What to do when the DR says "You're gonna die most likely"

[Eosin the Red]

Yep, the title says it all.

Nov of 2003, right as I started working on my little thread on publishing stuff here at ENWorld - I had this funny little deal happen and my heart stopped beating twice, back-to-back (Pulseless Vtac) but as Monte Python would say "I got Better."

So, this fancy heart DR says - "You have this disease and you are gonna die in 3-5 years but we can't really prove that until we go to surgery where we STOP your heart." Now, I am a registered nurse and I work mainly in ICU/CCU and the ER so this is pretty much no joke crap. Too much information is a baaaaad thing. However, I play things her way and spend 16 hours with tubes rammed into my heart only to get the "Well, you are all clean. We are gonna watch you for a year and the if nothing happens call it a freak of nature."

One year goes by - nothing happens other than me paying the friggin insane hospital bill. In Febuary I go back for my "heart birthday." The appointment is fine, I look over the tests and see nothing wrong. She looks over the tests, does an examine and says "Something is wrong."

Yucky. I don't like those words.

Bad thing is that she can pinpoint exactly what is wrong so I get the "We are gonna run more tests in July. There is a brand new test that will help us figure it out."

Fastforward to last week at my regular DRs office. He says "Hmmm, there is a test I would like to do but nobody has the machine." Remember the part about me being a nurse - well, I pipe up and say "I know where I can get that done as long as you don't need it charged through the hospital system." I should have stopped right there.

So, I bring the results back (BioZ or external Swangantz for those of us medical geeks). Guess what, I have CHF at 37. Not so bad.... Not good but workible. Hold on a minute, I say to myself didn't they get all these values when they were in my heart just 15 months ago? And they were all normal ....... Doctor says "We are gonna need to run some more tests but that stuff that we suspected as being the culprit in Noveber of last year may be responsible."

So, here I am once more. 37 years old, married, two boys (Davie 2 and Connor 4), physically fit (6'7" and 250 lbs) stronger than an ox and the doctor thinks it is possible that I won't see either of my boys 10th birthday. The first time it was nightmarish but I kept all together this time it just seems so much less likely that I am gonna "dodge the bullet" so to speak.

What do you do?
This crappy day ends with several problems, what and when do I tell my wife and mother?
How do I make sure that my boys "know me." Do you write letters? Maybe you start a blog and suck out the good parts that mom can give them?

 

[diaglo]

yup. get your things in order.

like a will. like love letters to your wife, kids, mom, etc...

and live each day like it is your last. for as long as it lasts.

 

[Gruns]

For what it's worth...

I'm a strong believer in the power of the human mind. You, being a nurse, have surely seen the effects of this. Now don't get me wrong: I'm not saying to completely forgo medical attention and what it has to offer. Just saying that once you give up hope, the downward spiral begins. Remember: Just because you weren't 100% aware of this condition until the recent test results were revealed, you've had this condition for xx years so far, but it wasn't your primary focus. Ignorance is bliss and all that. Acknowledge it(whatever it is), but don't dwell on it.
I was diagnosed with Hodgkin's disease at the age of 18. Now I had heard the term before, but had no idea that it was cancer. (Back in the old days, we didn't have the internet to look this stuff up!) Luckily, I was too young and naive to understand my own mortality, and thus, was invincible in my mind. After a year or so of radiation and assorted drugs, I was given a clean bill of health. I often wonder what would have happened had I known that I had cancer. The term brings with it a sense of dread and hopelessness, and would have most definately affected my attitude, and thus my recovery.
Anyway, all I'm saying is don't underestimate the power of positive thinking. Conversely, don't underestimate the effect of negative thoughts as well. I firmly believe one can beat just about anything, so long as the desire is there. The hard part is keeping the desire strong when the chips are down. By their nature, athletes are very competitive. They don't like to lose. I look there for inspiration. Now I don't expect you to go out and win 5 Tour de Frances or anything, but there's something to be said about a "can do" attitude...
Later!
Gruns

 

[Harmon]

First thing- make up your mind- "Am I going to live or am I going to die?" Which will it be?

My Dad was told in October of '93- you have ALS, in three years you will be completely paralized or dead, there are no other possiblities.

Eight years later they tested him again, because the Doctor's thought they had made an error (can't happen- a Doctor make a mistake). Well maybe he doesn't have ALS, after all if he had ALS then he would be in the above situation. He flat out refused to be in that condition and fought to get out of it, you can too.

Make the choice- be there when your boys are getting married.

 

[Hand of Evil]

You go on. Yes, you get things in order. Yes, you live everyday to the best of your ability. But you don't worry about tomorrow.

 

[Henry]

Eosin, I have never been in that situation, so all I can say is:

1) I'm sincerely sorry to hear the news. I don't know you personally, but I've seen you around the community a lot in the past.
2) Diaglo and Hand of Evil's advice is the same advice I'd give, along with a huge plate of Harmon's optimism. Despite all that's happened, you are your most important cheerleader. Without you, your family can't help you in any way. But definitely tell them, too - hiding it makes it worse, always in my experience.

 

[DungeonmasterCal]

Well, as you sent prayers to my son, I'll send them back for you. Get your affairs in order, tell your family as soon as possible, make sure your wife and kids will be provided for, and if you believe in a higher power make your peace. Then, throw yourself a tequila bender, sober up, and live every moment to the fullest. (And keeping a sense of humor does wonders).

 

[Ankh-Morpork Guard]

My mother has been in a similar situation for the last...oohh, I guess its been four years now.

Her liver is pretty much dead, and that's only one of a large amount of problems. Four years ago when everything 'started', she was told she had six months to live at most. Like I said, four years ago. She pulled out of it, got a whole hell of a lot healthier than should have been possible to the point that the doctors are still shocked.

Sure, she isn't perfect, and is going to have to have another operation. After what I watched her pull out of while I was in High School, I've gotten to the point of believing that anything is possible. By all accounts, she should be dead. How she isn't is completely beyond anyone.

Things happen. Its probably a good idea to get your things in order and such, but you're still here NOW and you shouldn't ever waste that.

 

[der_kluge]

That's tough. I just don't know how I would handle such a situation, but I'm an optimist. I'm inclined to believe that 5 years from now you're going to post a follow-up thread stating that it was all a big misunderstanding, and nothing ever came of it.

If you are concerned, however, you could always get one of those little camcorders, and just videotape the hell out of yourself. That would give your sons something to watch later on.

diaglo is spot on about the will, too.

 

[Henry]

...diaglo is spot on about the will, too.

I don't want to turn this political in any way shape or form, but given the recent events in the news, you might at the same time think about a living will, too.