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!

@livertrex

Long yes. But worth it. You learn a lot about your self and make friends. If they ask you relocate do it. It was in and received a liver in 5 day. God answers prayer.

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@livertrex, What a fantastic picture! Was that taken before you headed home?

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@rosemarya

@livertrex, What a fantastic picture! Was that taken before you headed home?

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Yes

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@rosemarya

Hi @jeanne5009. I did not sleep well prior to transplant. And I remember being unable to get comfortable due to ascites and later edema. I had to prop up with pillows because I was too uncomfortable lying down. I only spent a short period of time in the bed at night, and spent most of my time on the couch. I was also bothered with fatigue.
I didn't take anything for it to protect my liver.
After I experienced acute kidney failure and was flown to Mayo, I was on dialysis. The dialysis along with paracenthesis proedures eased some of the ascites and edema, so I was able to experience some relief to lie in bed (still propped up) for a longer time night and day. I do remember that I could get out of bed and I paced the floor of our bedroom at GOL to pass the time and to relieve the abdominal discomfort.
I am sorry to add that this is probably not the information that you hoped for. I know how time can seem to move in slow motion while waiting. I send my hopes and prayers for some relief.

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@rosmarya
While a lot of you transplant folks tell of pre transplant horrors, I seem to be just passing the time waiting for one of those horrors to happen..lol. Im anticipating some big drama that will start the ball rolling…or…..maybe I will just deal with silly symptoms for the rest of my days….
My summer flew by with OT for my broken hand, PT for my bone spur aggravating my Achilles and of course there is the ever present impinged rotator cuff plus lots of Dr visits. The combined pain was exhausting and didnt make for a happy lady!
Now, the hand is getting better, the foot is under control…no more boot …and the shoulder is still driving me crazy. Insomnia is something no one in my house understands or wants to. I have restless leg with it and flop around like a fish on a dock in bed. I think a lot of this started with the pain. I managed with 1 Tramadol sometimes 2 for most days. My GP has now prescribed Temazepam but we arent able to get it thru insurance. They keep pushing Melatonin which makes me weird with nightmares….a very scary combo. So…since I research everything, I came upon a report that said there was succuss with Hydoxyzine which is an antihistamine that I was given for my itchies from excema. I am anxious to run this by my hepatologist to see what she thinks. Self management is so important but doctors input is too! Communications between the patient and all the Drs is the key.
This is long but it is a little difficult to type on my phone…perhaps I should try to SLEEP! A novel idea!
Be well…you continue to be my heros!

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@contentandwell

@jeanne5009 You are in that difficult time of wanting to be able to get a transplant but to get one you need to get much sicker. I managed to make it to MELD 28 without feeling too bad most of the time. Just the last 6 weeks or so were difficult and even then every day was not bad. I hope your MELD goes up too without you feeling too bad. You have a pretty low MELD, I didn’t think you could even be on the list with such a low one.
JK

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@jk
I am not on the official list but Mayo evaluated me and said I was a good candidate but too early. I go up every 6 mo to be checked out. I'm stage 4 decompensated but low meld. Go figure…

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@jeanne5009

@rosmarya
While a lot of you transplant folks tell of pre transplant horrors, I seem to be just passing the time waiting for one of those horrors to happen..lol. Im anticipating some big drama that will start the ball rolling…or…..maybe I will just deal with silly symptoms for the rest of my days….
My summer flew by with OT for my broken hand, PT for my bone spur aggravating my Achilles and of course there is the ever present impinged rotator cuff plus lots of Dr visits. The combined pain was exhausting and didnt make for a happy lady!
Now, the hand is getting better, the foot is under control…no more boot …and the shoulder is still driving me crazy. Insomnia is something no one in my house understands or wants to. I have restless leg with it and flop around like a fish on a dock in bed. I think a lot of this started with the pain. I managed with 1 Tramadol sometimes 2 for most days. My GP has now prescribed Temazepam but we arent able to get it thru insurance. They keep pushing Melatonin which makes me weird with nightmares….a very scary combo. So…since I research everything, I came upon a report that said there was succuss with Hydoxyzine which is an antihistamine that I was given for my itchies from excema. I am anxious to run this by my hepatologist to see what she thinks. Self management is so important but doctors input is too! Communications between the patient and all the Drs is the key.
This is long but it is a little difficult to type on my phone…perhaps I should try to SLEEP! A novel idea!
Be well…you continue to be my heros!

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@jeanne5009 It sounds as if you are doing somewhat better than you were during the summer, so that's a positive thing. Hopefully things will continue to improve. It's so frustrating to not get enough sleep though. I haven't been too bad most nights recently but when I go through periods of sleepless nights I am really miserable.
By the way, I have read that higher doses of melatonin do tend to cause nightmares. I never take more than 3 mg. There is another medication out there now that has other ingredients with the melatonin but the other two are herbal and things that I cannot take being post-transplant. When I asked them about it at the transplant department they said no, but suggested that I take a second dose of melatonin in the middle of the night if I was awake. You are supposed to take it a couple of hours before going to bed so I did try that the other night (most nights I don't remember until I am going to bed) and then when I woke up about an hour and a half after going to bed I took another. I think it did help, and since a large amount was not in my system at once I didn't have really weird dreams — I do tend to get more dreams than usual though. Some information says it is not really an effective remedy for insomnia. It may not be, I'm not sure. I do not take it nightly, just when I go to bed thinking I will have a problem.

You must be so frustrated to be decompensated but not yet have a high enough MELD to be on the transplant list. Is that due to the changes in how they evaluate it now?

Monday was my third "transplantiversary". I can't believe it's been three years. I thank God for every day I have been given. We went out to dinner to celebrate.
JK

20190922 Transplantiversary dinner

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Im on the list for liver transplant…went to Rochester last week for more tests and found out there's 3 spots that could turn into a tumor. My meld score also went up from 3 months ago. I go back in December for more tests….. Chuck

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Good that they found the precancerous areas early. I had non vascular hepatocelular carsamona in my old liver discovered by the autopsy the old liver. It was in a area that was non-operable. God speed on the new Liver Transplant.

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@racing212

Im on the list for liver transplant…went to Rochester last week for more tests and found out there's 3 spots that could turn into a tumor. My meld score also went up from 3 months ago. I go back in December for more tests….. Chuck

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@racing212, It is good to hear that you are being monitored for this while it is a 'could be' tumor. My Mayo experience is that they will keep a close watch on it for you. I know that this is not a comfortable position to be in. I was believed to have cancer tumors in my bile ducts and my local transplant hospital was unable to get tissue samples so they had to inactivate me from the transplant list until they could get me to the Mayo team in Rochester for the tests. I did not have cancer and was able to be activated again. Rodney, I will be thinking of you during this time.
When you return in December, do you know what kind of tests they will do?
With an increased score, have your symptoms changed any?

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@contentandwell

@jeanne5009 It sounds as if you are doing somewhat better than you were during the summer, so that's a positive thing. Hopefully things will continue to improve. It's so frustrating to not get enough sleep though. I haven't been too bad most nights recently but when I go through periods of sleepless nights I am really miserable.
By the way, I have read that higher doses of melatonin do tend to cause nightmares. I never take more than 3 mg. There is another medication out there now that has other ingredients with the melatonin but the other two are herbal and things that I cannot take being post-transplant. When I asked them about it at the transplant department they said no, but suggested that I take a second dose of melatonin in the middle of the night if I was awake. You are supposed to take it a couple of hours before going to bed so I did try that the other night (most nights I don't remember until I am going to bed) and then when I woke up about an hour and a half after going to bed I took another. I think it did help, and since a large amount was not in my system at once I didn't have really weird dreams — I do tend to get more dreams than usual though. Some information says it is not really an effective remedy for insomnia. It may not be, I'm not sure. I do not take it nightly, just when I go to bed thinking I will have a problem.

You must be so frustrated to be decompensated but not yet have a high enough MELD to be on the transplant list. Is that due to the changes in how they evaluate it now?

Monday was my third "transplantiversary". I can't believe it's been three years. I thank God for every day I have been given. We went out to dinner to celebrate.
JK

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@contentandwell – Happy Transplant Anniversary! You and your husband look wonderfully happy.
I firmly believe in celebrating our successes and especially our transplant! Thanks for sharing.

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@jeanne5009

@jk
I am not on the official list but Mayo evaluated me and said I was a good candidate but too early. I go up every 6 mo to be checked out. I'm stage 4 decompensated but low meld. Go figure…

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@jeanne5009,
I have always been told that by taking good care of ourselves that we will be better prepared for the transplant surgery and recovery when it is time. I had my diagnosed liver disease for nearly 9 years before I had to be listed? And I was closely monitored by my GI during that time with a low score.
Has it ever been decided what has caused your liver condition?

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@rosemarya

@contentandwell – Happy Transplant Anniversary! You and your husband look wonderfully happy.
I firmly believe in celebrating our successes and especially our transplant! Thanks for sharing.

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This site is almost like SPAM !!!! If you register and forget your
password – you cannot retrieve it , if you try to Unsubscribe – you need
your password. So your stuck with endless emails.

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@benlam11

This site is almost like SPAM !!!! If you register and forget your
password – you cannot retrieve it , if you try to Unsubscribe – you need
your password. So your stuck with endless emails.

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Hi @benlam11, I can help. Please send me an email using this form https://connect.mayoclinic.org/contact-a-community-moderator/

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@rosemarya

@racing212, It is good to hear that you are being monitored for this while it is a 'could be' tumor. My Mayo experience is that they will keep a close watch on it for you. I know that this is not a comfortable position to be in. I was believed to have cancer tumors in my bile ducts and my local transplant hospital was unable to get tissue samples so they had to inactivate me from the transplant list until they could get me to the Mayo team in Rochester for the tests. I did not have cancer and was able to be activated again. Rodney, I will be thinking of you during this time.
When you return in December, do you know what kind of tests they will do?
With an increased score, have your symptoms changed any?

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I go back for another ct scan blood work and an ultra sound….

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@racing212

Im on the list for liver transplant…went to Rochester last week for more tests and found out there's 3 spots that could turn into a tumor. My meld score also went up from 3 months ago. I go back in December for more tests….. Chuck

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@racing212 When you go back for more tests will they determine if the “spots” are benign or malignant? I had malignant lesions and they did an ablation to get rid of them. That was more than a year before my transplant which occurred in September 2016.
JK

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@contentandwell

@racing212 When you go back for more tests will they determine if the “spots” are benign or malignant? I had malignant lesions and they did an ablation to get rid of them. That was more than a year before my transplant which occurred in September 2016.
JK

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I just had a liver transplant in August at the Mayo Clinic in Arizona everything went well it's taking a little longer to get back on my feet and I thought ,I guess I had great expectations I'll have the great expectations for you too so congratulations on your liver transplant and the doctor had me go ahead and get a dermatologist in my local community look at Maya dark spots all over my body and give me a plan to move forward with him to make sure that I wore sunscreen. Thank you

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