Lost Son's Updates on Dad with Hep C, Part III

LS, Glad you posted again. Being retired takes some work. Especially for folks who didn't have hobbies outside of work, as their work or business was their total focus. My Dad was ill for several years after he retired with Congestive Heart Failure and had no real energy. He did however do a lot of volunteerism in his community. He had been a magazine editor and free lance writer all his life, but also was pretty artistic. He: Maintained the painted heads of the bass drums for the high school "Warriors" marching band. He: Helped the church nursery school win the 4th of July FLOAT contest every year. He: Helped two of my brothers friends start a company, doing all the print advertising and brochures. He: organized an sculpture contest in his town and worked with the library to have an annual show at the community library. He: helped all the cub scouts in our neighborhood build their pinewood derby racers as he had a full workshop in the garage.. He: learned how to do plumbing and electrical work and became the go to handyman in our neighborhood...several of the folks were widows, he was a widowER...so he was quite popular. But you have to get out there...do things...trim the bushes, volunteer places, fix the shed. Dad had to rest a lot, but when they found out he could do stuff, he was the bell of the ball!

Also, about AA a bit. Mike was reluctant...and only went because they "made him" in order to get on a list. However, he changed during that time. From a guy who was "just" a daily drinker, not a drunk, not like those OTHER AA guys (HA!), he came to know he was exactly like those other guys. The drink was ruining his life. Sure, he didn't get 17 DUIs and break up any bars, but he was one of those lucky few for whom alcohol was POISON. And it was ruining his life....he was facing death after all. He became the poster boy for the younger guys of what not to do...especially the ones who were drugging also!

At first he felt that he didnt deserve a liver, that young folks with liver disease they didn't cause themselves were more worthy and he deserved to die. That began to change. He began to want to live. He began to want a liver transplant. He became the guy who would do ANYTHING to get a liver translant. It was amazing to watch a guy who could not tie his shoes, who often didn't make it to the rest room, begin to change that much.

It sounds to me like your Dad is changing in many ways too.

I'm sorry he has had to actually compeltely retire from the manufacturing world. I hope he makes the transition to new opportunities gracefully over time.

Hugs,
Mama Lama

So true. I like this side of the statistics much better. I have stopped all google research as well because it was making me seriously depressed.

I had dinner with my folks tonight which was a great time. Salmon and salad for my pops which he actually loves anyways. He always loved lettuce, tomatoes and onions and would literally eat it everyday! I remember growing up he would add all 3 to every meal.

Anywho, as we are eating I found out something I didn't know before which I feel contributes to a lot of the fear. When I was 11 years old I lost my uncle (husband of my dads sister) who I was really close with. He lived a block away and was at my house daily as he worked with my dad. At the time I didn't know much as an 11 year old didnt (Well then anyways) all I knew is "he got sick and passed away"

I'll never forget the day...he came to our house and handed my mom the keys to the shop and said that there was no way he could work anymore. The look on his face was terrible. I remember my mom later saying it looked like he knew...sure enough the next day he was rushed to the hospital after he was coughing up a lot of blood...he died hours later that night. while he was still conscience he begged to see my dad as he had to tell him something. My dad showed up 40 minutes late...he never did get over that.

I do remember my parents talking and saying "it was so sad seeing him that way and he was yellow" After he passed I remember that was my very first real close loss where at 11 I cried. As time goes by you just stop asking questions as you try to move on.

Well here we are 2 decades later and I finally heard it all. My uncle died of liver disease. His liver was shot and who knows for how long. I was not sure if he knew...or had symptoms that he just ignored til it was literally the day he was to die. It turns out he knew and stopped drinking but it was way too late...Literally weeks.

Although he was a good person (I actually respected him and he treated me more like a nephew than my blood uncles) everyone knows the reason he died and sadly unless you had the honor of knowing him on a close level, his legacy is that of a drinker...that drank himself to death.

So basically my dad knowing he has the same thing feels death is inevitable and soon. He says he feels bad that he will be seen as that guy that drank himself to death...he hates that that is his legacy and he feels terrible his kids and wife have to hear it.

I told him that none of us think that nor is that his legacy. He then looked down at his plate, took a bite and said, you really think I can get a transplant? I said the longer you can stay as healthy as possible the better the chances...

I guess anytime you go through a transplant or even just get better and a second chance, you see things differently and use it to make your mark so to speak. I was reading of people who get new livers and then drink again!! That is nuts and sad to me.

On another note, I had a question on how you all approached letting family and friends know about the disease or if you even did.

I ask because we had an awkward moment yesterday. As I was visiting my parents some more distant relatives showed up for a surprise visit. They hadn't seen my parents in over a year as they live out of state. Well they showed up with a case of beer and a bottle...the guy handed it to my dad and said I got you a gift, do the honors. My parents just kind of held their breath and my dad finally joked that he couldn't because he was on a strong medication. So he still didnt tell them the situation. I guess he wont if he doesnt need to.

My dad handed me the bottle and beer before I left. I threw it in the basement.

I agree with the sentiment but for someone in the depths of illness and struggling to stay positive the stigma is unneeded. You get better tell them what you want to. The overwhelming majority look upon ALD as if you got it because you deserved it. The shame one does to themselves once they see the ere of there way is enough without ridicule from others. I was treated like dirt initially by the medical community due to the cause of the disease. The inescapable fact is that others who don't know you or your intentions will judge you. I say limit the damage initially by just letting the doctors and yourself beat the crap outta you.

In a perfect world we would all hold hands, Sing "Imagine" and eat less pork. It ain't happening.




Ziff

Deb, "He who laughs last laughs longest". I say this literally and not to just to achieve the last word. There was a time not long ago I also let my intolerance for others intolerance get my goat. In the end it's all about doing what we have to, to stay alive. I've heard people tell me I have too much pride and it has cheated me from various things in life. Looking back they were right. It took surrendering my pride at hospital appointments and to people I love to actually make me see this.

Said it before and say it again. For all the pain and sorrow this disease has given me it has also brought me so many wonderful things. Things I always had but never stopped to look at until I almost lost everything. Now I laugh at my detractors. I'm still standing, I may drop dead in a minute but I overcame the naysayers odds and will laugh till they chunk my carcass in the ground from this point on. After all that's all that really matters right? Staying alive and being able to smile. You have a great sense of humor obviously, You've made it this far.



Ziff

Some people just don't get it. I don't know how you pulled that off without wigging out. Apparently they haven't a clue as to how advanced you are in knowledge about this disease and oblivious to your efforts in supporting him. I know they are family but you just can't cure stupid. Just be glad you didn't get any genes from that pool.

Wow, Dads up and kickin butt huh? I'll take that over funeral plans any day. Sooooooo Hope ya don't mind me askin but what kinda delicacy did he bring over (Sorry haven't had breakfast yet). Is he doing his counseling thing for the program?



Ziff

Hi Lost,
Sometimes you have to change the subject on the negative sorts. When someone starts that with me, in the middle of their well meaning conversation, I do this: "Oh, oh...sorry to interrupt, but before I forget I wanted to ask you about (their child, husband, dog ;) Family!! I hope your Dad is getting the alcohol classes behind him for transplant listing. This disease can go South in a heartbeat, as you know too well. Dinner sounds lovely. Big Hugs

Absolutely I know all too well things can go south quick but I try not to think that. My main focus is getting him listed. Actually I got a call from his transplant coordinator today saying that they are going to let him know today that all he needs to do is get started and after he hits 35 hours, they will list him.

So now I need to push. He is barely at his second visit yesterday. So a bit to go.

Lostson,

I see that shifting the day from high to LOW was very difficult emotionally.

But, in a bit of defense of the family...they see your Dad's been pretty sick. And they have some relative who succumbed pretty quickly to similar symptoms...so they may be worried about YOU, that you will be so very upset if something goes south quickly, that they wanted to be assured that you could handle it...if if if.

AND, you and your Dad have been through an evolution here...from both of you thinking the end was near and there was no hope...to getting going on a program, eating better, taking the right meds, and him actually thinking more positively and feeling better enough to do some cooking for his son who loves him like crazy.

His family does not know about the evolution of his feelings and attitude. And they know about closing up the business. And if I understand correctly,no one has filled his family in on some of the facts:

He has liver disease.
Some folks are bastically allergic to alcohol and get cirrhosis (many drinkers do NOT -- it is in the genes).
He is one of the folks at risk and it has done a job on his liver.
He didn't want to talk about it or think about options.
You both have learned a lot about liver disease.
He is now getting world class help.
He is going to a program required by the TP folks.
He may get listed and there is some chance he has more time than he or you thought...like Ziff...years and years maybe.
And he may get a transplant if one is ultimately needed.

These folks don't know because he has chosen not to tell them.

So I'm sorry they upset you. But I can see how they may be thinking, too...worried about YOU.

And you have certainly been worried...and now you are fighting back...helping your dad go to program, go to the docs, take the right meds, get evaluated.

And you know in your heart this is a race some folks lose. But so long as there is a chance, and with him feeling good, I would be really really optimistic.

Hugs,
Carol

LS,

I was 100% certain I would lose Mike in 2010 and 2011. We fought and fought.

And now it is now. With Hep C, Alcoholic Cirrhosis, and Heptocellular Carcinoma he was really really sick...kidney failure, bad heart and a bum liver.

And YEARS later he is playing golf and taking grandkids to Disneyworld.

Who would have thought it.

And LOTS of our member have good outcomes...lots.

Hugs,
Carol

Well said LS.


Ziff

I hope for special consideration and understanding in your dads case with getting on the list quicker. Not easy thing to have your soul or misdeeds bared to others but again, Who is really important as far as your dads thinking should be. There will always be nosy, busy body or overly inquisitive people. The norm is to brush them off but when your weak and vulnerable that type of thing bothers us more.

I got married to a woman I dated for 3 years prior to my sickness. We had the date scheduled for fall of the year I fell ill. Never seen it coming (ESLD) and I immediately canceled the plans. Wife says that I planned it that way to thwart getting married. I wound up being the skeleton (looking) groom needless to say. I remember telling Connie back then that " Should I die during the wedding my folks could save a lot by burying me in the same suit". Look here man. Cold feet is cold feet so don't confuse it with genuine concern. I had both. If this gal is truly the one, you may only get one chance. If she is unable to assist you in every aspect of life (including dad) then run!!!!

The last paragraph concludes my weekly "Dear Piggy" (Dear Abby) response for the week. Any further responses of this nature will be handled by our female members. My personal quota for touchy, feely has been met. Back to being a boar



Ziff

Trying to post comment in car on trip home from tp clinic. More on that later.

I've had the impression that your father was a daily drinker. I never had the impressioni he was hooting it up and getting fight s in bars.

Many many folks are daily drinkers who have enjoyed lots of adult beverages.

But the fact is this: some % of drinkers get cirrhosis. Some who drink very little who are in this % get very sick too.

Call it bad genes tho I don't know what the explanation is.

Bad luck it is.

So look at it like diabetes. He cant drink because he is essentially allergic to it as the diabetic would be to a diet of pie. And because of its addictive nature a program exists to help folks get off the thing that is bad for them.

It could be a 12 program for diabetics to cut out candy bars Or a group meeting for folks allergic bee stings.

Quitting alcohol us hard and the liver tp folks can't take a chance acne with limited donors.

I feel so bad that he judges himself so harshly.

And I feel bad about your personal dilemma, which is outside our scope.

BTW. I agree with Ziff...if she isn't into sickness and in health, for richer or poorer, she isn't the one.

I think your dad would die happy (if it happened) if he knew you were settled, almost settled, soon to be settled. Any way..if he knew you were happy. A wedding day party can be modest given the famity situation. And let come what may.


Your soon to be partner needs to be up for whatever. It could be you sick down the line and she'd have to be the kind of person you are, one to go the extra mile if she were going to be THE one for your life. Communication is the key to a good marriage. Get communicating.

Hugs

Carol


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