Male E.S.L.D

I've decided to give you all some personal experience on the subject of male ESLD , It may help answer or at the least give caregiver wives and girlfriends some insight from a mans position .

I dated my now wife for 3 years prior to my diagnosis of Alcoholic ESLD , Around six months before this disease manifested itself I proposed to her and a wedding date was set . I lived my life single for sixteen years after my divorce with my ex wife , I had grown accustomed to doing things my way and basically lived to party for all those years . I was a overhead crane technician and iron worker that afforded me the ability to maintain my lifestyle so never being in one place or " Settled down " never crossed my mind prior to meeting her . I don't know what my wife saw in me but I always thought she liked the bad boy , crazy lifestyle I had intrigued her . Opposites attract huh .

I bought a house for us and she started planning the wedding , Needless to say everything came crashing down suddenly just a few months prior to the wedding date . I went from happy go lucky hard working drunk to a almost vegetative state in days . Subsequently was told by doctors I would not likely live beyond 3 months . Acute cirrhosis and Kidney failure along with misdiagnosis of Hep. C .

My life slipped away instantly , Wedding plans in shambles , No longer able to work and a potential wolf at the the door every month with a new mortgage note in hand . Talk about a world of hurt . Never in my life have I feared anything and now I feared everything .

No need for medical details of the next 3 months or beyond because that's not really what this post is about . This is about something called the male ego and what I feel most guys face when going from what we perceive as being a protector , Provider , Friend and lover . What I know happened to me dredging through years of mental torture inflicted upon myself and to a lesser extent my now wife . Hopefully it will allow you a inside glimpse into what this disease effects beyond the physically obvious .

This will be broken down into parts due to other obligations I have to fulfill today . This is the first part .


A. Ziffle

Life's normal problems or the drama that is life doesn't stop just because your dieing .

After coming home with a doctors death sentence from the hospital my fiance and I had a talk about our future plans or lack there of . I thought it best to cancel the wedding and dissolve our relationship instead of dragging her through the misery of watching me die . In short order she refused to hear anything of the nature and that response didn't sit well with me , In the end she won the discussion with setting the wedding date back a couple months . I have never showed vulnerability to anyone and over the course of the months leading up to the wedding I found myself immersed in it , Being weak means people have the opportunity to take advantage of you and that was learned early on in my life . Doubts of my wife's being able to handle the situation ahead , Why would she put herself through this ? Was she going to leave me eventually and take me for everything I had if things got bad with my health ? I shoved those feeling down as best I could and decided what will be will be and we married .

My wife has two children from her ex and I have a grown daughter with my ex who resides in another state . My wife and her ex have had problems bickering about anything under the sun and the fact he is there father assures him to be a thorn in her rear for a long time . I Never had a problem with him until I got deathly ill , He jumped on the opportunity to step up his aggravating ways at this time .

More frustration piled on also from the constant bombardment of doctor visits back and forth weekly , My wife had just started a new job one year prior and quickly lost any ability of taking me back and forth to hospitals . I never asked anybody for anything my whole life and now I have to beg and bum rides to get to appointments . Just another notch among many humiliating aspects . I had been taking lactulose to try and control my high ammonia levels and hoped it would curb my anxiety along with a prescription I was given , The Lactulose and pills probably kept me from killing myself but they both carry very bad side effects : Lactulose gives you uncontrollable diarrhea ( Which my wife had the unfortunate job of cleaning up after ) and the anxiety meds caused impotence . So the feeling of further uselessness mounted . Going to the grocery store brought about stares from adults and children the like , My weight dropped so much and the ascites filling my abdomen gave me the appearance of a pregnant skeleton .

Hopefully your beginning to see what happens when one is confronted with this disease in a male perspective . Let me make it clear that this is not a platform for pity , but a call to understanding some of the mental reasoning in behind the diseased patient and it's ability to alter ones way of thinking be it from ammonia , stress or both . This is part 2 so there will be more to come on this .


A. Ziffle

thanks..look forward to next installment
Angie1953

Ziff, independence and never asking anyone for anything is not just a male thing, but true also of strong women like myself. Only 3 times in my life have I ever asked for anything (not including my requests for help on the forum when I'm not available.) All 3 times I was denied. Very humiliating. So it was extremely difficult for me to ask for rides prior to and after my transplant. I found one very giving neighbor who would take me to Mayo's lab for blood work 3 x a week for a long period of time...then twice a week, etc. She would also take me there for scans, etc. A couple of times she wasn't available and I had to swallow my pride and ask someone else. Unless they had their own business to attend to, I never heard a "no." This was a new experience. Even so, I hate to ask anyone for anything.

I also had to "retire" on Disability income 4 years before full retirement age. My work was a huge part of who I was. I'd been working since my teens. It's one of the reasons I agreed to becoming a moderator on this forum. I can't just sit around doing nothing. And I'm limited physically in what I can do.

Just wanted others to know that some of these feelings are not gender based and also apply to some women.

Hugs,
Connie

Next installment begins .

My mind was shuffling in thousands of directions uncontrollably and all with negative connotations . Although my mind slipped in and out my ears and eyes picked up on things real and imagined . Attempting to sort out the real and imagined became incomprehensible , I just fell deeper into depression and all the more isolated . I had nobody to talk to and life consisted of laying on the couch in pain or go to the hospital for another variation of pain . All theses things bottled up inside me I took out on my wife when she would arrive home from work . For her , Work was how she lived at that time . She left in the morning to work at a office and came home at night to work on getting me better and clean up my messes . I knew this but still was unappreciative of it and was more inclined to sit on my pity pot . This eventually became tiresome for her and I was already on edge looking for a reason to push her away , I had enough of everything and was wanting to quit my marriage , The medical program and just die .

I considered going back to drinking but had about 5 months sobriety and 3 months of which was on the record at the transplant center . One afternoon when a neighbor couldn't take me to a appointment I called a old friend from work , He lived about 1-1/2 hours from me but said he wouldn't mind giving me a hand . We drove to the appointment and he and I spoke in depth on what had transpired with my help and life , I hadn't seen him in a few months and enjoyed the conversation . He had became a minister since I left my old work location and had some free time to give me a hand with transportation and company . This became a turning point in my situation , All the people I worked with and knew as friends were avoiding me like I had the black death . Conversations about Religion , Politics , life and general b.s eased alot of tensions in my life . He didn't take on the role of a minister but resumed the role of friend that I knew before his seminary .

The desire to drink diminished and slowly my health started improving aside from the ascites problem but I hit a road block with missing one appointment for therapy ( Part of my 6 month pre-transplant requirement ) . It felt like someone kicked me below the belt when the hepatologist told me I had to start the program over again . Again another mental set back that almost sent me back to the bottle . I may have just went back to drinking but my wife and friend intervened before I did . They knew it all was building up and cornered me again . Yes , I had to start all over again but they convinced me not to give in . In short nine months of sobriety passed and approval for transplant to go forward but it wasn't easy . I still suffered from the ascites being removed weekly and high ammonia levels and as this post clearly states the never ending onslaught of personal issues .

I will be finishing up this post later with some thoughts and what I learned from my experience in dealing with this disease hopefully in a bit ( Gotta go eat , My miss piggy just got home ) .


A. Ziffle

Ziff, don't know if you ever knew, but your minister friend e-mailed me telling me about you. I think you had just joined the forum. He said you needed support, so I took a special interest in you. And now, as I've said before, you have become a success story and a role model for many others.

Hugs,
Connie

Yep Connie , I knew he had came here looking for answers to questions he had about my diagnosis . I believe he found HW while doing research earlier for a member of his congregation and saw the Hep. thread . Weird how things just fall into place sometimes .

A. Ziffle

" If you ain't part of the solution then you are the problem "

How does one overcome the challenges of predicament I faced ? . I don't like people feeling sorry for me , But you learn very quickly as I wrote earlier that it's hard to fully grasp the turmoil going on inside the head of someone with so many problems unless you experience it for yourself . So I learned to not get so defensive when others tried to sympathize , Particularly when they had no clue of the crap that I was going through . Not always but usually people that genuinely sympathize care deeply about you . That might be obvious to some folks but wasn't to me .

Laying around due to lack of energy and moderate pain was compounding the depression issue . I tried reading books but my mind couldn't focus or comprehend anything beyond a paragraph , I tried cleaning the house but the cleaning solutions made me nauseous and seemed to make the liver spots on my hands ( Besides my wife would just go back over what I cleaned anyhow ) , I tried gardening and found it to be a bit demanding and not real easy on a bloated stomach picking out weeds . Finally I decided to work on the interior of the house and tackling a complete bathroom renovation , I thought it would take a month to complete . It took 3 months of me crawling around the bathroom floor and sitting on a bucket when I got tired ( We have two bathrooms so don't get in a tizzy ) . It looked great and inspired me to get of the couch and do more . Note : My doctors would have had a fit if they knew I did this , and subsequently the umbilical hernia I had mysteriously showed up during the work . Being busy or keeping yourself occupied was and is the best medicine I found to ward off depression .

Friends , Hmmm a bitter sweet word . I never bothered to make many friends in my life , I been hung out to dry many times by so called friends that the notion of having more than a couple is a setup for a big let down . Finding true friends is essential and keeping it to bare minimum worked for me . My pastor friend , My wife and my online friends here at healing well proved to be the support that I needed . Namely Connie and P.G listened to my rantings and provided the proper feedback I needed for overcoming the hurdles I faced ahead . Finding like minded people or at the least someone who has proven experience in fighting a devastating disease like this was and is a life saver . I started going to church with my wife , Something I rarely did before . I'm not the churchy type but the feeling of belonging to something was great . Involving myself in speaking to the youth on the hazards of alcohol and drugs , Getting involved with elderly folks within my neighborhood by cleaning their yards or fixing minor odds and ends made me feel better and made the community grow a little closer . Remember busy hands are happy hands .

Gotta go to bed but will finish this up in the morning I reckon .


A. Ziffle

Thanks so much for sharing this with us.. I have read parts before as you have shared... I think you are right that the male perspective is so important. Thank you is all I can say for taking the time to share..

Thank you!!

Sandia

Picking up where we left off last night .

Finding hobbies is another solution , There is so much a person can do without going overboard . Connie mentioned one recently when she mentioned her position as moderator here , Practically everyone has the use of the internet now days and it's a great tool for joining in something that can be done from the house . I myself enjoy art and hadn't picked up a pen since I was a kid , No it's not anything you would want to display but it does serve it's purpose in keeping me busy when I feel too tired to do anything else . Be it golf , Hunting , Fishing or just tinkering around you are certain to find relief from something that you love to do . Getting over the hurdle of getting off the couch requires the ability to sample each avenue to find what suits you best .

Alcohol and other recreational related stuff if it applies . While AA has been the gold standard of success for most to overcome a addiction it is certainly not the only route . I live in a small town and it has two AA meeting places , I gave the one closer to me a shot and found it to be full of court ordered drunks and a few of which I partied with before becoming sober . This clearly wasn't a good idea in my case . I knew my life depended on staying sober so finding something that isolated from me from my past while still providing sense of comradeship was tough . I found church was a pleasant medium for this need . It's not for everyone of course and for me I'm a bit inclined to believe the organized church has more dastardly folks than it has good ones , Just my opinion based on what I see and seen . You don't go for the people you go for the message and sense of community and overcoming that was a whole other story . In the end I believe groups like AA , Religion or what ever are crucial in providing the proper footing for staying sober . If for nothing else just to get you past the initial year or years till you can learn your weak spots and how to avoid them .

Getting off your high horse and a sense of humility was a problem for me , As mentioned earlier I have a strong sense of pride and my accomplishments have never been the result of something I had been given . I worked hard , I lived by my own rules , I fell down many times in my life and crawled back up if for no other reason than to spite others who I perceived to enjoy my fall . I'm sure even the most timid or insecure people have at one point have had to pick themselves up by the boot straps to get back on their feet at least once in there lives , Else they wouldn't be here today . This does not mean that humility is beyond you , It took awhile for that one to sink in . I have eaten more crow since this disease than the average person eats in a life span . Admitting defeat is not equivalent to losing the war , It's more akin to losing the battle . Toning down pride , arrogance and ego are a acquired taste but absolutely imperative to success in recovering from a position I have been in for years now .

Learning to live in the day , That phrase gets tossed around here quite often and it likely does in every forum here at HW ( Not just the Hep. people ) . You truly have no other choice than to live by that creed , Otherwise any possibility of another day tomorrow is lost . Notice I said " day " , Your future sick or not doesn't consist of more than the matter of seconds if that . This is compounded when you are diagnosed as terminal . When someone ask me what are you going to do Friday night my mind automatically starts to giggle " It's Monday !!! Are you seriously asking me that far in the future " ? Being a working drone all ones life we are programed to think of nothing else but the weekend , I found out just how bass ackwards society had become when this disease took it's toll . Looking back on my life I see alot of truly inexcusable moments and opportunities I missed to stop and smell the roses along the way . Now all I have is roses and not enough people to give them to . Breathe , Marvel at life and this worlds beauty and it's sorrow for this very moment is all you are certain of . I close this read with this thought .

Should you have questions or like me to elaborate just feel free to ask as always .


A. Ziffle

" Dying is easy; living is tough " No truer words have been said . As for me being tough I'm more inclined to think it's stupidity or just plane crazy . Daddy always said " Son if you gonna be stupid you better be tough " or the ever popular " Hard heads makes for soft arses " .


A. Ziffle

 Thank you so much for your posts Ziffle,

 It was very informative and it opened my mind to how my husband might be feeling.  Sometimes he has a rough time expressing how he really feels.  I just think it's wonderful you decided to open up and let us see things from your point of view.... I love this forum...It has been so helpful to me and my family.

Thanks again,

Have a great weekend,

DDMom  

Kathy and Dennis 

Mr. Ziffle,
Another thank you for this post. All of your posts have been so very helpful to me over the last two years since Dougie got his cirrhosis dx. In addition to me, you have certainly helped the many others that read and post on this forum.

Connie,
I totally agree with you regarding counting your blessings. I have been actively practicing that for the last 5 years. I share this with my best friend of the last 40 years...she lives 2500 miles from me, and we are only able to see each other every few years or so...she and I exchange a daily email that starts with, "I am thankful..." Somedays it is as basic as a warm bed to sleep in, or that the previous day ended! We have both been through some difficult and challenging and heartaching times with our hubbies, kids, parents, etc...just life! And the daily exercise in being thankful for at least one thing has been really wonderful for both of us.

Emma