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Dawn-Marie
Hi Everyone ~ I'm FINALLY home...Yay!!! Thank you very much for all the prayers and well wishes....i appreciate them so much! I had some other issues that made me go into the hospital a couple days earlier than the planned surgical date of July 17th. I had surgery to take care of them and i'm feeling much better now.
As far as the scheduled aortic valve replacement, Dr. Strzalka told me he consulted with a new cardiac surgeon in Erie, Pa., and he told him that i would be way too high a risk to operate on. Dr. Strzalka was already worried that i would not get off the ventilator and this doctor confirmed his thoughts. Dr. Strzalka has talked with doctors at both Cleveland Clinic and Columbia-Presbyterian Hospital in New York City. One of the doctors told him i would be the ideal candidate for the Percutaneous Aortic Valve if i fit all the criteria. I thought it would be a simple matter of their getting copies and CD's of all my tests and then saying whether or not i was accepted. It's not that simple. I have to fit the criteria for the valve, which means my heart and the heart valve have to be just the perfect size. I'm not all that good at understanding lots of medical jargon, but i know now that i will have to go to Cleveland Clinic or Columbia-Presbyterian several times to be evaluated before i will even know if i meet their requirements. Medicaid had refused to cover the transportation, but Dr. Strzalka called them this week and managed to convince them to pay for all my transportation to whichever hospital i end up going to. I'm SO happy that he did this because this was what was preventing me from even having a chance to get the percutaneous valve.
Yes, i am scared of being a guinea pig, but i know now that this is probably my only chance of getting a new valve and living a quality life thereafter. I definitely do not want to be on a ventilator for life, and this appears to be my only chance. I guess the reason i don't like the thought of being a guinea pig is that i was one back in 1981 when i was the third person in the world to have what they called the world's first artificial spine. My doctor read about it in People and Time magazines and sent me down to Dr. Charles Edwards in Baltimore. He evaluated me in November and by March, 1981 he figured out what he could do to help me. He did 15 hour microsurgery to remove a huge cancerous tumor from my spine and right lung. He had hoped to remove it without paralyzing me (he said i only had a 5 percent chance of paralysis). Unfortunately, i did become paralyzed from T1 level down. My back has collapsed several times as the surgery was not perfected and i have had numerous surgeries for scoliosis. If i'd had the traditional surgery in our town, plus radiation, Roswell Park said i would have become paralyzed immediately, but i wouldn't have had all the issues with my back collapsing. But Dr. Edwards surgery was the only chance i had to not become paralyzed so i went for it. It's just hard to be a guinea pig again after undergoing all i have in the past, if you know what i mean.
I'm sort of in limbo now. Dr. Strzalka sent information to both hospital. Cleveland Clinic lost all the information, so they reforwarded it. He had hoped that they would be able to do a hospital to hospital transfer of me to Cleveland Clinic, but somehow Cleveland Clinic misplaced the information he sent them. They have it now, but he's going to be on vacation all next week. They were going to get ahold of him, but now he will be on vacation next week. I'm not sure if they will get ahold of me directly, or not.
Well, i think i'll be going for now. I need to get a few things done before my aide comes. I had a rough day yesterday. I had such low blood pressure and potassium levels that i fainted and was unconscious for over three hours. I've been loading up on Gatorade (what my nurse told me to do). So far today i'm not feeling too dizzy. Just happens when i move too quickly.
Thank you again everyone. I'll be back tomorrow. Today has been a crazy day, but hopefully, things will calm down now
As far as the scheduled aortic valve replacement, Dr. Strzalka told me he consulted with a new cardiac surgeon in Erie, Pa., and he told him that i would be way too high a risk to operate on. Dr. Strzalka was already worried that i would not get off the ventilator and this doctor confirmed his thoughts. Dr. Strzalka has talked with doctors at both Cleveland Clinic and Columbia-Presbyterian Hospital in New York City. One of the doctors told him i would be the ideal candidate for the Percutaneous Aortic Valve if i fit all the criteria. I thought it would be a simple matter of their getting copies and CD's of all my tests and then saying whether or not i was accepted. It's not that simple. I have to fit the criteria for the valve, which means my heart and the heart valve have to be just the perfect size. I'm not all that good at understanding lots of medical jargon, but i know now that i will have to go to Cleveland Clinic or Columbia-Presbyterian several times to be evaluated before i will even know if i meet their requirements. Medicaid had refused to cover the transportation, but Dr. Strzalka called them this week and managed to convince them to pay for all my transportation to whichever hospital i end up going to. I'm SO happy that he did this because this was what was preventing me from even having a chance to get the percutaneous valve.
Yes, i am scared of being a guinea pig, but i know now that this is probably my only chance of getting a new valve and living a quality life thereafter. I definitely do not want to be on a ventilator for life, and this appears to be my only chance. I guess the reason i don't like the thought of being a guinea pig is that i was one back in 1981 when i was the third person in the world to have what they called the world's first artificial spine. My doctor read about it in People and Time magazines and sent me down to Dr. Charles Edwards in Baltimore. He evaluated me in November and by March, 1981 he figured out what he could do to help me. He did 15 hour microsurgery to remove a huge cancerous tumor from my spine and right lung. He had hoped to remove it without paralyzing me (he said i only had a 5 percent chance of paralysis). Unfortunately, i did become paralyzed from T1 level down. My back has collapsed several times as the surgery was not perfected and i have had numerous surgeries for scoliosis. If i'd had the traditional surgery in our town, plus radiation, Roswell Park said i would have become paralyzed immediately, but i wouldn't have had all the issues with my back collapsing. But Dr. Edwards surgery was the only chance i had to not become paralyzed so i went for it. It's just hard to be a guinea pig again after undergoing all i have in the past, if you know what i mean.
I'm sort of in limbo now. Dr. Strzalka sent information to both hospital. Cleveland Clinic lost all the information, so they reforwarded it. He had hoped that they would be able to do a hospital to hospital transfer of me to Cleveland Clinic, but somehow Cleveland Clinic misplaced the information he sent them. They have it now, but he's going to be on vacation all next week. They were going to get ahold of him, but now he will be on vacation next week. I'm not sure if they will get ahold of me directly, or not.
Well, i think i'll be going for now. I need to get a few things done before my aide comes. I had a rough day yesterday. I had such low blood pressure and potassium levels that i fainted and was unconscious for over three hours. I've been loading up on Gatorade (what my nurse told me to do). So far today i'm not feeling too dizzy. Just happens when i move too quickly.
Thank you again everyone. I'll be back tomorrow. Today has been a crazy day, but hopefully, things will calm down now
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