New to this forum and alcoholic cirrhosis

Hi everyone, I was diagnosed with alcoholic cirrhosis about a year ago (they performed a biopsy). I didn’t take it seriously (if I ignore it, it will go away) and didn’t take the time to find out about it until I spent about a month in ICU in early 2013. I had still been drinking, not wanting to face the fact that I was killing myself slowly and painfully.

I checked myself into treatment and have been attending AA 3-4 times a week since. I have a sponsor and good support group and feel very blessed in that respect. I’ve been sober for 7 months.

I was originally seeing a GI and have recently begun to see a hepatologist. Two times so far. The last was right before my 6 months, and I go again the end of Nov. I have blood work done once a month. The Dr. has me on aldactone, nadalol, and xifaxan, which has helped with the HE. I have good and bad days with that and it mostly affects my sleep, but I also get pretty fuzzy sometimes. I try not to sleep during the day, but I still cannot fall asleep until 4am most nights.

I am also having a hard time gaining weight. I drink ensure and eat a pretty healthy and low sodium diet. I just can’t eat as much as I used to. Plus, I’m afraid to have that horrible fluid retention that I had for so long after the hospital. I’m jaundice but feel good physically and emotionally most of the time. My meld score just went from 20 to 18 (it’s max was 23 before I quit drinking). That seems so high to me for how I feel – but what do I know.

I have had some pre-op tests done (cardiology). Most recently a MRI (or MRA?) of my abdomen and they found an abnormal nodule??? They said they will rescan in 3 months instead of 6. I am assuming the next time I see the Dr. there will be more information about possibly moving forward with getting on a transplant list. We have talked about transplant before but I wasn’t 6 months sober yet. I don’t know – I’m new to all of this…

I just thought that I would introduce myself to everyone and say thank you for all of the things that you post. They have helped quite a bit. And, I’m sure I have a lot more to learn.

Post Edited By Moderator (hep93) : 10/25/2013 11:36:50 PM (GMT-6)

Hello and Welcome to HW. Sounds like you're heading in the right direction with treatment and sobriety. I have been sober for 5 years myself and doing fairly well. I was diagnosed with End Stage Liver disease in 2007 and placed in ICU with a MELD of 28. I struggled through chronic ascites problems for almost a year in which I started seeing a Hepatologist at UNC Chapel Hill NC. Did the 6 months of sobriety through therapy sessions 2 times a week and by then my Meld dropped to 18. I still had fluid issues to the point it almost killed me but UNC intervened and allowed me to receive a TIPS to solve that problem.

You have to be patient. Your body is going through a lot right now and the healing process can take a long time. It took 2 years for me to start my getting weight close to previous numbers and now it hard keeping the weight off. I see my Hepatologist now every 6 months and was removed from the transplant list about a year ago due to low MELD scores. As far as nodules are concerned, UNC has been watching a couple on my liver also. Relax, Worrying about it ain't gonna get you anywhere. Nodules are common with liver disease but so is Cancer and that's why they pay such close attention to them. The important thing is your doing all the right things and getting them checked out.

Your experience so far would be an asset to some of our recent posters and certainly ones to join in the future. If you like you can help others with your experience just as I do. Either way it is nice to hear from someone who struggled through Alcoholic liver disease and progressing so well. Please come back and update us if you can. Take care and congratulations on the sobriety.


Ziff

Post Edited By Moderator (hep93) : 10/27/2013 7:42:28 PM (GMT-6)

I have been trying to post to you, but the posts drift away. Will try again tonight.

Moderator
Hep C/Connie

There is a 6 month mandatory alcohol/drug abstinence period in order to actually be considered for a transplant. You will need to provide a sponsor's signature, Time and date of when you attended AA meetings. Drug/Alcohol testing was mandatory also and was done once a month randomly during that 6 month period. In the event you fail to show proof of 6 months consecutive proof of sobriety they can either boot you out the program or require you to start all over again. I missed 2 sessions with a therapist and she reported it to my doctor, I started over again with 4 months of sobriety already in. This may not be the case with Miami. Carol ( Mama Lama) knows the requirements for that Hospital.

If you read my post above you will see that I was actually a lot higher MELD than you when I went in originally. I was eventually removed off the transplant list 6 months ago due to continual low MELD score of 6 at my last appointment. Your liver will likely not recover from the damage (It doesn't heal like most organs) but you can stop the progression by taking your medications and abstaining from alcohol. At least it's worked for me so far.

Ziff

Eyes,

I too have ALD, end stage unfortunately. My story is different than most because on the day they told me in the hospital that I had ESLD, I quit drinking right there after 30 years and never looked back, that was almost 5 years ago. I never went to AA, didn't need to, but was told a year later that I would need some documentation for the transplant list, so I went to see a certified coucilor for a month and had her write a letter, and MGH was good with that. I think my improving health and negative ethanol tests helped them accept that. Plus they are a bunch of very nice, intellegent people.

I had the same question you did about maybe never needing a transplant as my MELD has dropped to 10 from 20 at diagnosis. My hep said end stage liver disease is progressive, it might pause or seem to improve but someday I will need a new liver.

Good luck to you,

K

Hi Kierstin,
What hepatologist are you seeing at MGH? I was taken care of by Dr. Pratt. He's pretty great. Or, are you being handled by the transplant clinic. Abigail was Dr. Pratt's PA and she was wonderful, too. She now works with the transplant clinic. You can't do any better than MGH. If you email me, I'm on a transplant forum that has a Boston group. It has groups for pre transplant and transplants. I could send you the address if you'd like.

You know, reading this reminded me of my first appt with the hepatologist and the first thing he said after looking over all of my paperwork from the GI and hospital visits was – I can tell you stopped drinking! I will absolutely continue getting documentation. Thanks everyone.

Ziff – It didn’t register that you had been taken off the list in your first response (sorry). That is so great! I couldn’t even walk when I got out of ICU. I was so swollen up until about 2 months ago. I just finished stepping down slowly from lasiks .So I do see a gradual progression of feeling better ever so slowly and in a lot of other ways too. Patience as you said…

I have been tested for Hep C a few different times when I was in the hospital and the results were negative. The PA had called to tell me the results of that MRI and she didn’t sound too concerned. She just said they would scan again in 3 months instead of 6. I probably should have asked more questions, but she caught me off guard. I’m not worrying because that’s not going to help anything at this moment right??

Carol- I live a bout 30 miles away so the drive isn’t too bad (unless it’s rush hour on 95)! They have expanded some offices to the north so some of the testing I am able to get done very close by. I will probably email you at some point. Thank you for the offer.

I can’t tell you how great and what a relief it is to find a place like this with all of your knowledge and experience. I try not to talk details with anyone unless necessary. I do with my husband since he drives me to most of my appts, but I don’t want that to always become the topic of conversation – he’s been through so much already (and a really great man for sticking through all of this with me). Plus, I’ve found that people (friends/acquaintances) ask how I’m doing and now I just always say better. Some of those people distanced themselves some in the beginning. I understand, I’ve been in the opposite shoes – when someone else was sick - and have felt uncomfortable because I didn’t know what to say. It’s easier for me to say better, and it’s not a total fib because I do feel better. I also believe a positive attitude (at least for me) makes a huge difference in my life all around.

Eyes

eyes so glad you found us also. Yes you have a supportive group of people here. One day at a time.. you'll get through it!!

WTG!!

Sandia

While we're here, hey Eyes, how about an update?

Hope all is well.

Call that insurance company and let them know your problem!!


You're on top of things. Hang in there!!!


Sandia

Thanks for your responses.

I just got the news on the MRI from last week. No masses or abnormalities and the dark nodule that they were watching has shrunk. Dr’s office said no cancer!

The change in insurance is slowly getting figured out. It should be good to go early next week (I’ll actually believe it when I have the card in hand).

As far as fluid and size of my abdomen, I don’t think it’s fluid. It may seem bigger because I’m tall and too skinny. – my weight was 105 a year ago after the hospital. I am 126 now and am normally 145. (and I’m 5’10”) . So, skinny limbs and a skinny rear end with a big belly – I think you’ve described the “look” before, Ziff.

My legs/feet are not swollen at all anymore. They just are super sensitive. If anyone accidentally touches them it is like stinging needles through my foot, and it’s numb under my toes. I can sort of touch my feet, but it is with great discomfort. At night, they feel restless and sometimes there are nights where they jerk from sharp pains – keeping me up also. And, they appear slightly blackish in places like the top of my feet and my ankles– much better than 6 months ago though.

On a really happy note, I got a puppy and I am so in love! He is the second puppy since I got sober. They just make me laugh everyday! For me, they have been huge in my recovery. With sobriety and I also think with my overall health.

Eyes

Hi Eyes, glad to hear from you again. And even if you aren't better that you have a cute puppy...btw, therei s no need to tell us tales...if you feel crappy, we won't distance ourselves...we care. Email me any time..put Healing Well in the subject line so I know it is from our group.

Hugs,

Fat and happy. Alot better than skinny and sick any day. Congrats all all fronts (puppy included).


Ziff