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Old 08-14-2010, 05:59 PM   #1
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Less than two years to live...

is what I was told back in November of 09...In September of 09 they discovered that part of my heart was missing. I was born without the right aortic valve. For 41 years I lived a normal life. The solution was to fuse my heart with a pigs heart but during the surgery i woke and began to bleed out causing them to scrap the planed surgery and complete atriple by pass. Two months later I had a heart attack and was told that i would die before the end of two years.

Along with other illnesses I have come to grips with this. It is now 9 months later..I have been off my med since March due to no insurance being turned down for disability for the the time. Basically I am waiting for the heart attack that my doctors have assured me will come that will kill me. I have already tried twice to take my own life with no success. My wife and family left me back in March and i am living with my 81 year old mother now. Im not here looking for pity or to just tell a sob story...I really just want to connect with other people who are going thru something like this.

When I try to talk about how I feel with family or friends they feel the only way to deal with it is to try to cheer me up but they don't understand that I am not depressed about this all the time. I understand what is going to happen and simply need people to try to accept that I have not given up..the suicide attempts were to try to leave less of a burden on people who can not afford to take care of me. I have a different way of looking at death now and a different way of looking at life now. I think about my last breath..I wake up wondering if this will be the last day..but I also put those things out of my mind and try to enjoy each day. But with no money or transportation or any of the things we take for granite it's hard to live outside of the walls I find myself in everyday.

So I am here to see if other feel the way I do....

 
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Old 08-15-2010, 07:31 PM   #2
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Re: Less then two years to live...

I understand completely. I broke my neck almost 4 years ago and almost died and it's taken me until now to at least think I'll live to see next summer. But when it comes to hearts, I'd like to share what happened to my uncle as he was told the same thing you were.

Uncle W. had 3 heart attacks in 48 hours. He was 42. The only reason he was still alive was that he lived just outside New York City and got the best of care. This was 1972. But even the docs in NYC said he was a dead man unless they could get him to Houston where Dr. DeBakey had started doing heart transplants. So my father and his other brother got the money together to fly the 3rd brother to Houston by air ambulance. DeBakey wouldn't do a heart transplant but another doc at another hospital thought he'd be a good subject for an experimental surgery he was doing. It was Dr. Denton Cooley and he was experimenting with bypasses. So he did a triple bypass....just like you had...and it infarcted(clotted) in the recovery room and they had to rush him back into surgery and tried it again. He survived.

But he was one sick puppy who wasn't expected to live more than a year or 2. They recommended he now relocate to California as the best heart transplant center was at UCLA Medical Center. So again the 2 older brothers got the money together to relocate him and his family from NJ to CA. The docs there had him on 26 different drugs trying to keep him alive but again, they gave him at best a year or 2 if he couldn't get a heart.

Long story short...he finally did die of another heart attack......20 years later. Never did get a transplant. He was 62.

You don't know what lies in your future. But I do know that half the battle is mental. If you don't think you'll survive, you won't.

Take it day by day and keep looking for other avenues of treatment. Anyone ever suggest a transplant for you? We have a neighbor who's been living with an LVAD(left ventricular assist device)for almost 2 years when she was told she might be able to live for 6 months with it. Her heart is healing and she may not need the transplant she is listed for. This is what they just put the former vice president on.

There are options. And your docs don't seem to be looking at them too hard. Maybe because they screwed up. So maybe you need to go looking. Start with a place like the Cleveland Clinic and see what they can do or if they can do anything. They have a system whereby you can do everything on-line.

And then just take it one day at a time.

Jenny

 
Old 08-15-2010, 10:18 PM   #3
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Re: Less then two years to live...

Thank you for replying Jenny.....a lot of ppl have told me they think the docs screwed up...they also say I have a law suit on my hands..well Im not really looking at suing anyone...the fact that I am still alive much like what your uncle went thru shows that they don't always know what they are talking about...really I am at a place in my life where I have made peace with what may happen...my problem is it is hard to find anyone who is willing to talk to me about how I feel without thinking they have to cheer me up or saying I have given up. I really havent I just accept the fact that what ever time I have left is shortened by my health. It could be years or weeks I don't know. The truth is the docs say i died the day they performed the first surgery on me...for 7 minutes I wa dead...I never saw anything, felt anything or knew about it while it happened...but that does put a different look on life along with being told you have a certain amount of time left and having my last docotr tell me I would be dead soon without treatment...lol...all of that makes me look at life differently then most..I'm not afraid of death but I also don't want to die...it's a weird place to be especially when very few people understand it.

 
Old 08-16-2010, 05:23 AM   #4
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Re: Less then two years to live...

No doctor should be telling someone that they are going to die in two years.How do they know.Do you have a tag on you that says discard after two more years??I dont think so.I could see someone tellin another that thier prognosis wasnt the greatest,but at this point we dont know-but giving you an specific time period??Not right.Fight.Focus on beating the odds.Miracles do happen sometimes.Check out different doctors.No one should be putting a time limit on life.That is not honesty,that is rude.Somewhere within there has to be health.Your heart condition sounds kind of rare,but I am sure there are different doctors who can help you.I can understand others trying to chear you up.They care about you.Reality is just that,but we really do not know what the future holds.I dont like the fact that these doctors have put a limit on your life.

 
Old 08-18-2010, 12:03 PM   #5
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Re: Less then two years to live...

Quote:
Originally Posted by leonap View Post
No doctor should be telling someone that they are going to die in two years.How do they know.Do you have a tag on you that says discard after two more years??I dont think so.I could see someone tellin another that thier prognosis wasnt the greatest,but at this point we dont know-but giving you an specific time period??Not right.Fight.Focus on beating the odds.Miracles do happen sometimes.Check out different doctors.No one should be putting a time limit on life.That is not honesty,that is rude.Somewhere within there has to be health.Your heart condition sounds kind of rare,but I am sure there are different doctors who can help you.I can understand others trying to chear you up.They care about you.Reality is just that,but we really do not know what the future holds.I dont like the fact that these doctors have put a limit on your life.
lol...not only did the surgeons tell me that, my cardiologist and primary care doc repeated it. It is rare but not un common from what I was told 1 in 500,000 can have this as a birth defect. The problem has always been detecting it. I played all kinds of sports, smoked, remained physical thru out my life with no kind of indication of trouble at all. The thing that complicates my situation is that I can not work, I'm on my 5th try for disability and I have no insurance so I can not receive treatment for anything. No meds at all. I am suppose to take plavix everyday for a year. I have not had any of my meds since March of this year. Trust me I have tried everything to get them, free clinice, free sample etc. There is no help out there for me. I was actually told I had to be either pregnant or an illegal citizen to get the help I need.

So in many ways I am just waiting around for one of two things to happen. Either another heart attack or my court date with a disability judge. In the meantime I have made peace with what I am dealing with. Again I have to say that I have NOT given up...I want to live...there are many things I want to do in life and I have not stopped living..I do as much as I can each day. But the facts remain the same. Just this week I started swelling up again which is not a good sign. In two days I have gained 20 lbs. This is something the doctors could never figure out. They thought it was due to my heart but the other signs are not there. My kidneys were fine every time they checked em. My white blood cell count remains elevated due to fighting an infection that no one can find..there are many complications that no one can figure out...the doctors at Duke want to write a paper about me cause they are baffled. I'm in pain due to spinal stenosis, Im light headed all the time due to vertigo, the diabetes is eating away at me...but I have not given up.

 
Old 09-08-2010, 09:23 AM   #6
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Re: Less than two years to live...

if the drs at duke want to write a paper on you - dont they have to have your permission? say youd be happy to do that for a years supply of the meds you need

4 years ago i was told i had a brain tumour - i had to wait 2 years for a scan to see if it grew and was told that if i had problems like going blind in the meantime lol (nice of them) to come back - well after 2 years they got the second scan and decided it was a bone tumour instead which is less life threatening - so thats good - although how you can mistake one for the other ? who knows - hmm whats my point - my point is that during that time - waiting for the 2nd scan - i started to put my affairs in order and thought a lot about death adn dieing - i dont know what happens after - but i am sorta at peace wiht it now - having worked thorough a lot of it -

this was shortly after i was attacked at work adn got PTSD - and i tried to end it after about a year cos i didnt want to end up like they said and the PTSD was kicking my butt bigtime - i did see a tunnel and then i heard the a-hole i was with calling me back lol but hey who really knows?

well im stil here - things are better most of the time - i have a friend at worjk whos baby was bprn with only 2 chambers in her heart - she has had a few ops and is due for a few more - hey said she wouldnt make it bast 6 months - shes 18 months now

my dad was given two years to live wiht his cancer he lasted 8

so as everyone is saying there is always hope

someone asked if you were on the list for a transplant? i didnt see your reply - maybe i misseed it -

wondered if you had tried writing to your local MP senator? is that what they are called over there? about the meds - it really sucks that you need meds and cant get them - that makes me so angry grrr - no -one should have to go wihtout the meds they need

write to a paper maybe? or the drug manufacturer - not that theyd prob care grrr

you sound like you are making the best of your time and i really hope you get your disability sorted - cna yuo get the meds then?

sorry lots of questions.....

im on antidepressants for the PTSD and a couple of times i couldnt afford to fil the prescription and my dr gave me some sample packets - any chance of getting some from your dr?

if you want to talk - im listening - not trying to cheer you up cos you dont sound down

just listening and exchanging ideas and feelings ok

take care

MBC
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