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Dawn-Marie
I saw Dr. Gutierrez yesterday for a follow-up visit after my Valvuloplasty. Dr. Ferraro does them, but he mostly stays in the cath lab. and relies on the other cardiologists at Medicor to do the follow-up visits. I got some answers, but not all the answers i want. I did find out that while he opened up my bicuspid valve somewhat, i had critical aortic stenosis and now it is very severe aortic stenosis, so i still have a big problem. Then, as i said earlier, they found i have severe pulmonary hypertension on top of it and there is no treatment since it is due to the bicuspid aortic valve problem. What i don't understand is why i feel worse, not better, after the Valvuloplasty. I've had more trouble breathing and i had one episode of feeling like someone stomped on my chest and then i heard buzzing and almost fainted. Then i've had more episodes of chest pain and there were two times that i had major headaches and was slurring my words when i tried to talk. I never get headaches. Also, my blood pressure has always been very low...ususally 80 over 58, and sometimes lower. Now, all of a sudden, my blood pressure is high for the first time in my life, and i'm on Bumex, Spirolactone and Metropolol (new medicine for me). My blood pressure the last couple weeks has been too high...today it was 140 over 89. I told Dr. Gutierrez about all that is happening to me and he just said maybe blood clots were shooting off the valve, but he's not going to do anything about it. He just told me that nothing more can be done for me unless something they are doing in France with the percutaneous aortic valve becomes available at Cleveland Clinic. Dr. Ferraro had talked with Dr. Svensson at Cleveland Clinic, but i asked him and his nurse what Dr. Svensson actually said, and nobody is telling me anything. Just that he won't talk to him again until April. I know from talking to The Partner Study nurses that nothing is going to chance in The Partner Study anytime in 2009 as they are booked up with people until then, and then the FDA may change The Partner Study, but they have no idea how. Veronica Peck, the main nurse, said even if i should be able to get the percutaneous aortic valve, with all the problems i have i will be a very high risk patient. Also, they originally did it on people with bicuspid aortic valves and they all died due to improper seating of the valve, and she said i would be one of the first ones they would try it on again and it will be very dangerous. I still would have to go down for tests ahead of time. Only people with very large arteries can have this done (usually men and not women) since the cage that carries the valve is large, and women don't usually have large enough arteries. If you were me, would you call Dr. Svensson (or his nurse) and ask just what he is telling my doctors that the nurses in the study have no idea about????? I don't want to be given false promises. It was hard having Dr. Gutierrez tell me that there is nothing more to be done for me other than keep my potassium level balanced. When i told him i was swelling more and having more trouble with my breathing and blood pressure, he just said i would have these problems and would have to live with them as it was normal as i also have congestive heart failure. He is going to do an echo in another 4 months to make sure the valve is staying open, but he said because of all the problems i had with the Valvuloplasty that they can't do another one if it closes up again.
Sorry to go on so much, but i am frustrated with them not being able to do anything more for me and their telling me to keep hoping for something from France to open up at Cleveland Clinic soon when the nurses in the study tell me otherwise.
Thank you for letting me vent. It helps since most of my friends asked how i was doing and when i told them the truth they haven't called or e-mailed me. People don't know what to say, i guess, so that's why they are not calling anymore.
Dawn-Marie
Sorry to go on so much, but i am frustrated with them not being able to do anything more for me and their telling me to keep hoping for something from France to open up at Cleveland Clinic soon when the nurses in the study tell me otherwise.
Thank you for letting me vent. It helps since most of my friends asked how i was doing and when i told them the truth they haven't called or e-mailed me. People don't know what to say, i guess, so that's why they are not calling anymore.
Dawn-Marie
I think Nancy's suggestions are a great place to start.
