https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/

We look forward to getting to know you. What questions might you have? How are you feeling these days?

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Thanks for moving me. I don't have any questions right now. I'm tired and in pain but that is the norm these days. I am curious if anyone else went through the bariatric sleeve procedure with their transplant and what they think of it. I'm being asked to do this and I've been to the seminar but I'm curious about life a year or so afterwards with a new liver and bariatric. Do it again? Wish you would have done it? Wish you wouldn't have? You get used to it? I have the bariatric evaluation day coming up next month to answer my medical questions but was wondering on a personal level.

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@calikellyw

I've been looking all over the place for a Mayo only related support group. Finally stumbled across this one this morning. I've had my liver disease for five years, first listed at UCLA then for the past 2 1/2 years listed at the Mayo Phoenix Clinic. I'm still on the waiting list in MELD purgatory. Just wanted to say Hi

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Hi, @calikellyw. I am happy to meet you and I offer you my support as you move forward to whatever lies ahead. I received my liver and kidney at Mayp in Rochester in 2009. My liver failure and subsequent kidney failure were caused by a rare disease, PSC (Primary Sclerosing Cholangitis). Although you and I have different diagnoses, I know that the fears, the uncertainty, and symptoms are very much alike.
I am here anytime you have any questions and I am here if you simply want to talk. I look forward to hearing from you.

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@calikellyw

I've been looking all over the place for a Mayo only related support group. Finally stumbled across this one this morning. I've had my liver disease for five years, first listed at UCLA then for the past 2 1/2 years listed at the Mayo Phoenix Clinic. I'm still on the waiting list in MELD purgatory. Just wanted to say Hi

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Hi @calikellyw and welcome to Connect from me too. 🙂 I can't imagine being listed for so long, waiting! You must bed doing well though if your MELD is at 9 now, that's great.
I was waiting for not quite a year and a half at Mass General Hospital in Boston. I do know that in CA the waits are generally longer and they tend to transplant at higher MELDs. Massachusetts was that way too but I somehow got fortunate and got my transplant at MELD 28. It was a good thing I did because during the six weeks prior to transplant I was going downhill.

I did not have a bariatric sleeve but I did lose quite a bit of weight prior to transplant — working at it, not because I was ill and not eating. I wanted to lose weight because I felt it would help in my recovery. I read recently that they are feeling the bariatric surgery is a better option because then the patient is less apt to gain weight afterward. I must admit I have gained 10 pounds back and am struggling to lose them now.

Please feel free to ask any questions you would like answered. We each tend to have our own unique experiences with waiting and post-transplant.
JK

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Thank You very much. My concern is that I feel great right now, however my Liver and Kidney numbers are in decline. The main concern is what can I expect if I don't try for a transplant and just do Dialysis. I was told by one Dr. (not associated with the MAYO that I had 2 Years (diagnosis a year ago). So my mind tells me my chances would be far better with a transplant, however I do have questions, and it's wonderful to hear from people like you of the success you have. Thank You – Ben Lambert in Las Vegas

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@contentandwell

Hi @calikellyw and welcome to Connect from me too. 🙂 I can't imagine being listed for so long, waiting! You must bed doing well though if your MELD is at 9 now, that's great.
I was waiting for not quite a year and a half at Mass General Hospital in Boston. I do know that in CA the waits are generally longer and they tend to transplant at higher MELDs. Massachusetts was that way too but I somehow got fortunate and got my transplant at MELD 28. It was a good thing I did because during the six weeks prior to transplant I was going downhill.

I did not have a bariatric sleeve but I did lose quite a bit of weight prior to transplant — working at it, not because I was ill and not eating. I wanted to lose weight because I felt it would help in my recovery. I read recently that they are feeling the bariatric surgery is a better option because then the patient is less apt to gain weight afterward. I must admit I have gained 10 pounds back and am struggling to lose them now.

Please feel free to ask any questions you would like answered. We each tend to have our own unique experiences with waiting and post-transplant.
JK

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Weight has been a lifelong problem, especially since I was a Desk Jockey for 30 years. I'm at 250 lbs despite exercise, so I am interested in doing whatever. Lately I've been told less than 2 gems of sodium per day, only low potassium foods and a low carb diet. It's getting absurd and I would like for one of these nutritionists to come up with a month long diet tailored for me, instead of here in Las Vegas just having them basically read their book to me.

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@benlam11

Weight has been a lifelong problem, especially since I was a Desk Jockey for 30 years. I'm at 250 lbs despite exercise, so I am interested in doing whatever. Lately I've been told less than 2 gems of sodium per day, only low potassium foods and a low carb diet. It's getting absurd and I would like for one of these nutritionists to come up with a month long diet tailored for me, instead of here in Las Vegas just having them basically read their book to me.

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@benlam11 I too wanted to lose weight before my liver transplant. I actually already was, and I used myfitnesspal.com to help me. You have to be honest with it, if you are not you are only cheating yourself. You put in everything you eat and drink each day. Sometimes it's surprising when you see the nutrients in various foods. You can tell it your current weight and your goal and when you are done recording everything for the day it tells you "if you do every day like this you will weight XXX in five weeks. So it is encouraging. If you don't eat enough it won't give you the end of day numbers!
I lost a total of about 90 pounds overall, some before any of this, and I have in the last year gained back 10 so I am back to using myfitnesspal to try to drop those 10 pounds.
I did also use a fitness tracker to keep motivated with exercise, and I have a great scale, it tells you how much of your weight is fluid! I realize it is not medically accurate, but it is a good gauge. If my weight goes up but I see I am retaining fluid, I don't feel as bad and I know I have to be even more diligent about not ingesting sodium.
Good luck with the weight loss, and also with your future plans. I understand the wait for a kidney transplant is even longer than it was for a liver transplant. I don't think that getting a transplant depends on when you got listed, it depends on your condition.
JK

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