hey guys
first of all, thanks for the well wishes/prayers
I'm back, it went ok I got in about 1:50 and never got out till like 4
had the usual ekg and echo, nothing fancy
nothing has really changed, same thing, shortness of breath and light headdedness are from bad valves, my mitral and aortic, this is probably the reason I passed out in June. he also mentioned the blood backing up in my lungs again, and that causing my shortness of breath (funny how knowing respiratory therapy stuff can help you out, I understood what he was saying, and can apply it! from what I understand he was saying this creates a restrictive effect on my breathing, basically by engorging my lungs and making them stiffer). he said they (valves) werent bad enough to deal with (again, basically the same thing as last time) yet. He mentioned going in with balloons, and valve replacement, but he said those would be pretty drastic right now for my situation. he said seeing a change within 2 years would be pretty fast, deterioration of my valves is gonna be slow, more like over the next 5 -10-15 years or so. I have to call in 2 weeks so they can fax me some paperwork so I can get my appt records, I will know more then, but I think I overheard the tech tell Dr Yeager my ejection fraction is 39%
he thinks I am working too much, and need to slow down, he will give me a note for work if need be, he really wants me to slow down! he thinks my exhaustion is a combo of overworking, and some of the heart issues
he thinks the chest pain is from scar tissue, he really highlighted how much scar tissue is involved post OHS.
he also mentioned transfer to adult congenital care, wants to wait till after school is done, and I get into my job.
(side note, he seems extremely proud of me, and wants to see me in the hospital/cant wait to see me/basically tells me I'd better be looking for him, LOL)
the bottom line is that I need to learn to cope with this stuff. I really dont know how thats gonna work, but I am just starting to see a counselor, and will talk with her about this.
My mother was very supportive of me when I called her after my appt, but my father was less than supportive, pretty much down right insulting. . .he said something along the lines of "sometimes you work hard, but sometimes all you do is chat" and my sister said that I was trying to be handicapped, and asked why I would want to do that. so, basically according to my cardiologist of 21 yrs, and my mother I am doing too much, but according to dad and em, I'm not good enough
good thing I've got a freaking counselor appt on thursday, I'm holed up in my room right now, I cant even look at dad or em right now without wanting to cause some serious damage to someone or something
(maybe its because I started my period this morning, called the cardiologist because I am having issues, ended up in their office within 3 hrs of my call, on top of trying to get some paperwork done, and now that I have all that done, and made it through my appt alone, by myself, ok, and dad and em are being totally unsupportive, and now, its 7 PM and all I wanna do is SLEEP!!!)
ok, I dont know if I got everything I wanted to in here, but I am really tired, and need to go to bed I'll check back in and add if I need to or fix it if I need to in the morning, I am in a total daze right now, still trying to process everything, I think sleep is my best friend right now, I feel kinda numb right now
thanks
later
Morgan, 21
