Cirrhosis Support Group

Well, despite knowing better for the last 12 years, here I am with cirrhosis. 48 years old, never really drank with any regularity until 40 years old, even during my time at Ohio/Alcoholic State University. Just never really took to the booze until, well I don't know why exactly. Around 40 years old just started having the occasional vodka drink or two every night. Caused no real problems for 2 or so years when consumption went up significantly (bottle a night, more on weekends). Around this time ALT & AST values crept out of normal range at Dr. visits.

Eventually figured it out and put the vodka aside...problem was I discovered wine which tasted like Gatorade to me so I was off to the races. In 2008 checked myself into rehab and all med tests/bloodwork showed normal afterwards. Not one to take a hint, started back with the wine a year later. Tipping point came in 2010 when my fantastic job of 22 years went away when our site closed. With generous severance of 1 full year of full pay and benefits I should have seen the writing on the wall...too much time on my hands and no hurry to do anything. The climax of this period ended with a 2 week binge where I ate nothing and drank nothing but wine. On April 17th I had my last drink because the next day my wife insisted on me going to hospital; she had simply had enough. When I got out 3 weeks later she told me not to come home as she could not take coming home every day not knowing if I'd be alive or dead.

Fast forward to 12/28/2011; I have not drank any alcohol sine 04/2011 but apparently the damage had been done. My ammonia levels fluctuated over the summer of 2011 and came to a head on 12/28/2011 when I began vomiting blood (esophageal varices) and was rushed to hospital. Ammonia level was 688 (yes, you read that right) and they banded the varices, put me on a ventilator and feeding tube, pumped me full of Propofol and Ativan and told my wife it would be best if she started preparing for the worst as it was unlikely I would leave the hospital alive.

I guess I had one last lucky star shining over me as after 14 days they took the vent out as I was finally able to breathe on my own. 7 days later I was released. The result, however, is that permanent damage has been done to my brave, 'ol liver. I've been scoped, ultra-sounded, MRI'd, and take a bunch pills each day. Oh yeah, they also said I now have Type II diabetes (liver related? unknown). When I went in the hospital I was bloated and looked like the Michelin man. They say they could literally smell the ammonia coming off my body.

Still unemployed, I ache every day, lost 35lbs in the hospital that I can't seem to get back, and am constantly exhausted, physically and mentally. From the monthly blood tests they tell me I am improving and my MELD score is down to 9.

Now, when I do get a new job, will I be able to get insurance or will their group plan toss me due to the cirrhosis? I am on on COBRA now (until March 2013 if need be) but what to do about insurance when that runs out. Many people have suggested SS disability to get on the Medicare/Medicaid, but I'm still functional and competent so that seems like a 'cheesy' way to go. If we do stay married and I can't get insurance my wife is rightfully concerned that it will bankrupt us if I do need a transplant sometime down the road.

I dunno, just had to regurgitate my tale somewhere.

Latest test results/meds below if anyone know how well and truly gooned I am based on those numbers. Doctors can be so evasive at times...

Thanks for listening.

Meds:

GLIMEPIRIDE 1 MG TABLET

PANTOPRAZOLE 40 MG TABLET

FOLIC ACID 1 MG TABLET

METFORMIN 500 MG TABLET

RIFAXIMIN 550 MG TABLET

FUROSEMIDE 40 MG TABLET

LACTULOSE 10 GRAM/15 ML SOLUTION

NADOLOL 40 MG TABLET

SPIRONOLACTONE 100 MG TABLET

SITAGLIPTIN 100 MG TABLET

THERAPEUTIC MULTIVITAMIN-MINERALS TABLET

THIAMINE 100 MG TABLET

Value

WBC 6.97

RBC 4.30

Hemoglobin 12.2

Hematocrit 36.6

MCV 85.1

MCH 28.4

MCHC 33.3

RDW-CV 15.7

Platelet Count 118

MPV 11.3

Neut% 52.8

Abs Neut (ANC) 3.68

Lymph% 34.9

Abs Lymph 2.43

Mono% 8.9

Abs Mono 0.62

Eosin% 2.7

Abs Eosin 0.19

Baso% 0.7

Abs Baso 0.05

Value

Protein, Total 8.6

Albumin 3.7

Calcium 9.4

Bilirubin, Total 0.7

Alkaline Phosphatase 242

AST 27

Glucose 245

BUN 15

Creatinine 0.66

Sodium 133

Potassium 3.7

Chloride 99

CO2 22

Anion Gap 12

ALT 26

Value

PT Sec 14.0

PT INR 1.3

Post edited by: BudgetPlan1, at: 03/20/2012 09:28 PM

Hey BudgetPlan1!

Welcome to the group! Nice story! (Well, not nice but informative). Your medications seem to indicate that you have seen a Hepatologist (liver specialist) and I was glad to see that you are on both rifaximin and lactulose--those are very important meds for keeping your ammonia levels down. Unfortunately, the diabetes probably came from the alcohol rather than the cirrhosis. Without the alcohol, your body may be able to regain control of your blood sugars. I would say that your chances of getting insurance thru an employer is better than if you'd tried to get it on your own, but don't know if they can slap the "pre-existing condition" clause on you. You might have to wait longer than other new hires but I think that eventually you'd get coverage. Don't know for sure so it could go either way. You'll end up in a bit of a quandry tho because if you ask in your interviews it might affect the decision to hire you.

Great job on a years worth of sobriety! Removing the cause of liver damage is the first step and is reflected in your low MELD. Like you said, your AST and ALT are elevated, indicating liver damage and the ration of AST:ALT suggests the cause of your liver problems is alcohol related. Have you checked out a program called SMART Recovery®? It is a great alternative to AA for recovery from just about any type of addiction. The online part of the program is what helps me to this day 6+ years later.

Keep up what you are doing! Alcoholic induced cirrhosis is not necessarily a death sentence. Recovery of the liver can take a long time (years sometimes) but, with treatment and alcohol abstinence, you CAN have a relatively "normal" life.

Again, welcome to the group!

Dennis

Welcome and I'm so glad you made the move to take care of that liver of yours! I send positive energy that you can stay alcohol free. As Dennis said, your liver could recover and your life can be relatively normal if you continue to take care of yourself!!

Budgetplan 1,

Group insurance plans cannot exclude you for more than 12 months for a pre-existing condition if you enroll in your employer's open enrollment period.( 18 months for late enrollment) If you had continuous health coverage prior to enrolling with your new employer's plan, they have to count that towards your elimination period. You may end up with no waiting period depending on your situation. To keep your continuous health coverage status, I would definitely continue to pay your cobra plan until you find a new job with health benefits.

Search the Healthcare Portability and Affordability Act through Google, The Dept. Of Labor has an easy to understand fact sheet explaining the provisions of the law.

You should monitor your HE closely. It can really affect your ability to think and reason. When I was searching for a new job, I had trouble keeping my train of thought during phone interviews and was rarely called for in person interviews despite my experience and training. Shortly, thereafter, I was diagnosed with HE and an ammonia level of over 400. After about six months, I had to face the fact that between my HE and extreme fatigue, I could no longer work anymore. I had dealt with with my cirrhosis for 18 years and now had become decompensated. I applied and was ultimately put on disability and last year, qualified for Medicare coverage. I am on the transplant list waiting for a new liver. Hopefully, it will come in the next year or so so I will be able to resume my career and life.

Susie

Meld 16

Thanks for the info/wishes!

Interesting year to say the least...

BudgetPlan

The others gave you good advice But I did want to pop in and say welcome

Susie is right about the insurance. You do Not have to tell your employer about your illness. However it can make it difficult when you need time off.

Hi there,

Glad you found us, stick around. I don't know anything about the insurance issue but I do hope you are feeling better, and going back to work (in my mind) would be awesome!

Congrats on your sobriety what a huge and brave step toward healing your liver!

Welcome