HI Teri, mctoone, Nan2 !!!
I should be hearing from Cleveland tomorrow on the exact date, but we do know its the first week of June. It was so hard to finally decide, because ALL of my local doc's said, "Cathy, the mortality rate is high, you are stable, and, lets just keep you home as long as possible", I guess I will never know which was the right advice. You had mentioned your heart was small......mine has enlarged significantly...tricuspid valve and mitral valves are leaking moderately, and the right side ventricle has caved in..they say like an S...which I can't really picture. The jugular vein distention has increased, and literally in the last two months, I now have veins that stick out so far its gross to look at...when I lay on the floor...the vein in my neck realy pops out...another in the temple area, and my forehead...it is really bad now....I also went into atrial fib TWICE this weekend, which is always scary...my heart was beating so hard, and rapid, my shirt was moving...the chest pain has encreased......and last night and tonight, the shortness of breath has increased...it feels like I can't catch my breath. THE acites or abdomen swelling has REALLY become out of hand...I couldnt see my feet, I was so big, and the pressure it puts on me is incredible. They tell me my liver is swollen three breadths...which I guess is three fingers. It is very ovious I am going downhill and fast...I went to the doc Friday, he is just a pain specialist, that prescribes my morphine monthly told me i still have the cardiac tamponade, which i still do not understand, he also said that when they lift the calcification, because there is so much, they are worried the heart muscle underneath has atrophied, and could fail, he used the example of what your arm is like after having a cast on...how the arm is weak and hard to work and use...he is worried that my heart muscle, or myocardium will be jsut like that...and will not be strong, he said there are no medicines for the right side of the heart...only the left...and the calcification could be holding the right ventricle up, and it could collapse when they unearth it, and the muscle may be so weak as to be worthless. Yikes!
The Las Vegas Review JOurnal is coming to do an interview on Tuesday, do you all mind if I mention this site??? I would like to tell them how much this has helped, and how the emotional support here has been my ROCK, and has given me the true courage to go forth. IF you all do not want me too, I will understand!
TO say I am scared is to put it mildly....after seeing my best friends mother go in the hosptial for a hernia and go into cardiac arrest and die, really hit me hard...I don't understand...
ya know Nan, I almost picked The Mayo Clinic, but, I met with Dr. Gordon Danielson, who was the head cardiothorasic surgeon at the time...this was two years ago...and he was quite old, and had a problem with one eye, it was only open half way, and I thought to myself, I want a surrgeon with both eyes WIDE open!! I have heard he has since retired!
I am also a bit worried as Dr. Bruce Lytle and Dr. Allan Klein plan on cutting under my left breast versus down the middle......a local cardiothorasic surgeon here said it was not a good idea...but, who am I to question them I guess.
They have ALL told me that if my heart fails during surgery, I will go on a heart pump until a heart becomes available...I pray that doesn't happen.
One thing I KEEP forgetting to mention, is I keep having a problem with my PLATELETS DROPPING...did any of you have that problem? I am down to 77 this month, and was 110 the month before, so, they are DROPPING fast and it worries me because I know one of the major complications is hemmoraging.....the local cardiogist here, does not know why my platelets continue to drop...also, how long is the pain BAD when you wake up from surgery from the incision, and will I be on a respirator? IF so, how long? IS there any other surprises?? I did not know about the drainage tubes, and someone said there will be something coming out of my neck.....do any of you know what that is? Also my memory is really bad, they say, I may not be getting enough blood to my brain at times, because my heart is not pumping efficently enough, it is constrictive...restricted. Also, HAVE ANY OF YOU been told what the cause of your constrictive pericarditis is due too? WE can only figure the fever I had at 19, it lasted ten days..I called my mother, she told me to stay in bed..I had a shake and bake..went from extreme hot to extreme shakes..cold...I was delerious after two days, and they said the only reason I didn't die was because of my age...but, because it was so long ago...thus the severe/heavy/dense calcification. My fever was 104; and I lived alone...my husband is having a hard time forgiving my Mother, because I called her crying begging her for help, I was so young, and she said she did not want to come over, as she might catch it. But that is par for the course, she is not coming to my surgery either, she ran out on me two weeks ago, picked a fight, and moved out of my guest house, and will not tell anyone where she is, but she is very selfish person, she tried to commit suicide a year ago, I stayed by her bedside day and night, she has major problems, mostly with acohol. But, if any of you might know what caused yours, please let me know...all my doctors can say, it must have been a virus of some sort, and after having a shake and bake for ten days, it damaged my heart. They believe, they have nothing else to go on, I did not have TB. When my son's have a fever now..I am a freak of nature...I have my son's at the doctors within minutes.
WELL, I have again, taken up more than my fair share of space...ANY information you can give me from beginning to end is so appreciated...I want to know what to expect, and having all of you behind me now has been so very important to me. AS this date grows nearer, I feel the paniac hit...it is six in the morning, and I have not been to sleep yet....I have had such a problem with sleep, it reminds me of death, and I do not want to shut my eyes....but it wears me out so badly. I am going to the funeral for my firends mom at noon today, I don't know how a funeral will affect me. BUT, I will tell you all this...I will REMAIN STRONG.......I will continue to PRAY for God's strength and courage...and I will try to get through this with as much grace and dignity as possible. YOU have all been GREAT, if I could only put into words how MUCH your words of encouragement HELP me....I have said this before, and I will say it again.........I don't know if I would have made it to this surgery now, had I not read your posts, your experience through this, and EVEN just your words of support...TERI..! have helped me so MUCH, you all have been a GOD SEND to me... Even just getting this off my chest, so to speak, has helped tonight..how do I thank you all??? SO sorry this is SOOOO long! God bless all of you...Your friend, Cathy