Could use some thoughtful advise on a serious topic regarding our mortality...

[painenduser]

Could use some thoughtful advise on a serious topic regarding my mortality...

Hey guys,

As some of you know from the last time I posted in here, I am a recovering alcoholic (1yr 3 moths sober), but I am living in home which is very good for me in the sense that because I'm here I certainly can not drink, and to be honest with being on Celexa I really haven't any urges to drink no matter how bad things seem to get, however at the same time this house hold is extremely toxic for me. If you remember, I am dealing with my mother who is quickly becoming an alcoholic herself (though I think she may have been for much longer then I thought).

So anyway, the reason for this post is not so much about the toxicity in which I'm living since we already discussed that in my last post and I haven't any further update of that situation, but what I would like to discuss is me and my feelings regarding my own mortality. You see I can't recall if I mentioned this the last time however, I have been really having some odd feeling lately and I am not quite sure what to make of them. I'll give you the reader digest version of my life and my current status.

2 and a half years ago after I lost my job, I had 2 things happened that cause the "perfect storm" in regards to my health. I began drinking heavily after I lost my job, and since I had lost my job my health benefits went with it. I had been having severe pains in my sides and knew it was a kidney infection but figured I could take care of it myself, drinking lots of cranberry juice, however I am sure they don't expect you to be mixing vodka with that. Well, long story short, my kidneys began to shut down, and being drunk 24/7 I honestly was so far gone all the time I paid no attention to the fact that I wasn't going to the bathroom anymore and instead i was getting sick to my stomach. A friend of mine who knew me quite well, knew from talking to me something was really not right with me so he came to my house and dragged me to the hospital where I was in full renal shut down and while in the hospital Im not sure where due to being in an out of a hepatic coma and severe Hepatic encephalopathy because my liver had shut down due to such high amount of toxins from the renal and liver failure (my ammonia level was over 180 something, not sure what the something is or how it's measured but it was over 180). Anyway, When I was finally released from the hospital 2 months later, I came to live at my mothers place. Well I relapsed a few times in the beginning, as it was very hard for me to stop, but I eventually did and I am glad I did because I now have End Stage Liver Disease. I have Hepatocellular diseases secondary to cirrhosis. I have finally gotten all the tests I needed to get done to see where things go from here and as of right now my Dr's are telling me that I need a liver transplant. With out one, I am told I may not live much more then 2 more years from right now and if I get a transplant and all goes well, with no complications I could possibly live another 20 or so years, however thats if everything goes perfectly. This my friends is where I am having my major problems with my mortality. I certainly don't want to die, but at the same time, dying is inevitable, we are all going to die at some point, some sooner then others, some not as soon. I am scared to death about getting a transplant because the chances of rejection or some other complications relating to the transplant surgery is very high and it is something I can't prepare for if things go wrong and I die on the table or even a week or two after, however, if I don't go along with the surgery, well then I may only have about 2 or so years left of my life, but that time frame is more based on how healthily I live my life going forward, and I have some control over the outcome, meaning if I take care of myself and eat right, exercise , take all my meds, I could maybe live another 5 years, who, knows... I certainly don't and at this point in my life I sit and here everyday wondering if today is going to me my last, will I wake up? And then I think wow, I could have the transplant and as long as everything goes perfectly I could live another 20 years.. Then I start thinking do I even want to live another 20 years? What the hell would I do for the next 20 years, I have already lost everything I worked hard to get, I will never be able to work again, I will never find love again, unless its someone that just wants me since they know one foot is in the grave and the other is on a banana peel and just wants my insurance money.. Joke would be on them however since I have no life insurance. I don't even know if what I am saying right now is even making sense to anyone or am I just writing a bunch or jibberish. I guess what I am saying is that no matter how I look at it Im scared and don't know if I want to try for the surgery or not. I have control issues when it comes to myself, meaning that I have some control over when I kick the bucket it I don't have the surgery, but if I have the surgery, I can't really be in control and I can't be my stubbornness self as I am now. Infact all my Dr's keep telling me that I am pretty damn stubborn because there are already 4 times atleast now where I have been hospitalized due to my condition where they tell me I should have died and they don't know how I have survived. With a track record like that, this is where I get scared. Im stubborn enough to have avoided death on my own thus far, but what happens when Im no longer in control for instance when they go and do the transplant. And why I am scared everyday if this day will be my last... and jeesus, I still do not know if anything I am saying now makes any sense to anyone, infact, I can't really say that anything I am saying right now is making any sense to myself at the moment. Having said that I don't even know what answers I am looking for in this long winded post Im writing write now. So if anyone can understand any of this and if anyone may know how to respond, please feel free, as I think right now all I am doing right now is confusing myself. I can tell you that I am scared to death of dying yet I am ok with it. Meaning, I accept the fact that it's going to happen, and I know its going to happen well before my time and I am ok with that, what I am scared about is more of having the surgery, yet I still worry every night whether this night will be my last. So please if you can help me understand whats going on in my head (lord knows I don't) or if anyone can relate to what I am going through I would like to know if I am alone on this one.

So anyway providing whether you can understand and write back, I would truly appreciate it. Again sorry for such a confusing post. Thanks for letting me vent all this an even more so for you taking the time to read this monstrosity of a post.

Thanks

Pain

 

[herbavore]

It's not a monstrosity of a post. You are in the position of having to decide between two unknowns: without the transplant you have a short number of years left and with the transplant you might have a longer number of years left to live. Of course you are scared! In either scenario you are looking death in the face. You might be feeling even more scared because no one likes to talk about death in our culture. I have gone through the dying process with two people that I was very close to, my father and a close friend; both had terminal illnesses and knew they had a limited amount of time left to live. What I learned is that until the death is actually imminent and hospice gets involved, almost no one (doctors, nurses, friends, family, co workers) actually talks about it. So as the person dealing with this completely overwhelming experience, you are left to think about it alone. I think that it is great that you wrote about it here. Whatever you ultimately decide to do will certainly not be an easy decision.

Are you in any kind of counseling? It seems to me that contacting your local mental health services and finding out what is available might make you feel like you had a place to work some of this out. Explaining your situation right from the start might get you a counselor that has experience with life/death issues. Going through this complex range of emotions alone sounds really difficult.

One thing that I know is that before my Dad died (2 years from his terminal diagnosis) and my friend died (1 year from her diagnosis), I used to think that I wanted to have the heart-attack-in-my-sleep death. I was sure that I didn't want to know because I imagined that I would be scared and depressed and resentful in the remaining time I had left to live. After seeing what my Dad and my friend gained from actually being aware of their limited time here, I now feel like I hope that whatever is going to cause my death will give me a block of time to live with that awareness.

So, I know this isn't much of a response. I hope that you will keep posting your thoughts as you try to work things out. It's good to have conversation about all of it even if no one else can provide an answer. I think you are very courageous for wanting to express this to try to clear your thinking about it.

 

[painenduser]

Are you in any kind of counseling? It seems to me that contacting your local mental health services and finding out what is available might make you feel like you had a place to work some of this out. Explaining your situation right from the start might get you a counselor that has experience with life/death issues. Going through this complex range of emotions alone sounds really difficult.

Thanks herbavore, I appreciate you taking the time to read this and respond. It's good (but in a sad way) that I'm not alone in my thinking, however I wanted to specifically answer your question about counseling and the answer is no, I am not in any kin of counseling and that is because I have never been able to find a counselor who doesn't counsel per "the book" what ever that book is I have no clue but, I think you may understand what I mean. I don't like people to talk to me like I'm just another patient or that I'm just a few more $$ in their pocket, ooops your 15 minutes is up sorry you have to go, I know we were in the middle of a very emotional conversation and you were just starting to get comfortable talking, but I have a nother patient out side and we are cutting into their time. You know what I mean? I am not the normal mental health patient and that makes it hard for Psychologists to treat me because I know the questions they are going to ask, and I know the answers that they will give me. My mother (as well as many mental health professionals I have spoken to in all my times in rehab) have all told me that I would make a great Psychologist even though I have no official training in it because I am very much in tune with other peoples emotions, mind sets, feelings, ect. I'm one of those that knows all the right answers, but can never seem to apply them to myself. For me I often have found that things like this, the discussions like we are having now are what help me the best. Talking to people that have experienced or are experiencing the same things I am experiencing. This is why I won't go and seek help from professional Psychologists. I tend to get more from real people, that have real life experience with my issues. To be honest, if enough people respond and share with me stories such as this, what they have done to overcome ect this is what will help me the most. While I would tell people in my position to seek professional help, I know for me, it never seems to work. You guys and gals here are the ones that will help me the most. Having said that I will most certainly keep this post up to to date with my feelings and ultimately what I find that helps give me some clarification. Thanks again. This helps, or should I rather say you know this has already helped as just knowing someone (you) read this and that alone brought me to smile when I really was not in a smiling mood, but just knowing that there are people who care, care enough to read through all this and took the time to post, has put me in a better place. You can't buy therapy like this, and to me there is no better therapy then that of and from a person that can relate.

In my opinion this is the best counseling one could ask for, hence the reason I wanted to post in here, so thank you!!

 

[herbavore]

Yes, I totally know what you are talking about! I just stopped going to grief counseling myself because I found that I would go in, start crying, try to answer a few questions, get her crying, and then after we used a bunch of kleenex see her discreetly looking at her watch. I never resented that it was a limited appointment but it does feel artificial when you are really dealing with staggering emotion and you have to turn it off like that. At first I would drive down to the beach after the appointments, then I just cancelled the appointments and went to the beach!

Sometimes I think the best way to look at a counseling session is as a way to focus my attention when I am starting to mind-loop. then I take one little kernel out of the hour and use it as a starting point when I leave. But again, I hear you. BL has been way more therapeutic to me than rel life counseling lately.

I'm one of those that knows all the right answers, but can never seem to apply them to myself.

LOL--have you seen my guilt thread?

 

[Bojangles69]

Your post really humbled me to a degree I can not explain. I had to actually leave my house to have a cigarette before I could answer you.

But I think you should do everything you possibly can in your power to increase your health, get the surgery, and possibly increase your chance of survival.

I also understood 100% of what you wrote. I just can NOT tell you to sit around waiting to die. I just don't know I don't see that going well. I see you neglecting your health and having an excuse to not fight to live.

I will be honest though I do not want to write much. I want to respond again soon I just want to wait a bit to see how other people go about this. Not cause I need them to know what I feel in my heart is right. I have other things to touch on about mortality but do not want to distract the focus of the thread and turn it into a debate about that. I'd rather people talked about this more intellectually than emotionally, and just think that could elicit some irrelevant feedback.

 

[painenduser]

I also understood 100% of what you wrote. I just can NOT tell you to sit around waiting to die. I just don't know I don't see that going well. I see you neglecting your health and having an excuse to not fight to live.

I will be honest though I do not want to write much. I want to respond again soon I just want to wait a bit to see how other people go about this. Not cause I need them to know what I feel in my heart is right. I have other things to touch on about mortality but do not want to distract the focus of the thread and turn it into a debate about that. I'd rather people talked about this more intellectually than emotionally, and just think that could elicit some irrelevant feedback.

Bojangles, I think you may have misread part of my post, or I am misunderstanding yours. I am not neglecting my health nor am I giving myself an excuse not to fight to live, infact it's just the opposite. I am a fighter and thats why I am still here today, the Dr's have all told me that they on't understand how I have survived thus far, and the reason is because I am a fighter. My fear of the surgery is because then I would have no control over the outcome. If the organ gets rejected then its no longer on my terms, and maybe I would live longer had I not gone through with it. Does that make more sense? By no means do I plan to give in, thats the exact reason why I dont have a DNR, because if I code, they better beat my chest in if they have to to get my heart beating again. I was was just saying that the surgery scares me more then not having it. I mean either way it scares me and at the same time, I am ok with dying, I hope this makes sense. An as for distracting the focus, I don't think that should be an issue, thats what the mods are for, to wrangle everyone in if it gets to out of focus

 

[Bojangles69]

Bojangles, I think you may have misread part of my post, or I am misunderstanding yours. I am not neglecting my health nor am I giving myself an excuse not to fight to live, infact it's just the opposite. I am a fighter and thats why I am still here today, the Dr's have all told me that they on't understand how I have survived thus far, and the reason is because I am a fighter. My fear of the surgery is because then I would have no control over the outcome. If the organ gets rejected then its no longer on my terms, and maybe I would live longer had I not gone through with it. Does that make more sense? By no means do I plan to give in, thats the exact reason why I dont have a DNR, because if I code, they better beat my chest in if they have to to get my heart beating again. I was was just saying that the surgery scares me more then not having it. I mean either way it scares me and at the same time, I am ok with dying, I hope this makes sense. An as for distracting the focus, I don't think that should be an issue, thats what the mods are for, to wrangle everyone in if it gets to out of focus

I'm sorry maybe I'm misunderstanding a few things.

You said you were always drunk all the time and then got renal failure and your liver began to shut down right?

Was the renal failure from the drinking? Or did you just so happen to start drinking when you noticed you weren't feeling so well?
I do not understand that part of what you wrote. If you drank yourself into renal failure, that does not sound like a fighter to me. In fact it sounds like you almost had a death wish. Even now the drs are telling you if you don't get the surgery you should be dead in 2 years... and somehow you think you are a fighter for going this long w/out getting the surgery.

I have no idea how that even is. A fighter is someone who realizes if they don't go for the surgery, they will be dead with in a matter of years. And was the renal failure caused by the drinking? Because again, if you see yourself as a fighter, I'm just not seeing how on earth you see it that way.

Lets put it this way ok. I smoke. If I get cancer tommorow and a dr tells me I have 2 years left to live, I would see that as a situation I drove myself into. And in no way on earth would I view myself as a fighter because I adopted a habit so for many years that is basically killing me. I think that is the thing I am missing is you did not talk about what extent of time you were drunk for. Was it years? Or was it like a brief few weeks? Cause then maybe the renal failure had nothing to do with you're drinking, and maybe you really are a fighter. But aside from that I simply do not understand what you are saying.

 

[Mariposa]

painenduser - your post has inspired me a lot in my ongoing battle with my drinking. My health has not yet suffered, and I'm not drinking spirits but rarely. I thank you for sharing your story and as Bo said, it's not a monstrosity. I will think twice before I drink again.

I do have some more pragmatic advice for you. I'm on a timeframe, so I also will need to come back to this thread to give it in full - I'll leave it for now that if you do a search on Google for "transplant success stories" you'll likely find a bunch of people who are glad they made the decision to receive a transplant. A better life is ahead of you if you want it. I personally know three transplant 'families' - everyone's alive and well including two living donors. Since you're a fighter, I hope this resonates with you.

Back with more later. Keep your head up, we're all pulling for ya.

 

[Beachcat]

Wow, Pain,must reading your post puts a lot of things into the proper perspective. You are wrestling with an enormous decision. If I were in your shoes, I honestly do not know which way I would go.

It seems to me kind of like a quality of life issue. You could go for the transplant, but not know if you would live out the rest of your days in pain, sickness, etc. Or you could choose to do nothing and make sure to live each day to the fullest....the uncertainty of the "cure" being a true cure is a lot to have to handle.

Man, my words are just so inadequate for a situation like this. I guess I just want you to know that I am thinking about you, and I hope that you will find the answer that you need. Really, none of us is even promised tomorrow, we should all live each day as if it is our last, but that is such a hard thing to keep into perspective.

 

[painenduser]

Thanks everyone for your kind words, and believe it or not, alot of it is helping me with some of my internal struggles. Bojangles, Let me try again to see if I can make some sense out of this for you.

I am by nature and in just about every aspect of my life, a fighter. I was a long time drinker, probably about 10 years, but in that time the majority of that time was drinking like a weekender but for me it was the weekend everyday, however after I lost my job and my health insurance (I did not lose my job due to my drinking, I lost my job due to lay off's but instead of laying us off, they found a way to fire us so they did not have to give us severance pay as most of us that were let go were the people that had the most time with the company and they were selling off our business unit, so in doing so they could work the numbers to show higher profits and less expenditures) and way after that happened my drinking increased because the depression I suffer just got out of control and I drank more to cover the pain, hwoever the renal failure was not caused by the drinking, it was caused by a severe kidney infection that since I wasn't going to the Doctor for any anti0biotics and I was drinking the infection was too much for my kidneys and they shut down (hence renal failure) but since I was still drinking I was not paying attention to the fact that my kidneys had shut down until I was taken by a friend to the hospital and by that point my system was so toxic, my liver shut down. I had not even noticed that my skin turned a puke yellow color aka jaundice. They told my family I was not going to make it out of the hospital and to make arrangements for me. I refused to except that as an answers, of course, I was only able to consciously make that decision when I was out of my heptic coma which occurs when your ammonia level becomes to high and your brain literally starts to die and you start suffering from encephalopathy which arises from advanced liver cirrhosis. The cirrhosis occurred because 1. My kidneys stopped functioning allowing a back up of toxins which became exponentially worse because of the drinking. It took me another year from there to fight hard enough to stop drinking even though I knew it was going to kill me if I didn't stop. At the time I had no support system in place but myself and I was on a roller coaster of a ride between drinking and not drinking. Eventually I got to a point where I would drink less and less between each time I would get so sick I would have to be hospitalized. The last straw came for me 1 year and 3 months ago when I had been drinking for only about 4 maybe 5 days, and I called a good friend of mine who lives out in Hollywood and asked him to call my mother, I was scared because I was in pain and I was drinking and I needed to stop NOW!. He called my mother and she took me to rehab. I was in rehab for 2 days when I was in so much pain I was crying for 2 days straight. Finally the rehab sent me to the hospital and I wound up 24 hours later having my gall bladder removed, but before I got the surgery, they had to infuse me with 2 bags of plasma because my liver damage was so bad I had become anemic. After the surgery they had to transfuse me with 2 bags of blood again this was because my liver was so damaged that I want making new blood as I should have been. 2 days after being released from the hospital from the surgery, my mom rushed me back to the hospital because I was turning blue and I couldn't breathe. At that time, I thought it was the end for me. I honestly thought I was dying. I thought this was it. While I was blue and could not breathe, and was very lightheaded ect, I was comfortable because my mom was with me and if I was going to die atleast she was there with me. I was ok with the fact that I was going to die. It was the first time I had a realization that I was going to die, and that the horrendous choices I made to drink and my families history of alcoholism had finally caught up with me, and not I had to accept the fact that I was dying. I mean I was not giving up, I wanted to fight this, but apparently the alcohol had won, while some may say that I had a defeatists attitude, I certainly didn't but the way the Dr's were talking and how I felt, and believe it or not I felt at peace for the first time in my life. I had done most things in my life I had wanted to do, I fought a good fight and stopped drinking, but even though I had just had my surgery, I had guessed that my body was so beatin that the surgery and my past history had caught up to me. So anyway, as it turned out, while I was in the ER they found that I had a collapse left lung, severe pneumonia, and MRSA which is which is a Staph infection in my blood. They admitted me again, put a chest tube in my back and drained a ton of blood a fluids from my chest cavity which allowed my lung to re inflate, meanwhile they had me in isolation due to the MRSA and pneumonia and because of both of those had me on mega doses of IV antibiotics and pain meds because I was still in severe pain. I was in the hospital for another 2 weeks. They had to call in specialists from all over NJ because nothing was working to defeat the MRSA nor the pneumonia. Again though, my parents were told not to expect any miracles because with my history and the 2 infections it was doubtful that I would pull through. I had a different opinion. I made the decision that if I had beat things the last 2 times I was told and my parents were told I wasn't going to make it, I'll be damned if I would let the 3rd time be the charm and I was finally release 2 weeks after having been admitted. Since then I have had various stays in the hospital because I was still in alot of pain. We finally had found a GI doctor that has been excellent and has made me feel very comfortable however he is the Dr pushing for the transplant, he also explained to me why I am in so much pain as cirrhosis is not known to be a painful disease, however the MRI showed that I have hepatocellular disease secondary to the cirrhosis. This disease can causes serious inflammation of the liver and spleen and this is what has been causing my pain over the last year plus.

Now that I have explained all that, I hope you can see that I am a fighter, however what I am toiling with right now, and what I have been embattling with over this time is the transplant. You see in all the other times I was near death, I was fighting against it with my mind and body. I was out to prove everyone wrong about me, I was being stubborn, and in that I was proving my mother correct as she has forever told me I was stubborn from birth and was bound to do things that everyone had always told me I couldn't. (That all started from birth considering there was multiple times when I was in the womb they thought I would be a still born as they could never detect a heart beat and when they did it was faint, and I didn't move around.....that was until I was born, since there I have been forever proving people wrong about me.) Wow talk about going off on a tangent. But anyway, I am in a position of unknowns. If I have the surgery, it is no longer just me and my body I will have to fight with, it will be me, my body, and someone else's liver. I don't know what quality of life I am going to have. How much fight do I have in me to make it work and that flat out scares me. On the other hand, if I don't have the surgery, I know what I am dealing with, I know what my pain levels will be, the only unknown is for how long can my liver keep functioning in it's diminished capacity. I know as is, I should be able to make it a minimum of 2 more years, but in all likely hood providing I don't do anything foolish like relapse or anything, I could make it another 5-7 years, doing it this way I am in full control (well mostly full control) of my longevity. With someone elses liver, I do not have that control. Infact with my liver as bad as it is, just being put under anesthesia could put my liver in a terminal state. There are alot of unknowns. This is what I am toiling with. I know I stated in my earlier post that I sometimes sit and wonder if this will be my last night, and question whether or not I will wake up the next day, and this is the truth I certainly do have those times, you can't help but to think about that, living the life I do now and with all the uncertainties carries with it alot of depression and anxiety. So I guess what I am trying to say yes sure there are sometimes where I have kind of given up and had a bit of a defeatist attitude, but I think I have shown that more times then not, I am most certainly a fighter, but everyone no matter how strong of a fighter will at times feel, act, and may even become defeated, but overall in the long run, they will always try to put up an keep up the fight.

Hopefully this clears up things a little for you Bojangles, of course I may have confused you even more, I dunno, I think the best way for you to get better understanding of me was to understand my life in a little more detail. Also keep something else in min that sometimes play on my defeatist attitude, my father passed away at 33 of a brain aneurysm, Alcoholism runs through alot of the male members in my family for many generations and most if any of the men in my family on either said died around an average age of 50 of either their alcoholism, or cardiac issues. Even with all that in the back of my mind, I try my hardest to stay positive of my future, there is just alot to think about and at times it becomes quite a bit overwhelming.

Hope I have helped clear up a few things. I have never really had anyone to explain all this too, so if it seemed like alot of info, it's because you guys have made me feel welcome and comfortable to talk to you all about it. Some of you have experienced some or all of what I have to deal with on a daily basis, some haven't but can empathize. So thanks guys. An no, there is noway I would ever consider going back to AA as I never really gotten any relief from going and most of the times I have gone, I have left there wanting to and actually have relapsed. To me it's not worth it to me to go again. I much prefer dealing my issues with people here where anonymity is true, although it is your choice if you want to get to know someone here a little better.

TTFN

-Pain

 

[herbavore]

Hey, Pain, just checking in to see how you are doing?

 

[painenduser]

I'm doing pretty good today, thanks so much for asking. You know as all of us who suffer on pretty much a daily bases, we all have out ups and downs, good days and bad days, and over the last couple weeks I have just been on the down stoke, but I also know that there will be an upstroke soon, so for that I can't wait. Each day after spending some time here at blue I start to feel even better, for the simple fact that while I am here, I like to help people just as I come here looking for help and sometime just the thought that someone else had been able to take something positive from something I have written makes me feel good. There is no better feeling for me then knowing that either something that I have done and dealt with in my life or the advise I have offered has helped someone in a positive way. That's what get me through each day. Even when I'm at my worst it still brings me to a smile!

 

[herbavore]

yes, I know just what you mean. It's all we have really and it is everything but sometimes we lose sight of that. Being in a really dark place that makes us face our own mortality and the transience of everything reminds us.

 

[TheMiddleWay]

Painenduser just wanted to let you know I read your posts (hope your smiling!), although the choice is almost incomprehensible to me.

Just because you wouldn't be able to work your life can still be packed with meaning. I wish you the best of luck finding a liver if you so desire. I want to give some person one of my kidneys. Someone I, don't know, and won't meet.

Is it likely you will get one since damage was self induced? Or do they only look at your current situation? Could you get a partial transplant? Serious choices. You seem like a intuitive guy. I'm sure what choices you make will be perfect. Grasping mortality is weird.

I love Mark Twain's quote:

"I was dead for billions of years before being born, and it never caused me the slightest inconvenience."

 

[painenduser]

I want to give some person one of my kidneys. Someone I, don't know, and won't meet.

Sorry for the late response thing have been still spiraling in the wrong direction, but as they say take it one day at a time...

And the fact that you want to help someone you dont even know by donating a kidney is amazing. You must have the largest heart and such and act of selflessness. I don't know if I have the right words to say how awesome that is of you!

Is it likely you will get one since damage was self induced? Or do they only look at your current situation? Could you get a partial transplant? Serious choices. You seem like a intuitive guy. I'm sure what choices you make will be perfect. Grasping mortality is weird.

The liver disease is mostly self induced but let me explain why it's not 100% self induced, and no Im not an alcoholic who is trying to deny, or shift blame away from me and my choices, but there are extenuating circumstances that lead to this.

I was a heavy drinker for a while but not too over the top but I liked to party. There was a big lay off where I worked and rather then having to pay severance pay, they fired us instead for pretty bogus reasons. After loosing my job, I so lost my medical benefits. About a few weeks after I lost my benefits, I started getting severe pains in my kidney area and thought nothing of it, partially because I was drinking and I figured well its just an kidney infection, I'll drink lots of cranberry juice (with vodka no less) figuring that juice would rid me of the infection. As time went on my drinking got worse because I had no job, I was very depressed, and was in pain. After a few months, a friend of mine insisted I goto the hospital for the kidney problem, he didn't know I had a drinking problem at the time, and I went. That day I realized I was this horrific shade of yellow.. Yep you guessed it, Jaundice. Well after my B/A was down low enough they could start treating me I was rushed to ICU because my kidneys we failing and failing bad. This had a domino affect causing my blood to be so toxic my liver went into overload and it shut down. I recovered about 2 months later then released by the hospital as my kidneys came back 100% unremarkably and my liver didn't fair so well. This is what caused my current liver problems. So there reason I say it wasnt 100% all on me, had I dealt with the infection, my kidneys wouldnt have shut down and I probably would have stopped drinking. The lack of taking care of the infection was the straw that broke the camels back. However to clarify, I did and still do take all responsibility of my actions, and I'm certainly not pushing the problem away from me, lets face it, I was an alcoholic, and not I am a recovering alcoholic with almost one and a half years sober!

When being decided for the transplant, they do screen you and I am not sure what the qualifications are as of yet, however I have heard that 1, it could take years before a new liver becomes available for me (and by then my timer would have probably worn down) and I can't prove this, but I heard that people like me who they feel did it to themselves are put near the bottom of the list, again I dont know if its true or not.

And yes I could not agree more, grasping mortality IS weird!!

I love this MiddleWay! Mark Twain's quote:

"I was dead for billions of years before being born, and it never caused me the slightest inconvenience."[/QUOTE]

So there is my latest, nothing has changed with the exception of and this is a huge exception, my mother finally admitted to me that she has a drinking problem.. she wont yet call herself an alcoholic as I'm sure she is still a bit in denial, but the fact that she admitted to the problem meant alot to me and I have to give her credit for finally being honest about it.

Hope you all are well, Happy Thanksgiving to all those that celebrate the holiday, for those that don't its a crappy holiday anyway, so I'm chilling with the Anti-Turkey day festivities.

 

[itsok]

what are the statistics for a liver transplant success given ur individual circumstances?

i feel like if u already survive a few miracles, then if u start living right, and decide to get the transplant, if the force wants u to live, u will.

do u take silius marin (milkseed thistle)? i hear it does wonders for repairing the liver-- look it up, i swear. I have had several friends outlive a failed kidney and liver for decades longer than their prognosis.

in terms of love, dont be so glum, me and all my friends love ppl bc they are good ppl regardless of how broke they are, if they have health ailments, shitty families, massive debt. my sister married her guy. so anyway, dont be so glum, in that arena, u just have to be urself and put urself out there.

anyway, i believe in miracles, and if u keep living healthy, have a good attitude, then anything is possible. im typing this even as i entertain suicidal ideation (but i blame it on long term opiate addiction).

 

[painenduser]

Hi Itsok,

I must say out of all the people that responded to this (no offense to anyone what so ever as I do thank everyone very much for your replies) but yours for some reason, I felt something when I read it. I am not sure what "it" was, but it was a powerful feeling, something I think I have been looking for for the longest time while I have been sick. It was a good feeling, a feeling of true hope and happiness, although somewhat over shadowed by the sadness and despair towards the end of your reply. It's sad to hear that someone like yourself would be having those thoughts, but I understand because I have been doing the same thing for many years now. When I was in my worst state in my alcohol addiction, I often though well maybe tonight will be the night I don't wake up, because I am tired of the constant non-stop pain drinking gave me. Waking up sick everyday until I got that first drink.

And now, but thanks to you I may be able to get rid of those thoughts, however the thoughts I have now are somewhat different, but the end result is the same. My family life is very difficult and it's become extremely toxic and while I have not relapsed and I have been sober for 487 days (YAY ME!! Sorry needed to pat myself on my back as it's the longest I've gone sober.). I have no interest what so ever to return to that way of life, and I know I have said in the past that my family life is so bad it's liable to make me relapse, I don't think i have it in me to actually take that drink and I'm sure not going to test the waters.

I mentioned that my feelings are different from before, and thats because the full environment has changed. My life is much different then before, so different circumstances different results. What I am feeling now is more of a, well, my liver is permanently damaged and I am in end stage cirrhosis (more on that below to answer your questions). With this prognosis, I need a transplant, so I have to start asking my self some pretty tough questions. Not only tough for me to ask, but also for me to answers, and regardless of the answers, it's going to effect everyone and every thing in my circle.

The questions are lets say we get the results, and they confirm the transplant is imminent, do I go for it survive the transplant surgery, and come back to that extremely toxic environment my family has put me in? I mean and it's everyone. There are only 2 people left in my immediate family that haven't turned their back on me and that is my mother* and my asshole step-dad. or let's say the surgery goes bad and because of my condition, I bleed out, organ failure, or some other set of complications and Poof I am gone while still on the table, no warning, no chance to make arrangement, tell the ones I love good bye, mend some tattered ends and loose strings in my life, I'm too OCD to go out like that. Or lastly, I reject the surgery altogether and just let me disease run it's coarse, my family life would remain as is. I would have time to make amends, try and slowly say good bye as the time gets closer and closer to the end. With what we know now, I could have as much as 5 years left, to as little as a year, it's all about how well I can take care of myself, and the Doc's really can't be sure, there are no indicators other then the tests that they can run, but even with that they can't be sure. Infact to give an example how its impossible to tell.. My blood work for my liver, LFT's - Liver function tests, AFP - Alpha-fetoprotein blood, Ammonia levels, and all standard blood test shows that there is absolutely nothing wrong or abnormal in it, yet all scans, (CT, MRI, Ultrasound, Laparoscopy, Gastroscopy) ALL show severe signs of disease, both Cirrhosis and Hepatocellular disease secondary to the Cirrhosis, portal hypertension, I have very lowclotting abilities and finally, I hope, My immune system is compromised due to splenomegaly or enlargement of the spleen. So alot of words to say, I don't know what I want to do. I mean logically one would say get the transplant at all costs, but I don't want to come back to misery, despair, and more importantly, loneliness. Only people that have lived through or are living in this kind of predicament will be able to understand the emotional and desperate feelings this causes.

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* but sadly in the middle of all this a little twist, my mother took her first steps as an alcoholic and finally broke down and admitted to me that she has a problem with it. Step one....DONE, She is looking towards me for help and guidance St (which I know some would say that since I am an alcoholic with enough of my own problems to deal with, I should focus on me, it's OK I put my self in the position to help her since she is the one who has been with me on my side putting her own health at risk to insure I would be safe, well fed, a home to living while the bank takes mine, ect ect ect...) Step two....DONE, well almost this step is usually a permanent WIP , She has been evaluating her past errors, she is really looking deep into her mistakes and doing and she has really shocked me with some of the things she has revealed and I have a new appreciation and respect for her for doing that as there was some difficult things for her to bring out. So similar to AA, I am her surrogate sponsor. **

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** While I do not believe in AA/NA for me, and ONLY me (You go if you want to get help!), atleast not the way it is where I have attended anyway, but I will leave that for another conversation, as I have some very strong feelings about AA and people who go could get offended with my words, however, I will say this. If ANYONE reading this feels that they are an addict/alcoholic, and has not gotten help be it you don't know how to find a meeting be it AA or NA, or any addiction there are 12 step programs for just about anything here is the link List of 12-Step Programs, thinks ahhh my problem isn't worth going there, being embarrassed and to much pride to go.... I don't want to hear it, the 12 Step program has the highest success rate of all treatments combined, providing you put 100% into your sobriety. I will never advocate someone not go. Infact I encourage you to go and not do what I did to become sober and stay sober. Again, this is another topic I could go on for hours. Quickly, some examples of groups structured after the 12 step program, and one that would be great for all those here at blue that like to play with your pill meds doing god knows what and putting them god knows where, you have "PA" Pills Anonymous, then of coarse my favorite program, "SA" Sexaholics Anonymous

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Now I am very sorry Itsok, I certainly didn't mean to write you an entire book on my life, and I know I kind of expanded of the topic of conversation however, there is a lot in my head that has been eating at me to come out. Your post for some reason actually spoke to me, it was weird because I have never really had this happen before. So I took advantage of it and started replying to your post, though I let out some of the things bothering me, however trust me when I tell you there is much more stuck in my head, but I don't want this thread locked for going off topic as for me, every thing in this thread inter connects to form a much larger picture and set of issues. However let's get on to you post...

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Q:what are the statistics for a liver transplant success given ur individual circumstances?

A: To been completely honest and fair, I really don't know. It hard to understand the way they have their statistics. However, from what I can tell there is only one place in NJ, which is one of the busiest liver transplant centers in nation, the University Hospital aka University Hospital of Medicine and Dentistry of New Jersey aka UMDNJ. Lots of names I know, but since they are at the for front of technology and medicine, should I choose this route? Well this is where I would feel the most comfortable at. The down side is that there is a lot of controversy as to whether a recovering alcoholic should be allowed to have a live transplant since the damage to the liver from drinking is self induced, so would I be put on the top of the list, should I qualify for one? or do they push people like me towards the bottom? Again IDK. I know for UMDNJ you need to be sober for 1 full year, before they will even put you through the evaluation process. Plus there are other factors for acceptance, an entire page and a half worth on their website.

i feel like if u already survive a few miracles, then if u start living right, and decide to get the transplant, if the force wants u to live, u will.

Well yes I have survived quite a few miracles, and I keep asking myself why am I still here? What is keeping me safe because I don't feel I have done anything to great in life to keep me here, on top of that most people know I am agnostic, so I don't believe in something or someone that can't be proven. I'd love to be proven that there is true god, or spiritual supreme being, but there just is no proof. But thats OK, it doesn't bother me if someone else does. Perhaps we are all given an objective when you are born, and we are stuck here until that objective is complete, how the heck would I know, lol I'm just takin a guess, but we jus may never know. And you know what, it just may be that I am one stubborn bastard, well thats what people that know me call me

do u take silius marin (milkseed thistle)? i hear it does wonders for repairing the liver-- look it up, i swear. I have had several friends outlive a failed kidney and liver for decades longer than their prognosis.

I infact do take milk thistle, it helps the liver in 4 distinct ways;
a. It is a very powerful antioxidant which fights off free radicals that could harm the liver.
b. It also helps protect the liver from toxins that enter your body
c. It can also detoxify the poison from the Death Cap mushroom
d. And last but not least, If your liver is injured it can help regenerate the damaged liver cells. As most already know the liver is the only organ in the human body other then the skin that can repair damaged cells. Milk thistle stimulates the liver to generate new liver cells to replace the damaged liver cells.

The one draw back to Milk thistle is not really a problem with the milk thistle but a limitation in out own DNA, and this is the bigy problem for me. Milk thistle and the body can do all of the above, however, the cells damaged from cirrhosis are permanent and nothing can help them regenerate.

in terms of love, dont be so glum, me and all my friends love ppl bc they are good ppl regardless of how broke they are, if they have health ailments, shitty families, massive debt. my sister married her guy. so anyway, dont be so glum, in that arena, u just have to be urself and put urself out there.

That's cool. I wish I could find nice young ladies around here (central NJ) that have the same values as you and your friends. You wont find someone like that here, and I wish I could, it would get me out of my toxic environment now and then, plus it would erase this loneliness that plagues me. I miss being with someone. Hell, maybe I'm too old and too sick because I haven't dated in almost 10 years ever since my divorce. The good thing about it is we are still best friends, with no benefits (well that part would be nice lol), so if you know anyone around here who thinks as yall do, man I'd be elated!

anyway, i believe in miracles, and if u keep living healthy, have a good attitude, then anything is possible.

While I do not believe in miracle, I do believe that anything is possible, a good healthy attitude, and good positive emotions/mind there is not one thing you can't do!

im typing this even as i entertain suicidal ideation (but i blame it on long term opiate addiction).

This is a sad way to be, but not only can I relate with you on this, I can empathize how you feel. Up until I read your post I had no clue what I have been feeling over the last year or so, and now I do. I read the wiki link and wow I felt at times I was reading something written specifically for me, though it says some not all will actually make feeble attempts to do so, and almost never go through with it, but me, I would never be able to take my life like that. I guess the thing thats closest to tose feeling for me would be that contemplation of to get the transplant and live just as miserable as today for another 20 years or so, OR decline the transplant and let nature play out and see how much longer I will have with out the transplant. So if we go for option 2, then that would give me somewhere between say 6month to a year, or if I pass that I'd know I would make it another few years. Heh go figure.

Anyway itsok, your post definitely pulled me out of the glum pond, it didn't really feel that good anyway, but I'm feeling really much better now!

This whole thread has been a great thread for me. You guys are the best!!!