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I guess I can now officially apply for membership into the club. The diagnosis, confirmed by Drs. Maron and Udelson at Tufts on Monday – HCM which has in fact progressed to “end stage.” Kids will be screened next week.
The past week and a half has been especially stressful. I’ve been trying to follow the numerous suggestions offered here and get my butt over to NEMC for a proper evaluation. My current cardiologist has been out of town and my HMO won’t refer outside their own confined network. On top of the confusion about my own condition, I’ve been living with the struggle that my kids need to be screened. But should we pull the panic alarm if it is still not known whether or not I have the disease? The rumor alone, they might have the disease, could change these young lives for ever. My two boys have been attending “double sessions” for football (heavy duty pre-season training and workouts- temps have been in the 90’s) and I’ve been holding my breath for days.
Today, my PCP confessed that he agrees that the system is screwed up, that he will be the first one to vote for National Health Care Reform, that in this case he is stuck in the middle, and that I should continue to press, above him, for that referral. I just can’t imagine what argument could be presented that would show me that they have the patient’s best interest in mind by enforcing a policy that says I must use their “experts.”
Considering what I have learned just by spending a few hours on this (excellent!) web site, followed by the quick yet thorough analysis that was done at Tufts, it is alarming that my care to this point didn’t take a different course. But here my moaning will end.
I am thankful that I found this group, that I got into to Tufts and have been seen by the best. More appointments are already scheduled and I’m confident that the insurance coverage issue will be resolved one way or another. Some weight has been lifted from my shoulders but the breath holding will have to continue until the kids have been screened.
The past week and a half has been especially stressful. I’ve been trying to follow the numerous suggestions offered here and get my butt over to NEMC for a proper evaluation. My current cardiologist has been out of town and my HMO won’t refer outside their own confined network. On top of the confusion about my own condition, I’ve been living with the struggle that my kids need to be screened. But should we pull the panic alarm if it is still not known whether or not I have the disease? The rumor alone, they might have the disease, could change these young lives for ever. My two boys have been attending “double sessions” for football (heavy duty pre-season training and workouts- temps have been in the 90’s) and I’ve been holding my breath for days.
Today, my PCP confessed that he agrees that the system is screwed up, that he will be the first one to vote for National Health Care Reform, that in this case he is stuck in the middle, and that I should continue to press, above him, for that referral. I just can’t imagine what argument could be presented that would show me that they have the patient’s best interest in mind by enforcing a policy that says I must use their “experts.”
Considering what I have learned just by spending a few hours on this (excellent!) web site, followed by the quick yet thorough analysis that was done at Tufts, it is alarming that my care to this point didn’t take a different course. But here my moaning will end.
I am thankful that I found this group, that I got into to Tufts and have been seen by the best. More appointments are already scheduled and I’m confident that the insurance coverage issue will be resolved one way or another. Some weight has been lifted from my shoulders but the breath holding will have to continue until the kids have been screened.
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