What should I do?

I have end stage liver failure and was a drinker for most of my life since the age of 17. In 2005 I was diagnosed with bi-polar disorder and quit drinking for a year. The psychologist who dx'd me with bi-polar noticed I didn't have any physical symptoms of going off the alcohol when leaving the hospital. I was in the rehab hospital for 3 days and nobody mentioned anything about my liver.  Even the Dr. said it was up to me whether I called myself an alcoholic or not but recommended AA.

In January of 2009 I quit drinking for the first time due to symptoms (acites) appearing. The PC doc referred me to the GI doc. He did an upper GI scan and felt my liver. He did some labs. He said I "probably have an injury" and that I need to quit drinking. So I did. But he did not get a CAT or colonoscopy. I quit felt great after few months and sought out a psychiatrist for a new medicine for my bipolar since I had stopped taking Zoloft/Lithium and I was symptomatic again. So another different psych put me Cymbalta in August or so of 2010. Not good but he said alcohol was fine but no more than a glass a day of red. Soon thereafter the drinking started again in late 2010.

As of Sept 2011, I was dx'd with ESLD. They said 10% of my liver was left and seek out a transplant after I've quit for 6 months. So now I worry about bleeding out and other symptoms due to blood thinners because I was also diagnosed with AFIB.   Last monday night I was diagnosed with bleeding hemaroids in the UCSF. The doc said it was good that I came in with the blood I had on the toilet paper but its not dangerous. Whew...

When I presented in the ER at UCSF at 1 am, I told the doc I was dizzy which is why I thought I was bleeding. He said that because I'm on Cymbalta and I am receiving a exaggerated dose of it because of how slow it leaves my system...he said my therapuetic levels could be dangerously elevated on Cymbalta and he said I can't come off unless I hospitalized.  He said the drug stays in my system 5-10 times longer so its like get a massive dose.  He quickly tried to get me a hepatology referal, but he couldn't at midnight.

So now no hospital until I find another doc this week. UCSF hepatology can't see me for at least 2 more seeks (unless I have emergency).  My condition is way too dangerous. My Bipolar is cycling hourly now...and I can't sleep or eat. I have emotiional outbursts...I swear...somebody should shoot me!

So what do I do?..I am stuck on this drug that is killing my liver while waiting to get into the hepatology clinic UCSF in two weeks...first on the list. My family practice Dr. told me that I should feel lucky to be alive and to be patient.

Hi Connie...thanks. I found out that Lilly issued a post-market "Dear Doctor" letter on Cymbalta. It said not to give the drug to someone like me. So I agree, I most likely did much damage to myself. But, that drug should have never been given to me...PERIOD, and especially since I discussed with my Dr. before he prescribed. What percentage of the blame goes to the drug and what percentage to me. Yes, I agree I need to get off but I think I've got to find a GI that understand what I'm dealing with that will lower my dose, or give me a "mood stablilizer" because this drug is pulsing through my brain at overdose level. Go to the Bi-Polar section and you will hear horror stories about coming off CNS drugs. I was told by my new cardiologist and the ER docs that I need to be brought off the drug, but I would need to be hospitalized. So I am stuck...but I will try to get another GI appointment this week here locally.


This is from WEBMD:

FDA Broadens Liver Warning for Cymbalta

Patients With Liver Disease May Risk Further Liver Damage, Says FDA

Post Edited By Moderator (hep93) : 3/6/2012 6:35:00 PM (GMT-7)

B , There is a drug called Lexapro that simulates a chemical the brain normally produces that may be of help to you , Just dont know if it works for bi-polar problem but worth a check . As Connie mentioned the alcohol is likely the cause of your current condition .
I chose to drink instead of seeking medical advice for stress and the temporary escape it provided for years . Seems you are about to hit the wall as I did a few years back , You know somethings wrong , You know what it is and you know what you have to do . I can't say your a alcoholic but given you fear of being labeled one makes one think , You went to treatment but walked out thinking you could drink anyhow ? You can't plead ignorance for thinking this supposed doctor said it's o.k for just wine . Alcoholics need not ever think any form of alcohol is o.k much less a physician treating one should encourage it , We don't know moderation .
Don't freak out but be diligent in getting off ANYTHING that is further damaging your liver . There will be things you will have to live with as a result of poor choices from your past . Foods you love may have to go bye bye , Salt is gone , Exercise will be needed . A general healthy lifestyle including your social affairs and friends , It's a strange world at first without the crutch of drugs and alcohol for someone who is not used to it . It takes time to adjust but it is what must be done if you intend to survive .
Real doctors you will be meeting hopefully soon will be very blunt about your situation and hold steadfast to there programs ( Excuses will get you nowhere in transplantation , They've heard it all ) . Be prepared and good luck to you .


A. Ziffle

"We don't know moderation."

Truer words were never spoken. Thanks, Ziffle. I came back to suggest consulting with a pharmacist BEFORE getting an RX filled. They are very knowledgeable. Also, be sure to check if a new drug you are given is compatible with others you are already taking.

Hugs,
Connie

Oh and Z, I was prescribed the drug in 2009, AFTER the docs were told not to prescribe. Whats a liver worth z? Ill take the depression vs ded liver. Now i have both. How a out a lil compassion bro. Do a google search for the fda letter.
MR B

Mr. B.

Looking for a new hepatologist?

Maybe you should think about finding one in a different state. I think I remember that California has long wait times and doesn't transplant until MELD scores are in the 30's. Some states have shorter lists and transplant in the low 20's. I know Florida is about 22!

With a patient who is less ill, further from death, the prognosis is often better.

Don't know if you have any flexibility, but it is a thought.

Carol

Z...I am venting. I am doing all the things you say...going to UCSF. I think I offended the drunks amoung us. I am one too so I am not sure why you are bothered by me holding the system accountable. I have to take care of my family so what happens happens. The system has to change. I am not mad at the profession, just the "so called" docs that make life altering drug recommedations with a couple of strokes of a pen.

Its not that simple Z. But I am working the program as they say.

Okay...going to UCSF today to get my Holter monitor off. Going to try to whack at the bushes and see if someone can get me some help.

Thanks Z!

I did an AA meeting online the other night on a chat...Maybe you could do that here?

Not all of us are here because we drank too much alcohol. I've always thought this forum was about hepatitis, all kinds, from Hep B/C, to auto immune hep and alcohol abuse.

Where is Mr. E when you need him ?



A. Ziffle

Right here - always everyday.

How can I help?

 

I dont want to write really on someone elses thread - in summary.  Hands redder, stomach bigger, no new spiders, no more tired, feel sick rarely now, heart palps of an evening is new, still off the booze 100% and enjoying it that way - a friend has even stopped booze aswell because he thinks im a hero for stopping (but he doesnt know why I stopped).  I read your threads Emma aswell - I think things are holding "steadyish" for you by the seems - i was sorry to see that banding was required though.

:/

All the best.