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Dawn-Marie
Hi ~
I finally heard from Cleveland Clinic today. The nurse from the percutaneous valve study called me this morning to say they are going to send me papers to sign to agree to be part of the study. I'm not really sure if i want to, or not.
As i already knew, it is a blind study. If i'm deemed to be operable, i will either get the traditional surgery (which i already know will make me be on a ventilator for life) or one of the transcatheter valves. If i'm deemed to be inoperable, i will either have a valvuloplasty (which i've been told previously will not work for me since my valve is so bad it will not have a good result and will shoot plaque to my brain and cause a major stroke), the transcatheter valve or just medicine (which i've also been told is not a viable long term option to keep me alive).
One thing i didn't like is i wanted to talk to an actual doctor there and ask him questions as to how large a percentage of people are doing good that have had the transcatheter valves, and she said no doctor could talk to me until i was there and had 3-4 days of tests. She also said that once the papers are signed that patients are strongly discouraged to not drop out of the study. I do want the option to drop out. I have already signed a Health Care Proxy saying i do not want to be on a ventilator for life. Unfortunately, no heart surgeon will touch you when you have a DNR in place, so i would have to waive it. I also do not want to have the Valvuloplasty and have a major stroke. I'm already paralyzed from the upper chest down and i do not need to have a major stroke on top of it! I just hope that Dr. Stewart will level with me and let me know all the complications that are happening with the percutaneous valve (if i even get it). My neighbor's son had Dr. Swensson and while he was an excellent surgeon, he said he hardly talked to him and also would say one thing to him one day, and then the next day deny even saying it. I don't want a doctor like that. Right now i'm so confused as to what to do (as you can tell). I'm quite sure i'm going into congestive heart failure again, but Dr. Strzalka never called me back even though i told his nurse what was happening, and both my cardiologist and his nurse were out of the office today. So, i'm still swelling and having chest pain, but i refuse to go to our local hospital. Three different hospitals all say "death valley" is here when our ambulance brings people to them (including Cleveland Clinic), since the doctors are so bad here that by the time people get to the better hospitals there is no helping them.
Well, thanks for letting me vent. I'm just so frustrated that a stupid computer will decide whether i live or die, since some of the options won't help me at all. It's very scary!
Dawn-Marie
I finally heard from Cleveland Clinic today. The nurse from the percutaneous valve study called me this morning to say they are going to send me papers to sign to agree to be part of the study. I'm not really sure if i want to, or not.
As i already knew, it is a blind study. If i'm deemed to be operable, i will either get the traditional surgery (which i already know will make me be on a ventilator for life) or one of the transcatheter valves. If i'm deemed to be inoperable, i will either have a valvuloplasty (which i've been told previously will not work for me since my valve is so bad it will not have a good result and will shoot plaque to my brain and cause a major stroke), the transcatheter valve or just medicine (which i've also been told is not a viable long term option to keep me alive).
One thing i didn't like is i wanted to talk to an actual doctor there and ask him questions as to how large a percentage of people are doing good that have had the transcatheter valves, and she said no doctor could talk to me until i was there and had 3-4 days of tests. She also said that once the papers are signed that patients are strongly discouraged to not drop out of the study. I do want the option to drop out. I have already signed a Health Care Proxy saying i do not want to be on a ventilator for life. Unfortunately, no heart surgeon will touch you when you have a DNR in place, so i would have to waive it. I also do not want to have the Valvuloplasty and have a major stroke. I'm already paralyzed from the upper chest down and i do not need to have a major stroke on top of it! I just hope that Dr. Stewart will level with me and let me know all the complications that are happening with the percutaneous valve (if i even get it). My neighbor's son had Dr. Swensson and while he was an excellent surgeon, he said he hardly talked to him and also would say one thing to him one day, and then the next day deny even saying it. I don't want a doctor like that. Right now i'm so confused as to what to do (as you can tell). I'm quite sure i'm going into congestive heart failure again, but Dr. Strzalka never called me back even though i told his nurse what was happening, and both my cardiologist and his nurse were out of the office today. So, i'm still swelling and having chest pain, but i refuse to go to our local hospital. Three different hospitals all say "death valley" is here when our ambulance brings people to them (including Cleveland Clinic), since the doctors are so bad here that by the time people get to the better hospitals there is no helping them.
Well, thanks for letting me vent. I'm just so frustrated that a stupid computer will decide whether i live or die, since some of the options won't help me at all. It's very scary!
Dawn-Marie
