Bad news guys. Just got back my cardiologist

R

Ryujin

Airship Passenger
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Aug 3, 2007
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Well i will give u guys some history.

When i was 2 years old i had a Flu Which attacked my heart. I was in the Hospital for 2 weeks on alot of machines to save my life. fast forward to 1992 i was 8 years old playing around with my mom. We were running and playing, To my moms dismay i collapsed like 100 bricks on the floor. She came running and called 911. I finally wake up and see that i am in the hospital. i was doing test after test.

After all the test were done 2/3 doctors told my mom and I that he will not live past 18. He has Cardiomyopathy.

For people who don't know what it is here is the text from the AHA

The heart cavity is enlarged and stretched (cardiac dilation). The heart is weak and doesn't pump normally, and most patients develop congestive heart failure. Abnormal heart rhythms called arrhythmias and disturbances in the heart's electrical conduction also may occur.

Blood flows more slowly through an enlarged heart, so blood clots easily form. A blood clot that forms in an artery or the heart is called a thrombus. A clot that breaks free, circulates in the bloodstream and blocks a small blood vessel is called an embolus.

* Clots that stick to the inner lining of the heart are called mural thrombi.
* If the clot breaks off the right ventricle (pumping chamber), it can be carried into the pulmonary circulation in the lung, forming pulmonary emboli.
* Blood clots that form in the heart's left side may be dislodged and carried into the body's circulation to form cerebral emboli in the brain, renal emboli in the kidney, peripheral emboli or even coronary artery emboli.


Well back to back to my story. As soon as i turned 19 i had a muscle Spasm with my heart ( just like a heart attack) when the Paramedics came my heart rate was 240 per min ( i was sleeping and it woke me up). Of what the doctors tell me is that the heart overloaded per say. after about 2 weeks of test my heart was working at 58%

About 1 year later i had another attack. I was driving home from a movie and i had it while driving. I almost crashed on the way home.

back to the doctors with test agin for 1 month, my heart is working at 48%.


well about a week ago i went to the doctors and had all the test again and my heart is at 41% right now. The doctor told me Your life will not be as long as it should if u had a healthy heart.
 
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This is sad news. All I can offer you outside of sympathy is to embrace your life and enjoy it, for at this point, you really don't know how long your heart will hold out. Be strong and rest assured that you will be remembered by family and loved ones.
 
Thank you..

i am only 23 years old so i am not giving up any time soon
 
I am very sorry to hear that. It is indeed very sad news =/
 
Sharpe said:
Best attitude to have. I know many people who have been given X amount of time to live and have gone on to live normal length lives (70+ etc).
Click to expand...

Stephen Hawking is the ultimate example of this right now, heh.
 
Ryu, I was diagnosed with Atrioventricular Nodal Re-entry Tachycardia when I was 19. I'd had it since I was born, and nobody detected it fully until then. Every doctor I'd been to since I was 8 said it was just a heart murmur, and that's exactly what it sounded like, until I was able to record an episode.

The general idea sounds exactly like what you went through at age 19, down to the 240bpm. Mine would occur frequently, sometimes lasting seconds, but more often lasting minutes or hours. Very tiring stuff, when your heart feels like it's beating out of your chest.

My cardiologist recommended me to have an Electrophysiology Study, which I was apprehensive of at first. The idea of me having heart surgery so young terrified me, and I sought the counsel of a few family members and some of my friends. All assisted me with the decision to go ahead and have it done. It was the surgeon's words who finally led me to say "OK" though. He let me know that while AVNRT is normally *not* life-threatening, it is life-altering, especially if left untreated.


I had the procedure done and my secondary sinus node was cauterized/destroyed, leaving me with a normally operating heart. Good end to what could have been a very difficult life.

It's been six years since my surgery, and I haven't had a relapse yet, and God willing, I never will (odds are about .05% of reoccurrence).

The only scare I had was a year ago when I got Pericarditis. Ironically, I got this condition after having a very serious flu which ended up attacking my heart membranes.

Let me know if you need to talk about any of it, I sure as heck would have enjoyed hearing from other people who had similar conditions when I was going through it.

Much love to ya :)

-Tristam
 
Has your doctor mentioned the possibility of a heart transplant? Seems to me that the type of cardiomyopathy you have it treatable with a heart transplant. You're young, and I'm assuming healthy aside from the heart problems, you should be a good candidate for transplant. It can give you a good number of years you otherwise wouldn't have; years with a lot more mobility and activity than you currently have.
 
thats a pretty bad hand you were dealt =/

im hope you do get better but live a good life either way <3
 
the doctor says when my heart goes down to 25% i can get a doners list. Which is very stupid, it can take years to get offered a heart.
 
Oh man thats really bad news =(

Its ridiculous about the donor wait too.

I really don't know what to say.
 
the way i see it life is short. I try my hardest to enjoy life.

with sports i cant play almost all of them, if i get hit hard enough in the chest i will die ( my heart in enlarged and my ribs are not strong enough to protect my heart)

i do Snowboard and travel alot. Its my passion.


as a joke when people say how are you doing i say " well my heart is beating if it stops i will let you know"
 
Ryujin said:
the way i see it life is short. I try my hardest to enjoy life.
Click to expand...

im not trying to be stupid here, or corny, but i've been dealing with a recent breakup that im just now learning to cope with, and if i could have that outlook on life instead of moping and dwelling over some little girl who broke my heart i would be in business

cherish that because as much as i know that it doesnt pay to dwell on the past and regret anything that i coulda have done to change it, i cant help myself sometimes
 
the way i think is


" life is like a card game, u never know what u will get dealt but you need to play with what you have"
 
Theres no way to make your heart stronger? Like steroids or exercise? You mentioned that the heart cavity itself was enlarged, but do you also mean the heart itself? What about blood thinners to make it so that clotting becomes less of a factor. I know theres a drug thats pretty much a low dosage of rat poison (yes, rat poison) that is used for people that have a high risk of thrombi/embuli.
 
Don't be too disheartened about the transplant thing; unless you've got rare blood type/blood markers you'll probably take less time than you'd think getting a donor heart once you get onto the list. Being young and (otherwise) healthy with good habits will put you pretty much to the top of the list once you do get on there. There's been a lot more awareness about organ donation in recent years, and although things still aren't ideal the wait time is shorter than it used to be.

One of my husband's college friends was diagnosed a few years ago with a genetic liver disease (Wilson's, for you medically minded); it only took him maybe 3 weeks from being put on the donor list for them to get a suitable transplant.
 
I think a lot of people could learn a valuable lesson from you Ryu. I'm loving your positive and outgoing attitude, despite your situation.
 
Don't give up Ryu and everyone at Katsu is there for you man!
 
Great attitude to have, Ryu. Aren't there any resources for privately soliciting a heart donor? Making you wait until 25% seems to me like they're making you take unnecessary risk. What if you don't find a donor in time?

Why can't they start the search now?
 
Private solicitation for organs is so, so illegal. The organ donor list is set up in such a manner that only people who absolutely guaranteed will die in a very short time without the transplant can be put onto it. In addition there's a panel who review each case to make sure they meet strict guidelines before they're put on.

I know it seems sorta unfair from the perspective of someone who's heart is operating at 40% to not be allowed the possibility of donation. But think about all the people out there who already are on the list, who spend their days doing nothing but sitting on life support, counting down the minutes hoping for that phone call telling them they're going to surgery because a donor was found. To pass them up in favor of someone who can still have a semblance of a normal life would be even more unjust.
 
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