I had the follow up with L and Dr. W today. It was rough, but much better than I expected it to be. So for that I'm glad. They re-did the ECG, which wasn't surprising. L came in and asked family medical history questions. She left the room and came back and asked a few more questions. For some strange reason they thought I had been adopted. I assured her that I wasn't. She left again and came back again and asked history questions. It's a significant history. My grandfather sat down on the end of his bed and died. My father at the age of 56 went to sleep one night and didn't wake up the next morning. My brother was 48 when he stood up from the chair he was in and fell dead to the ground. I have an ECG from my father that indicated that he had a prolonged resting phase of the heart. I took it with me as well as the report from Dr. K's diagnosis. L left again and came back a few short minutes later with Dr. W. I went back over the account of my faint and my family history with him. L asked how I was diagnosed with LQTS. I explained that the original diagnosis came after a routine ECG. It was sent to Dr. L who reviewed it and had me come in to do a stress test. Three years later Dr. K had me repeat the stress test and I showed them the report from that test. I gave them the ECG from my father and Dr. W was able to point out on it where he saw the prolongation. After that we talked about my reluctance to getting an ICD, and realistically, he doesn't want to place one until he has information from a Loop Monitor. He admitted that he's worked with Dr. L and was impressed by his reluctance to render a diagnosis of LQTS. (Believe me he wasn't reluctant with me. He marched right into the room, handed me a prescription for a beta blocker and a pamphlet on LQTS and told me to Google it and avoid strenuous exercise and medications, and that was that.) He, Dr. Was also impressed that I was able to offer the documentation required to back my argument. I didn't make this stuff up after Googling strange rare diseases that make you faint. This was what I was actually told. I seriously, seriously shake my head. This isn't the disease du-jour. It isn't MS or Chronic Fatigue or Fibromyalgia. You can't go on disability with this. LQTS is more of a dangerous pain in the rear end than it is anything else.
A loop monitor is a device that looks like a thumb drive with it's cap on. It is placed over the heart and sends an ECG to a monitoring station in case of a cardiac event. It can stay in place for up to three years. If the monitor shows that I have Vfib events then an ICD (about the same size as a key fob) or Internal Cardiac Defibrillator can be placed to shock my heart back to a normal rhythm if it goes into Vfib. Pros: It will end the question about whether or not I have LQTS. (you wouldn't believe the amount of people who tell me that I don't) Cons: It has to be placed in a place that could compromise my TRAM. If the TRAM becomes diseased, that is it. There is no more tissue to be harvested. A silicone replacement can't be offered. The only choice is a prosthesis. It will also leave me with a hard decision to make with a doctor that I don't fully trust.
I will be talking to Dr. M soon to determine the true risk to the TRAM and try to weigh the options there. Seriously, it is coming to vanity over life expectancy. But maybe I can glean hints to keep the TRAM healthy and reduce the lymphedema. The life expectancy has it's own question. How long do I really want to hang out here knowing that I would otherwise be with Christ? After all, He is really the one who determines life and death anyway.
So do I go with this treatment plan, or do I wait for Dr. K to return and weigh in? I so trust Dr. K so much more than Dr. W. But I do have to say that Dr. W isn't as much my way or the highway as I was expecting.