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Nothing good can come of assuming someone does something on purpose, unless you want to provide backup for why you think it's on purpose. I do notice there are posters who wind you up, and I find it rather sad. I guess I could look at aspectre's post history to find out if you have some reason to think he'd do that, but I really don't have the energy.
Anyway, I don't want to blame the victim here but I also think you (and I mean you, JH) might sometimes possibly rise to the bait a bit too quick.
And aspectre, if you did do this on purpose, I'll have you know my first child died of heart failure and I can't think of anything bad enough to call you.
Posts: 11017 | Registered: Apr 2003
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Kat - did they ever figure out what caused it? Did his heart just heal or what? If I'm out of line I apologize. Its just something I wonder because of all I've gone through with my son.
Posts: 1132 | Registered: A Long Time Ago!
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I just reread the thread to see if I had said it before, and I realized that I did not update this thread when he woke up.
Ryan was in a coma for about a week when he woke up. I think...man, I don't remember the term for it. What he had, though, is what those high school football players have who fall over dead during practice. I think it's a congenital condition, but it doesn't manifest until it's usually too late. I'm sorry - that's not specific at all. Maybe one of the doctors know what I'm talking about.
Posts: 1753 | Registered: Aug 2002
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Marfan Syndrome? [It's a connective tissue disorder that is inherited in an Autosomal Dominant fashion. That information really should have been sent along with him, IMO, as not having his heart watched could be fatal (as we all well know now *wince). I trust he is having his eyes checked on a regular basis, too.]
Edited to add link, information, and: I'm so glad he came out of it, katharina.
Posts: 14017 | Registered: May 2000
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I think he is being taken care of, medically. I hope that includes his eyes.
It was a closed adoption, and I think there were no medical details that were passed along at all.
We are all very, very glad that he woke up. He is not unaffected, though. Being in a coma for a week did have some phsyical consequences, and his personality has changed as well. He was always quiet, but he hardly speaks at all now. My dad thinks he's definitely depressed. It's hard on his marriage, because they are relying mostly on his wife's income and he's so quiet even when he is home that I think she's lonely. He and his mom used to talk once a week or so, but that stopped after then as well. This is from a while ago, so maybe it's gotten better since and I haven't heard. I hope so.
Posts: 1753 | Registered: Aug 2002
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quote:Originally posted by Javert Hugo: It was a closed adoption, and I think there were no medical details that were passed along at all.
I know, but ... this is in most cases a death sentence. I suppose the limits have to be absolute, but it seems fundamentally horrid. (However, I guess it might make some babies near impossible to get adopted, too. )
Posts: 14017 | Registered: May 2000
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Wow, I am so glad that he did wake up - I guess this was during a break from Hatrack for me as I don't remember this, kat, I'm sorry I did not express sympathy during the trying time your family experienced.
As an aside, Marfan was one of the disorders they considered in my son, because he has connective tissue issues, but the geneticist ruled it out.
I hope your stepbrother starts doing better soon, sorry to hear that he is still having issues from the coma. Posts: 14428 | Registered: Aug 2001
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Just wanted to add a few things. I am a pharmacist that works at a hospital in Salt Lake. We do many left ventricular assist devices(LVAD), right ventricular assist devices(RVAD), bivad's (both left and right) and PVAD's which is a very temporary device inserted into the ventrical through a large artery in the groin. I work with the doctors, nurses and patients very close. I go on rounds with them on a daily basis.
The device(s) are really quite remarkable and we are learning and developing new ones very quickly. I feel very fortunate to be involved with the mechanical cardiac support team.
To get an LVAD requires that you be in a hospital that provides the service. There are very few in the country. Getting an LVAD is not a simple procedure. Often patients are sedated and intubated (tube down trachea to breath)for prolonged periods of time(sometimes months).
Being young is certainly a positive in the recovery period.
There are two plans for receiving an LVAD. Destination or bridge. Destination just gives you a few extra years of life. We have patients that have had 3 different LVAD's over the last several years. Eventually they get tired of all the hassle and illness and decide not to replace a failing LVAD. Bridge to transplant is used to keep someone alive for a year or two, until a heart for transplant becomes available.
Living with an LVAD is not easy. You are disabled. It is unlikely that you will be able to work and hold a job. You get ill often. You require many, many, many doctor appt., procedures, diagnostic tests etc. You will be on many, many drugs. Sometimes in the neighborhood of 15 to 20 different drugs per day.
That being said, I have seen people have remarkable recovery's over the last few years.
The biggest problem now with LVAD's is that they only last one to three years on average. Friction is the main culprit. Parts just wear out. They are in the process of developing a frictionless pump (one is actually available) that uses magnets to suspend the spinning device that moves the blood. Another challenge is clotting. Whenever you stick a foreign device in the body, blood tends to clot to it. Patients have to be anticoagulated, which is a risk itself.
On to other stuff. When you say his heart is working at 10% that is referred to as ejection fraction(EF). A normal EF is around 60-75%. The heart does not expel all the blood with each beat, a small portion does remain. Having said that, 10% is pretty bad.
In my area of practice we see the sickest of the sick heart failure patients. Other hospitals refer to us. A 10% EF is not a death sentance. Some people do and have recovered. However, not everyone does.
As for causes of heart failure(HF). That's a tough question, especially for someone so young. The number one cause of HF is ischemia, which is unlikely in someone so young. Ischemia is a lack of blood flow to the heart (think heart attack). The second cause is high blood pressure. The third is idiopathic, a big word that means WE DON'T KNOW. Other causes include valve problems, virus, pregnancy and even grief (Tako Tsubo).
Anyway, the third leading cause of heart failure is a big fat "we don't know". It's frustrating, for health care providers and patients to not have an answer.
Just a side note, certain head injuries and strokes can cause a particular type of heart failure. Are you clear which came first? The heart failure or the seizure?
I am by no means an expert but I do have some experience in the area.
If I can answer questions I will do my best. Their are others on the board that give better answers and documentation though.
Tull
Oh man, I just noticed the dates on this. If you want I can delete my post.
[ August 28, 2007, 11:53 AM: Message edited by: Tullaan ]
Posts: 98 | Registered: Aug 2003
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Tullaan, your information is fascinating, thank you. I should ask how Ryan is doing - I haven't been updated lately and I haven't asked. I don't think he's had surgery since, so now I'm curious what they did for him.
Posts: 1753 | Registered: Aug 2002
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Something I found interesting about LVADs that gave me a whole new view on what the heart is and is not is how restricting it is to have something that can't speed up and slow down in harmony with your activity rate and respiration.
Oh, good, I'm not going insane. There is something called Long QT wave syndrome. I think that is the one more likely to suddenly kill young athletes. There was a bit of research being done on it with Mormons in the late 90's because of their geneaological research practice (linking cases, not getting heart attacks from research).
Posts: 11017 | Registered: Apr 2003
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Interestingly enough, there are many, many drugs that can proglong the QT wave. Which can lead to lethal arythmia's.
I am a stong proponent of AED's. They need to be far more proflific and more available. If there were AED's in gym's, schools, theatres etc. fewer people would die suddenly.
Edited to add: They are available in many airports, casinos, etc. A lay person with no training can use them, since the machine talks you through the process with an electronic voice. There are certain automatic doublechecks (e.g., won't fire off if it detects a working heartbeat) inherent to the machines.
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