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Dawn-Marie
Hi ~ Dr. Strzalka had called Dr. Lars Svensson at Cleveland Clinic and asked him if, even though i don't qualify for The Partner Study due to my having a Bicuspid Aortic Valve, he could possibly do a minimally invasive surgery to replace my aortic valve. I heard back from his nurse, Barbara May, that he denied me too, since he said my pulmonary function is so bad i would not get off the ventilator (same thing Dr. Strzalka had thought would happen). He suggested that i have a Valvuloplasty to open my aortic valve temporarily as he said that they hope that sometime in 2009 they will not be governed as much by the FDA and that they will be able to do it on people with Bicuspid Valves. But then the Finance Counselor called me and told me that i wouldn't be eligible to go there since i have New York Medicaid (as a secondary insurance...Medicare is my primary insurance). She said NY Medicaid won't pay for people in NY to go out of state anymore. I called my caseworker and she said that that is not true ~ that the truth is that Cleveland Clinic won't take anything but Ohio Medicaid anymore. They also called my former neighbor's son (the one i've talked about that has Marfan's Syndrome) and told him that if he hadn't been a patient there previously he wouldn't be allowed to go there anymore, but since he's had surgery there, they will still accept his NY Medicaid. So, now i have to see if they will pay for me to go to Columbia Presbyterian Hospital in NY City. It is more than twice the distance of Cleveland, so i'm not sure. I should have an answer sometime mid-week. I'm not even sure what to do. I originally was going to have a Valvuloplasty several months ago, but the Cardiologist, Dr. Ferraro, told me my valve was so calcified he said he wasn't sure he would be able to open it up all that much, plus he was very apprehensive about doing it since he said it could send plaque to my brain and cause a major stroke (just what i need on top of being paralyzed already). But i need to have a Colostomy done because of my bedsores and they cannot do this surgery unless my valve is opened up with the Valvuloplasty, because they are afraid i won't survive the Colostomy, because of my valve. I feel stuck and don't know what to do! At least i had the woman at transportation pre-approval laughing. Dr. Strzalka had the bright idea to somehow get my flown to France where they are doing the percutaneous valves and are not governed by the FDA so that i could get it done now. She said it will be hard enough to get me to NY, let alone France!!!! They do it in Canada too, but they do it in Vancouver, BC, which is way over on the other side of the country (i think). Plus i'm quite sure Medicare and Medicaid will not pay my bills for outside the country...it's hard enough when you go outside your state.
Would any of you go through with this Valvuloplasty? I'm dead for sure if i don't do anything, but it's going to be dangerous to do. Plus Dr. Svensson's nurse said there are no guarantees they will be able to do the percutaneous valve surgery on bicuspid valves next year...they are just "hoping" they can. But i have to get something done soon or my bedsores will get so bad i'll end up getting major sepsis from them. It's just been one thing after another lately, and i'm getting to the point where i just don't know what to do anymore!
Thanks again for letting me vent. I hope you truly don't mind. I don't have any family and my friends don't really want to listen to my problems, so i really need to come here and see what you all have to say about what you would do in my situation. I hope it's not too much of a burden to you all to have me tell you my medical problems.
Dawn-Marie
Would any of you go through with this Valvuloplasty? I'm dead for sure if i don't do anything, but it's going to be dangerous to do. Plus Dr. Svensson's nurse said there are no guarantees they will be able to do the percutaneous valve surgery on bicuspid valves next year...they are just "hoping" they can. But i have to get something done soon or my bedsores will get so bad i'll end up getting major sepsis from them. It's just been one thing after another lately, and i'm getting to the point where i just don't know what to do anymore!
Thanks again for letting me vent. I hope you truly don't mind. I don't have any family and my friends don't really want to listen to my problems, so i really need to come here and see what you all have to say about what you would do in my situation. I hope it's not too much of a burden to you all to have me tell you my medical problems.
Dawn-Marie