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Let me start by saying that we were finally able to see a true HCM Specialist. Dr. Asher with Cleveland Clinic is awesome!! 
It's wonderful to have a true specialist in the southeast now.
On friday, I went to the hospitals to gather the copies of all of Tommy's (hubby) event moniter strips, 24 hour holters, and cd's of the echos, cath's, etc. I began to review the written reports and then view the ekg graphs. Boy! Did I get upset.
We had been lied to over and over. There are multiple errors in his records. There is documentation that he was put on coumadin on several occasions for afib. he has never been on coumadin! They'd just restart the amio.
I recently took a class in interpretation of ekg's and acls certification for work. Now I knew how to read these strips better. There is a strip from 2002 that shows atrial tach to aflutter to afib to ventricular tach back to atrial flutter back to sinus rythmn. At that time we were told that it was just a little aflutter and that amiodarone would keep him in normal rythmn.
By the way the final written report does state the above sequence.
At this point I was glad that we were to see Dr. Asher on Monday. We had been told that his echos since surgery showed "NO" obstruction! (yet 3 reports state post surgical myectomy with obstruction) We also found that the so called local specislist documented in office notes that " even though he has gone through a lot over the past two years, he needs to let it go and get on with his life and get back to work. He is doing fine and continuing symptoms are not related to his heart."
When we saw Dr. Asher, he took a lot of time with us. He answered all of our questions. We reviewed all of the questionable documentation with him. He examined Tommy and confirmed our suspisions. Tommy does still have an obstruction, which is causing his severe symptoms. By the way he found the obstruction on the echo cd that I brought him. ( which was read to be a normal echo here locally) He has advised him not to work until we can get the sress echo and transesophageal echo done. We couldn't do it yesterday, there is a problem with Tommy's esophagus.
We are having a endoscopy done this month. We return to Dr.Asher for the stress echo and TEE or cardiac MRI on Sept. 17th. He wasn't happy that Tommy had two alcohol ablasions, a radio frequency ablasion and the triple CABG and myectomy. He agreed that we were misinformed about several options along the way. Depending on the testing outcome next month, depends on our options. There is a high chance that he will have to go through another myectomy. He is also getting the ICD. (Merry Christmas, right Lisa) We have told the local docs about his history and they kept telling us that he didn't need the ICD. Lisa and I knew better.
How is hubby holding up? Not to well. He went to work to day to talk to the crew. He is once again trying to keep his emotions to himself. I know he is scared, so are the kids. Myself? I have to keep my faith in God, he has carried us this far and will continue to carry us through this also.
Please remember to ask a lot of questions. Research as much as you can and always speak up when it doesn't sound right. We have had a horror story along our way. But we did challenge the doctors multiple times. Tommy would not be here today, if we hadn't!! I truly believe that we are on a road to recovery now that we found Dr. Asher.
Thanks for letting me vent!! It is always nice to vent to people who understand.
It's wonderful to have a true specialist in the southeast now.
On friday, I went to the hospitals to gather the copies of all of Tommy's (hubby) event moniter strips, 24 hour holters, and cd's of the echos, cath's, etc. I began to review the written reports and then view the ekg graphs. Boy! Did I get upset.
We had been lied to over and over. There are multiple errors in his records. There is documentation that he was put on coumadin on several occasions for afib. he has never been on coumadin! They'd just restart the amio. I recently took a class in interpretation of ekg's and acls certification for work. Now I knew how to read these strips better. There is a strip from 2002 that shows atrial tach to aflutter to afib to ventricular tach back to atrial flutter back to sinus rythmn. At that time we were told that it was just a little aflutter and that amiodarone would keep him in normal rythmn.
By the way the final written report does state the above sequence.
At this point I was glad that we were to see Dr. Asher on Monday. We had been told that his echos since surgery showed "NO" obstruction! (yet 3 reports state post surgical myectomy with obstruction) We also found that the so called local specislist documented in office notes that " even though he has gone through a lot over the past two years, he needs to let it go and get on with his life and get back to work. He is doing fine and continuing symptoms are not related to his heart."
When we saw Dr. Asher, he took a lot of time with us. He answered all of our questions. We reviewed all of the questionable documentation with him. He examined Tommy and confirmed our suspisions. Tommy does still have an obstruction, which is causing his severe symptoms. By the way he found the obstruction on the echo cd that I brought him. ( which was read to be a normal echo here locally) He has advised him not to work until we can get the sress echo and transesophageal echo done. We couldn't do it yesterday, there is a problem with Tommy's esophagus.
We are having a endoscopy done this month. We return to Dr.Asher for the stress echo and TEE or cardiac MRI on Sept. 17th. He wasn't happy that Tommy had two alcohol ablasions, a radio frequency ablasion and the triple CABG and myectomy. He agreed that we were misinformed about several options along the way. Depending on the testing outcome next month, depends on our options. There is a high chance that he will have to go through another myectomy. He is also getting the ICD.
(Merry Christmas, right Lisa) We have told the local docs about his history and they kept telling us that he didn't need the ICD. Lisa and I knew better.How is hubby holding up? Not to well. He went to work to day to talk to the crew. He is once again trying to keep his emotions to himself. I know he is scared, so are the kids. Myself? I have to keep my faith in God, he has carried us this far and will continue to carry us through this also.
Please remember to ask a lot of questions. Research as much as you can and always speak up when it doesn't sound right. We have had a horror story along our way. But we did challenge the doctors multiple times. Tommy would not be here today, if we hadn't!! I truly believe that we are on a road to recovery now that we found Dr. Asher.
Thanks for letting me vent!! It is always nice to vent to people who understand.
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