Cirrhosis Support Group

Don't mind me - just venting about all this.

So I had my second endoscopy on 2/20 to band my esophageal varices due to alcoholic cirrhosis (bleeding the first time, not the second). I was exhausted afterward and never really regained my strength. A couple days later, I was at an AA meeting in a hospital (thank god) and I started shaking violently, I couldn't talk besides mumbling a few words, I couldn't form sentences, I couldn't walk or hold on to anything. Some AA members took me in a wheelchair to the ER on site and they admitted me and said I was in septic shock. My BP was super low - 50/28 but then bouncing up to 80/63 and then back down, my resp rate was low, but once I had a couple BMs (with help of course) and my ammonia level started going down, I could talk and respond to the doctors and nurses. But my BP was still really low - they didn't understand how I wasn't in a coma. I was there for a week (got out the day before my 38th bday) and saw every infectious disease doc on site. They wouldn't say for sure that I got the infection from the endoscopy but what else could it have been? I'm still on IV antibiotics through a PICC line in my arm. At least they took out the central line. I'm sick of this! I've only been diagnosed with cirrhosis since January of this year and I've been to the hospital 3 times. Grrr. They said I'm lucky I didn't have to go on a vent because I came in when I did. I wish I could go back and kick myself when I was 25 or 30 and say STOP DRINKING YOU IDIOT. Like I would listen to me.

But I did fall in love with a boy recently. He's in recovery too but it won't work because of treatment facility rules, blah, blah, blah. Of course I pick the ones out of reach.

VENT!

Calicatt

I'm sorry , I know how frustrating this can be.

It's non uncommon to have very frequent hospitalizations in the beginning.Many of us were near death and had to go through similar problems.

Once you have a more regular routine with your Liver Dr things should settle down a bit.

Usually they'll check for the varices and ascites every 6 months or so (Once things are under control.)

Infections are harder for us to fight because Liver Disease weaken the immune system.

Hang in there, Liver disease is a long road. as long as you remain alcohol free things should settle down. Stomp your feet and scream if needed But know we're here for you.

First let me extend a belated welcome to the group! Don't forget that we also have a pretty fair website at www.MySickLiver.weebly.com where you'll find lots of information about alcoholic liver disease (ALD). Also, feel free to PM any member here if you have something you would like to discuss privately.

I am so sorry you are going thru so much suffering at this stage of your disease! I had ALD as well and had most all of the symptoms and complications that are possible with the exception of banding as my varices never manifested after I started treatment. I had 2 or 3 abnormal bleeds but was still too involved with alcohol to do anything about it.

I too know how you feel about going back in time and yelling at yourself! "If only...", "I should have..." and "I wish I had..." are so much a part of the normal vernacular when we first stop drinking because we realize what we have done to ourselves. Let me tell you tho, that 5+ years later, and post liver transplant, I don't let any of that lingering guilt/anger/all negative emotions get in the way with living life every day to the best of my current abilities! The fact is, you cannot change the past and you don't know what the future will bring, so concentrate on what you CAN do and what you DO know today.

I am glad that AA is working for you, especially in light of the problems that you had at that meeting! Did you know there is also an Alcoholism Support Group here on MDJ? It is really focused on the AA methods and feels very much like an online version of an AA meeting. Personally, I had so many issues with my drinking and my way of thinking that AA didn't help me to beat my addiction. I used SMART Recovery®, which has a great online program that I "worked" by myself. I get my "refresher" thru an offline (ie face-to-face) SMART meetings that I mentor at my transplant center for folks waiting for a transplant who have had alcohol problems in the past. Some of the folks work both programs! I always tell people it doesn't matter how or what you use to get sober and break addiction habits--just do it! Congrats on making the break!!!

Now, looking forward, set your mind to working on your health. Only you can make the decision to do everything you can to regain your health! All your doctors, friends and family are "tools" to use on the road to physical recovery. Learn as much as you can about ALD and cirrhosis. Keep an eye on getting healthy enough so that, if your doctors tell you that you need a "new" liver, you are healthy enough to get one and have a long, healthy life afterwards.

Please keep coming back here whenever you have any questions!

Dennis

Oh, I forgot I wanted to talk about your Sepsis as well. Forgive me, I started a long post to you yesterday but lost it overnight. (Even with all my tech background I do stupid things like not saving my work! ).

I can't really say that it was the EGD that caused your infection, maybe yes, maybe no. Unfortunately with your weakened immune system (caused by your cirrhosis), a hospital can be a really bad place to be, not because they don't keep it clean enough, just that, well, its where sick people go after all. They try their best to keep it clean and sterile there but germs just don't want to follow any rules.

In the year or so after I quit drinking, cirrhosis decided to really get its revenge on me (or, more likely, I was then sober enough to realize what was going on). I had my year in h$ll being in and out of the hospital and rehab facilities (my HE had gotten so bad I forgot how to walk). Somewhere along the way I picked up e Coli which formed a pretty good sized abscess in my back. I had a central line, a PICC line AND a drain tube in my back. When I got out of the hospital I still had the PICC line and the drain, which my middle "child" (he's a now 30 year old "retired" US Marine) flushed the PICC lines and administered "hand grenades" of antibiotics. He also had to empty and measure the drain contents and put a fresh dressing on the drain site. All of this was on a daily basis for several weeks before the infection was cleared.

I look back on it as just one more bump in the road, but at the time it was pretty scary! Needless to say, I don't linger on what could have caused the problem! You'll get stabilized over time and that is what to keep in mind as you go thru treatment.

Sorry for being so long, sometimes I get carried away and remember more of my own story!

Post edited by: dmanflan, at: 03/12/2012 09:02 AM