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Posted 1/9/2015 10:16 PM (GMT 0)
Hello, I will assume you are reading this because you or a loved one is suspected, or has E.S.L.D due to alcoholism. First let me say my heart goes out to you and your loved ones.

I was diagnosed in 2007 with Hep C by a internal medicine doctor. The symptoms that caused me to seek medical help involved : Swollen feet/legs, Extreme nausea, Lethargic feeling, Dark urine. It all transpired in a matter of days. I worked heavy construction and awoke one morning to find my feet wouldn't fit into my work boots. My fiance at the time worked for a local physician and had stayed over that weekend. She requested that I go see one of her doctors but I refused. The following day the swelling had gotten worse and seemed to be traveling up to my abdomen.

That evening I got a call from the doctors office. “Get to the ER now!!”. Fiance helped me out of car as I could barely walk and listless. about 4 days later I woke up in patient at hospital. Couldn't remember how I got there much less what year it was. My liver and kidneys had shut down completely. My family had been called in from outta state and was by my side. The conditions in the local hospital was deplorable to them and I was subsequently moved to another hospital 45 minutes away. A well known GI in the area began treating me while I was in the ICU recovering.

A month rolled by and my condition somewhat improved with lactulose (for encephalopathy) and diuretics (reduce edema/ascites). I still couldn't remember anything that had occurred short term but I was still alive. Ascites had built up in my abdomen to the point where it had to be removed manually. Diuretics not working. The doctors came to my room to discuss the situation and informed me I had 3 months at best to “get my life in order” (Will and personal affairs). Very rarely does someone bounce back from this. I could stay and be treated further in their care or go home. I signed the paperwork and went home to die. Good news was I didn't die. Bad news was I wanted to. The pain was constant.

They drained 9-16 liters of fluid out of my abdomen every 2 weeks initially, My body weight weight plummeted but my abdomen got enormous. Eyes and cheeks drawn back into skull. Thin as a rail. Eyes yellowed along with skin. Constant nose bleeds, unable to eat, testicles swollen so bad I couldn't walk.
This continued on for the next 2 months. Yipee!!! I'm alive huh. Then the fluid in the abdomen dramatically increased volume. I began having paracentesis done 2 times a week, removing 8-10 liters per visit. I had begged the GI I was seeing to refer me to a hepatologist but he assured me he could get the fluid under control with diuretics.

Fiance and I set up a appointment with the transplant clinic at UNC Chapel Hill NC. Roughly 4 hours away. I was accepted for treatment there under the condition of the contract for sobriety requirements. Six months sobriety verified before any serious treatment began. Had I known this to start with I would have had nearly completed the sobriety requirement at the time of the visit to UNC, Something the GI never mentioned. The months ticked away and I hung on to life by a thread till 5 months into sobriety. Then a hernia due to the mass volume of fluid build up decided to almost ruptured. I was rushed to ER and they could not get the hernia to subside or push it back in without surgery. Mind you UNC had told me under no circumstances was anyone to touch me surgically without direct consultation with my doctor there.

My doctor at UNC was paged and I waited in excruciating pain for 3 hours before the ER docs said a decision had to be made now. I signed the paperwork and surgery began to repair my kinked intestine before it ruptured. UNC doc called while I was in surgery. I was released 2 days later and the routine went on as usual with paracentesis, diuretics, doctor visits and oh yes, Therapy sessions for my alcohol addiction. Yes I had out lived my odds but the journey still went on. In the mean time I found this support group here through a old friend who stumbled onto it while looking up info for me. I read other folks stories and eventually joined. After the sobriety requirements had been met and my pre-transplant evaluation I was given a option to have TIPS surgery. TIPS is a shunt that basically creates a bypass that should relieve the ascites issues I had been experiencing. TIPS is frequently done in cases like mine and carries pretty massive risk. A 50/50 chance of dying during surgery and a possible increase in encephalopathy. Honestly I had come to the conclusion along time ago when this started that death was the least of my problems. I accepted and the surgery was done 2 weeks later.

There will be a part two I will write and add to this post. Please do not respond to this post until I finish with the second part. I am doing this post to keep from having to do this each time someone needs help.

Thanks
Ziff
Posted 1/10/2015 12:00 AM (GMT 0)
This is the second half of my story.

After the TIPS was done I spent 3 days in UNC recovering then went back home. The fluid did not immediately dissipate as expected. It took another month or so for me to notice it was going down and in the mean time no paracentesis was done at UNCs request. Eventually the fluid dissipated and came to a complete halt. I still have to stay on top of the encephalopathy to this day but have not seen a increase in it. I continued as I have to this day with Lactulose, Xifaxin, and vitamin supplement. I still have sleep reversal and feel lethargic at times. I'm back to original weight for my stature.

I eat a healthy low and no salt diet. No red meat at all. Haven't touched a drop of alcohol since diagnosed in 2007. I exercise by doing yard work around the house and personal projects, Keep busy. My wife and I as mentioned earlier watch out for signs of encephalopathy but you get used to staying on top of those things after what we been through. It's a minimal price to pay to still be alive. The lactulose is not the best tasting stuff in the world and the side effects or intended reaction from it is often inconvenient (diarrhea) , but hey, again, I'm alive and this is a 100 percent improvement from the Hell I've been through.

I got married to that fiance in the midst of all this. I managed to maintain my company insurance policy for the first year while I was sickest. I managed to keep my house I had just bought 1 year prior to diagnosis. I applied for disability during the first few weeks after leaving the hospital and received it. My medicare benefits as well. Life for me /us has forever changed. All for the good in the most part. No, We aren't as well off financially as we were when I was working 70 hours a week. We adjusted and made things work. A life of heavy alcohol and drug abuse while working my fingers to the bone has taken it's toll. I'm a hard headed sort. Good natured but easily riled. Never went to the docs for anything prior to this mess. Ironically I see at least one a month now. Believe it or not even my getting riled up has changed a little. I can't change other folks or lead them to where they wont go. Something I'm still working on within myself.

Life is whatever you make of it. It can be painful but doesn't have to be a torture chamber. I find more often than not over the years since this all happened that practicing alcoholics have to hit a brick wall before they change for good. I certainly knew something was wrong long before the crap hit the fan. People gave subtle hints about skin color, Constant smell of alcohol and so on. I didn't listen. My family pleaded. I didn't listen. My fiance beat arounf the bush about the shear volume of alcohol I was consuming and didn't ever appear to be drunk. I laughed it off. I stopped laughing when I almost died. It took me to the edge of death to save my life. Ponder on that a minute. To all the drunks who say it wont happen to me. To all the loved ones who surround them. Denial wont make the problem go away. Caregivers can only do what the title implies. You can't change someone who doesn't see a problem. To drunks, Alcoholics or druggies. Ask yourself how far you want to push your luck. Take it from me. If you want to die there are other avenues less painful.

Life's issues will go on long after you become sober. In fact they will increase by your perception. Alcohol has served as your crutch when the world broke your leg. It was the dark sunglasses that covered your eyes when anguish and sadness demanded tears from your eyes. You will be exposed to all these things once the addiction is gone. You have to weather the storm and there will be no harbor. Once you have the skills to get over the initial shock of things it will become easier until it is a distant memory. You will likely always feel the urge to crawl inside your addiction and hide but trust me, it will go away. I wish you all the best in your struggles and thank you for your time to allow me to share this with you.

Ziff
Posted 1/10/2015 12:51 AM (GMT 0)
Wow God Bless you sir. I wish you the very best.

Kathleen
Posted 1/10/2015 4:30 PM (GMT 0)
Your story is powerful and offers such hope, Ziff. You are always helping others who struggle with liver disease... and those who care for them while they are not well enough to care for themselves. I appreciate your experience more than you can know. Big Hugs
Posted 1/10/2015 4:42 PM (GMT 0)
Ziff. Thank you for the powerful testimony.
It's gives me strength.
I need all I can get.
Posted 1/10/2015 6:34 PM (GMT 0)
Ziff...you show strength and humility in sharing your journey...compassion and commitment.

I will keep the url to this post handy to refer to new posters with ALD diagnoses...and especially to the loved ones of those with Alcoholic Liver Disease who find their spouse/parent/sibling unable or unwilling to make the changes needed to CHOOSE LIFE soon enough.

You are so right...we who love you cannot change you...not with nagging, threats, or outrage. We can leave you, but that is hard when you someone. A person can only change himself/herself or how he/she responds to a situation. I pray others can heed the warnings and not need to be in a coma, or threatened with the dreaded...."put your affairs in order, you have 30 (60, 90....) days, tops..." conversation.

You know that we received just that message at our house....and thank goodness HE finally decided.

HE decided. Not me, not the kids. HE decided. September 27, 2010...not that I remember the exact day too precisely.

Hugs and thanks,

Mama Lama
Posted 1/10/2015 8:40 PM (GMT 0)
Your quite welcome all. There is one thing that must occur before a doctor even touches you, as any survivor knows. The will to try. Not one foot, but both feet firmly planted into getting it done. It's heartbreaking seeing so many try half heartedly while others struggle so much only to parish at the hands of liver disease. Watching loved ones or caregivers dragged through the depths of hell on earth. Yes Carol, Turning away from loved ones is a difficult situation to consider much less do. Threats or walking out may serve no purpose at all if your gonna whip yourself daily for that decision. Just as the addicted person reaches his last encounter before they quit. I do hope the caregiver has the "Straw that broke the camels back".

Someone said the definition of insanity is repeatedly doing the same mistakes and expecting the outcome to change. Something has to change internally for both the caregiver and the afflicted or nothing changes. Marriages often dissolve after sobriety is introduced. The dynamics of the relationship change. We adapt to what we see is needed. Years of babysitting a addicted person creates a person who in most cases fills in the gaps of irresponsibility. They sometimes become accustomed to that position. Throw in a new found sobriety to the significant other and their role has diminished. As Connie's mantra put it. A quote from Alice in Wonderland~"But that was yesterday and thats not who I am today". Something like that anyhow.

Actually the idea to save this thread was what I was gonna suggest. I am also keeping a file to use again should this come back up. You ladies are doing a fine job here on the forum. You to David....... Should you need me you know where I'm at. I'll check in and visit from time to time.


Ziff
Posted 1/11/2015 2:23 AM (GMT 0)
I tried to post this earlier, but it wouldn't work.

Thank you Ziff. People dealing with ALD need to hear from someone like you. My liver was trashed by Hep C, so I don't have the wherewithal to give the same advice.

Other than that, our experiences with HE and a bum liver are much alike.
Posted 1/11/2015 4:06 PM (GMT 0)
Thank you for sharing your story ziff .You have helped me in many ways. Your sternness And your ways of making us laugh. I wish you the best.
Hugs Dorothy
Posted 1/11/2015 4:34 PM (GMT 0)
Nice post Ziff - I know we havent been buddies - but still.

For your ref - it was the man himself who said as near to it... "the definition of insanity is repeatedly doing the same mistakes and expecting the outcome to change."

Albert Einstein.

Posted 1/11/2015 9:08 PM (GMT 0)
“I have a lot of acquaintances, a few are buddies”
― Toba Beta


Ziff
Posted 1/11/2015 11:50 PM (GMT 0)
Ziff,

I am looking forward to reading part 2 of your story. Thank you for posting. I relate from an adult child of alcoholic parents perspective. You may have read my conversations with themiz and Mama Lama. Both of them have already helped me tremendously. I love this site.

Hugs,
Hef (2 worried)
Posted 1/12/2015 12:08 AM (GMT 0)
"No good deed goes unpunished."

and now in Latin...
Posted 1/12/2015 3:13 AM (GMT 0)
Yes, Unfortunately David that quote seems to be more the norm here than anywhere. Particularly when addiction is the topic.

2W, Neither of my parents were alcoholics. Mom never drank and dad was a lite weight drinker (social). My grands on both sides and others in extended family were alcoholics. Oh yeah, The second part was the last long post I wrote. Thought I added that at the top first lines. Anyhow, My parents both came from abusive backgrounds but did a fine job of raising 3 boys themselves. We were sheltered from most of the families intentionally. Can't say that hurt or helped but curiosity certainly was a issue. I only saw my moms dad 3 times in my life each time a drunken hell-raiser. My fathers dad I seen maybe 5 times and he was a nasty old codger. Both married multiple times so tons of aunts and uncles and all generally trash.

I've never mentioned this but one of my uncles who lived near by died at age 43 from ALD. That's actually how I got started drinking at a early age. My brother, cousin and myself would swipe his liquor when he passed out drunk. That went on for years until he much like myself eventually swelled up and died. I remember mom telling dad that aunt May was bringing him liquor into the hospital before he passed. Strange I always remember thinking that uncle Cliff was a wimp and a loser for letting alcohol run his life. That'll never happen to me. Right??? My parents are die hard Christian and raised us in that religion. My younger and older brothers smoothly breezed their way through school and life. Me not so much. I went to juvenile hall when I was 16 and graduated school there shortly after I was 17 then released. Didn't stay home for long and was out working and making my own way beyond that. I was a rebellious little devil.

My perspective on my extended family has always remained the same pretty much as my immediate family. I can't change nor would I attempt to change any of them. My daughter developed a drug habit (she's 25) I beat my self silly for years trying to figure out where I went wrong with her. Well.... A short list is: Money does not equal love. Worked all those years to provide her with every material thing a girl could want, but I was no daddy. The summers I spent with her was actually spent with me working and her sitting at home waiting for me to get home. I got home late and exhausted and all I wanted to do was drink. I missed the one thing she needed most. Me.

It didn't take me long to come to that conclusion, Heck, I knew it all along deep down inside. You weigh out the options at the moment and do what you thinks best. Sometimes it's wrong, It was. Fear of being locked up and losing everything if the checks didn't keep rolling in to the ex was a powerful decision maker. I couldn't afford to stop, Have a long term relationship with a lady was out of the question. No woman wants a man gone for a month or more at a time on jobs. I fueled up on drugs and alcohol to avoid feeling the hurt that was going on inside. " I've screwed up my child's life and I have no life". All that was changing over the last few years prior to my diagnosis. I was determined to get that white picket fence, wife and a dog. Re-establish my relationship with my daughter. It was going great and things were coming together. At least on the surface. Out of the blue my liver shuts down and the rest is history.

Sorry if this was a bit long but hopefully it will expand your mind on why and how these thing snowball. Nobody has a perfect manual for raising their children. My own parents were Ward and June Cleaver. Sometimes for what ever reason people take the wrong roads. Hell some folks just shouldn't have children at all. Maybe that was me. Don't know. I love children, Animals and old people. I'm over qualified in love and maybe that's why I hid in the addiction. I don't know, At this moment I don't care. It's done. All I or we can do is move forward or wallow in self pity for the past transgressions. I say again, Life is far to precious to trifle away on matters that get you nowhere.


Ziff
Posted 1/12/2015 4:02 AM (GMT 0)
It's amazing how smart you get if you live long enough.
Posted 1/12/2015 5:13 AM (GMT 0)
I've met people with college degrees that have trouble lacing their shoes. Point well taken though. Intelligence obviously has very little to do with how much money you dumped into getting a fancy title. Give me a idiot with tenacity over a rocket scientist with arrogance any day. Ah yes time, It does have a way of weeding out sub par intelligence....... or perhaps it should be tenacity.
Any whooooo it's time for your favorite piggy to go to bed.


Ziff
Posted 1/12/2015 5:16 PM (GMT 0)
Ziff,

Thank you for sharing your story. You have helped me and Dougie so so much. And smile. Always wishing you the best.

Hugs,
Emma
Posted 1/12/2015 9:41 PM (GMT 0)
Hello Emma, I often think of you and Dougie. I keep up with your post regardless of not always replying. I don't think there's a time when I've logged on here I don't think about you guys. I just don't want to harp about Doug. That being said, I see he's trying again and that's wonderful. Your still sticking to Alanon like glue and I respect that. Tell Doug I'm still rooting for him but I wont bite my tongue when he misbehaves wink. Jeez I wish he would get his footing, He's got so much going for him. Wait!!!! Did I say I wasn't gonna harp? Till next time. Thanks and take care of yourselves.


Ziff
Posted 1/13/2015 1:36 AM (GMT 0)
Ziff, please accept my apologies for sounding a little confused when I wrote a reply to you yesterday. It's b/c I was confused!

I'm brand new here and when I read your first story I neglected to look at the date you had written it. I'm a work in progress when it comes to where to go to find my replies, post a new topic, how to reply correctly, etc.

Having said all that, I shall read your second part of the story...a few days late and a few dollars short.

Hugs,
2W
Posted 1/13/2015 2:00 AM (GMT 0)
Ziff, First of all, thank you for sharing your story. Everything you have worked so very hard to do to get better are exactly what I've been wishing for my parents to do. Even today, after both almost dying during the past 6 months, they continue to not show a will to thrive. It makes me so sad. They're both dying.

I wish you could sit them both down and tell them your story. Give them advice on how to become involved in their health issues and fight for their lives. Ask them why are they continuing to commit a slow suicide.

Unfortunately, it's too late. Near death happened. First my mom, then 4 months later, my dad. I won't get to far into their stories, but I will one day. It would help me, I think.

I've shared my concerns about my dad on here. It helped me get through last week.

I'm still learning "one day at a time"

You're such a wonderful person who sounds accepting of what life throws us. Actually, I think you talked about that.

I shall stop now. So tired.

Mama Lama,

You and Mike continue to be in my thoughts and prayers. I found your entries today (accomplishment for me) and read them.

Hugs to both of you,
2W
Posted 1/14/2015 11:04 PM (GMT 0)
Thank you Ziff. I appreciate your kind words and thoughts.

Things are good today and the last half of 2014 was really good. Dougie has been attending AA and safe guarding his sobriety and health. As I mentioned before, I know that every day is a gift. Good health is a precious gift. And know that all things can change in an instant.

Also as mentioned, I am still going to Al Anon. I am working on taking care of myself first. It is hard to change lifelong habits, and I am trying and learning every day.

Hugs,
Emma
Posted 1/19/2015 3:05 AM (GMT 0)
Ziff,

To me, you have been the ultimate inspiration. You gave me so much hope when I found this site. Two years ago, I had come out of a similar situation - fuzzy headed, an ALD/cirrhosis dx on my first hospital stay, and not a whole lot of direction on this liver disease thing when I got out. I love that you lay it all out there for everyone. It reminds me of meetings that I go to - "If you want what we have..." :)

That's it though! I wanted to live, and I knew that if you were alive and doing pretty well after the _____ that you went through, I could probably do it too. I wanted what you had.. I just had to go the lengths to get it.

I'm really really glad that you documented your story. It helped me, gave me hope, and it will for others too.

Thank you,
Eyes
Posted 1/19/2015 1:17 PM (GMT 0)
Eyes, You've come along way. Keep walking the road your on and help others when you can. Thanks for the comments.

Ziff
Posted 1/19/2015 1:56 PM (GMT 0)
I have been following this forum for years.  My husband got HEP C from a blood transfusion at a very young age.  I followed many people with there ups and downs.  This forum answered alot of questions for me and therefore I could communicate better with the doctors, asking the proper questions.  I think the doctors were amazed at what I knew and understood about everything that was happening to my husband.  I wanted to thank everyone here for being honest with their opinions.  Ziff, you have such a wonderful way of saying things and I love your sense of humour.  My husband passed away last year, someday I will fill in the blanks, but today just wanted to say a huge thank you to everyone (especially Ziff).
Posted 1/19/2015 2:41 PM (GMT 0)
Well, jj, this is a hard way to meet and greet a new member....and we are so very sorry to hear that your hubby passed last year. We are also glad to hear that our forum was a comfort to you during your family's sad journey with liver disease. Come back often, you would have much to offer....both from HIS experience, and yours. Family members are desperate for information AND inspiration. A little late, but many virtual (((((HUGS))))) to you. Mama Lama
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