1. < Addiction & Recovery

Alcohol Withdrawal Program Required for Transplant

Posted by itsme623 @itsme623, Feb 26 1:06pm

I have been in the evaluation phase of a liver transplant for almost a year. I have had at least 5 hospital stays during this time for bacterial blood infections related to Whipple surgery 6 years ago. Also, most recently, my husband had a heart valve replacement. I have not yet completed a 12 to 24 hour alcohol withdrawal program that is required to be listed. My last alcoholic drink was over a year ago on January 5th, 2023, and I experienced no withdrawal. I have been searching very hard for an online program. I cannot find one that fits, including 3 that were recommended to me by Mayo. I need it to be online, a minimum of 12 hours, to receive a certificate of completion, and to be affordable. My husband and I are both in our 70s and are living on a retired income. I understand that we could fundraise, but it just doesn't sit well with either of us. I ought to be able to find what I need without that. Any suggestions?

Interested in more discussions like this? Go to the Addiction & Recovery Support Group.

itsme623 | @itsme623 | Mar 3 2:38pm
In reply to @myfablife "Itsme623, Omgosh I think that’s totally ridiculous, I mean when u r waiting for your TP..." + (show)
@myfablife

Itsme623, Omgosh I think that’s totally ridiculous, I mean when u r waiting for your TP they do blood test on a regular bases and test you for every drug,smoking, alcohol etc.,
You are out one year alcohol free.
Have you already had your TP eval and this is the last step for you. How are your blood results, r u feeling ok, do you have cirrhosis. I know it’s a lot to go thru so I am definitely thinking about you. It’s a journey with a lot of ups/downs. 💪

Jump to this post

Yes, this is the last step to my evaluation. It has been over a year already. I feel okay physically, but I am developing encephalopathy which is making this last step even more difficult.

It's funny, during the initial evaluation when I talked with a lot of different people at Mayo, 3 times I was asked when was my last drink. I gave each one a different answer because it was such a non-event. Later, my husband and I sat down and thought about it. I didn't know there was going to be a test!

REPLY
1 reply
myfablife | @myfablife | Mar 3 3:44pm
In reply to @myfablife "Itsme623, Omgosh I think that’s totally ridiculous, I mean when u r waiting for your TP..." + (show)
@myfablife

Itsme623, Omgosh I think that’s totally ridiculous, I mean when u r waiting for your TP they do blood test on a regular bases and test you for every drug,smoking, alcohol etc.,
You are out one year alcohol free.
Have you already had your TP eval and this is the last step for you. How are your blood results, r u feeling ok, do you have cirrhosis. I know it’s a lot to go thru so I am definitely thinking about you. It’s a journey with a lot of ups/downs. 💪

Jump to this post

Hi, I understand if it’s a mandatory “I guess” my situation was a little different, I was in end stage liver disease and was in need of a liver quickly. I was diagnosed in 1/20 was put on the TP list 10/20. Was a liver recipient on 10/26/20. I am so blessed and grateful. I had a GREAT TP team/surgeons. My Dr. told me in my evaluation you are an excellent candidate. I had 2 dry runs but the third was the one.😊💚
Please keep us up dated on how u r doing..

REPLY
1 reply
myfablife | @myfablife | Mar 3 3:50pm
In reply to @itsme623 "Yes, this is the last step to my evaluation. It has been over a year already...." + (show)
@itsme623

Yes, this is the last step to my evaluation. It has been over a year already. I feel okay physically, but I am developing encephalopathy which is making this last step even more difficult.

It's funny, during the initial evaluation when I talked with a lot of different people at Mayo, 3 times I was asked when was my last drink. I gave each one a different answer because it was such a non-event. Later, my husband and I sat down and thought about it. I didn't know there was going to be a test!

Jump to this post

I was hospitalized with HE it was the most horrible thing I have ever been thru. Yes it was a test for sure I knew the exact date that I quit alcohol 1/27/20. but if you were dealing with HE things get very crazy!!!
How r your labs/ meld score doing?

REPLY
1 reply
klm3 | @klm3 | Mar 3 4:05pm
In reply to @itsme623 "Thanks so much, Colleen. I had checked out Monument, and it must have been the price..." + (show)
@itsme623

Thanks so much, Colleen. I had checked out Monument, and it must have been the price that caused me to move on. Also, there is a program I had found under SAMHSA called CBT4CBT developed by the National Institute of Alcohol Abuse and Alcohol Addiction. From what I could tell, you have to find your own clinician to follow you online which I tried to do without any luck. It looked like I could really relate to it so I pressed on. I eventually went to my doctor who, in turn, went to Mayo and asked for more help. Unfortunately, CBT4CBT has only 7 parts, not the required 12 minimum so I gave up on that one. As it stands now, I have reached out to 2 counselors, one with Ellie Mental Health and the other with Growth Therapy. We will see if they can help.

Tomorrow is the big day to find out if either one of these counselors can help. I have filled out all their online forms.

Thank you, thank you, thank you for taking the time to offer so much help!

Jump to this post

Best of luck.

REPLY
itsme623 | @itsme623 | Mar 3 5:02pm
In reply to @myfablife "Hi, I understand if it’s a mandatory “I guess” my situation was a little different, I..." + (show)
@myfablife

Hi, I understand if it’s a mandatory “I guess” my situation was a little different, I was in end stage liver disease and was in need of a liver quickly. I was diagnosed in 1/20 was put on the TP list 10/20. Was a liver recipient on 10/26/20. I am so blessed and grateful. I had a GREAT TP team/surgeons. My Dr. told me in my evaluation you are an excellent candidate. I had 2 dry runs but the third was the one.😊💚
Please keep us up dated on how u r doing..

Jump to this post

Wow, that was fast for you once you got listed. I hope I get the notice quickly. They have been calling mine end stage liver disease for over a year. I feel okay pretty much, just really tired a lot of times. I was diagnosed with MDS a few months ago which adds to the fatigue. But, this darn encephalopathy thing is really making life difficult. Our son is developmentally disabled and there is a lot of time consuming things and paperwork with which I've been struggling to get done. I would love to have a couple of clear minded days to catch up!

REPLY
itsme623 | @itsme623 | Mar 3 7:01pm
In reply to @myfablife "I was hospitalized with HE it was the most horrible thing I have ever been thru...." + (show)
@myfablife

I was hospitalized with HE it was the most horrible thing I have ever been thru. Yes it was a test for sure I knew the exact date that I quit alcohol 1/27/20. but if you were dealing with HE things get very crazy!!!
How r your labs/ meld score doing?

Jump to this post

The last I knew, my meld score was 14. When I was diagnosed, it was 7. It wasn't long before I had 2 more bacterial infections in my blood and it shot up and then settled back down to 11 or 12. I had another infection and went to the hospital just this past Thanksgiving Day. I think it had settled down at 14 after that? I don't know for sure as timing in my head is way off. I think something was a week ago and my husband tells me it was 2 days ago. I must be a real joy to live with! LOL

REPLY
2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 4 7:38am
In reply to @itsme623 "The last I knew, my meld score was 14. When I was diagnosed, it was 7...." + (show)
@itsme623

The last I knew, my meld score was 14. When I was diagnosed, it was 7. It wasn't long before I had 2 more bacterial infections in my blood and it shot up and then settled back down to 11 or 12. I had another infection and went to the hospital just this past Thanksgiving Day. I think it had settled down at 14 after that? I don't know for sure as timing in my head is way off. I think something was a week ago and my husband tells me it was 2 days ago. I must be a real joy to live with! LOL

Jump to this post

@itsme623, Before my transplant, I was also hospitalized and/or treated with medications on several occasions. I can understand how confusing it can be. Although I did not have any HE episodes, I think that I had more than my fair share of end stage liver symptoms. And so I want to share something that helped me mentally was to keep a note book available where I wrote down dates and events (medical and personal). I found it also helpful to make short notes of symptoms and questions for my doctor.
I am wondering if there is anyone who can help you with that stack of paperwork?

REPLY
itsme623 | @itsme623 | Mar 4 8:06am

What a great idea with the notebook. Since my mind is getting so foggy, that would help with a lot of things. It certainly would clear up all of the post-it notes I have all over the counter! Although it isn't his strong suit, my husband took over paying the bills awhile ago which has helped immensely - for which I am most grateful. My supportive, patient husband - I can't imagine where I would be without him. I do worry about his stamina during my recovery. My sister has agreed to come and stay with us for awhile and be Jim's co-caregiver.

Unfortunately, there is no one I have to take care of all the things I have to do. I just need about a week with no interruptions and a working mind! Oh, and I need time to be on this blog. 😊

REPLY
myfablife | @myfablife | Mar 5 12:55pm
In reply to @itsme623 "The last I knew, my meld score was 14. When I was diagnosed, it was 7...." + (show)
@itsme623

The last I knew, my meld score was 14. When I was diagnosed, it was 7. It wasn't long before I had 2 more bacterial infections in my blood and it shot up and then settled back down to 11 or 12. I had another infection and went to the hospital just this past Thanksgiving Day. I think it had settled down at 14 after that? I don't know for sure as timing in my head is way off. I think something was a week ago and my husband tells me it was 2 days ago. I must be a real joy to live with! LOL

Jump to this post

Yes my meld score was much higher, that is why you have labs so often to help get you on the TP list.
I hope you can find someone to help give you a break/some help. I also see your dealing with other medical issues to, I know that is not easy either. I am glad you have your husband to lean on.
Again I wish you the best I know it’s hard.

REPLY
itsme623 | @itsme623 | Mar 18 4:28pm

Just as a follow-up to anyone looking to fulfill this requirement for getting on the list, I am currently taking enrolled at http://www.selfrecovery.org. It is an excellent program. I'm getting a lot out of it, especially the mindfulness sessions. Highly recommend it.

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.