Elevated voltage threshold Right VentricleLead

[Pam Alexson]

Well I had my Aicd re- interrogated at NEMC yesterday and it is ok for now . It is just going to use up more of the battery life. When or if it gets worse before or at the time of battery change they may have to drop another lead in. The a-fib was checked and confirmed not to warrant use of coumadin. We talked about cardiac rehab, checked into it and medicare will not cover it for a myectomy, the rehab girl asked me how many stents I had in after I had already told her the whole story of the disease and that it is not CAD. Another case of the uninformed and inability to hear or comprehend a very basic 101 on HCM. I told her I was not going to pay for what insurance should cover. She then told me she has worked with a couple of Cardiomyopathy patients. Whew, I know there has to be more then a couple of cardiomyopic patients around at least if we understand that many heart diseases lead to cardiomyopathy. She is probabably thinking "we only work with those patients who don't have cardiomyopathy and insurance won't pay if your heart disease might get worse" What a crazy uninformed ,inadequate, antiquated system we still have in some parts of this country. Is it any wonder that I was in an advanced state of HCM with Chf being dx'd as pneumonia and asthma before the picture was finally read right and I got the right Dx and the appropriate care. I know most of you will have similar stories to relay and this is our misfortune. I also started the process for getting my kids screened at the HCM clinic , I will try to be optimistic that none of the 3 have it but for at least for 1 of them at this time I am not sure this will be true .Take care. Pam . P.S. they were all screened over 3 years ago at the same place mine was done and I was told I only had a hyperdynamic heart, Huh!

[Linda]

Re: Elevated voltage threshold Right VentricleLead

Pam, I am a cardiac rehab nurse so I know I have surprised people more than once when I seem wishy-washy or hesitant about cardiac rehab for those with HCM. It is not an approved diagnosis in itself for cardiac rehab reimbursement. More importantly, it's not a well known or understood condition to those working in that situation. I know as HCMA members, it's a part of our lives, and obviously, there is a large population that are affected with HCM, but to those who care for cardiac patients on a daily basis, it is relatively rare. Too often, it's simply specialized and heard of occaisionally and then forgotten without ever being truly understood. That's not the case with everyone but it happens too frequently. That's why my big message about cardiac rehab is MAKE SURE THE STAFF KNOWS AND UNDERSTANDS THE CONDITION before you commit to the program. Make sure your cardiologist is on board and closely supervising the setup of your program, so that you are not placed at unnecessary risk. HCM involves a whole different way of thinking. Those on the message board who have gone thru cardiac rehab have no doubt helped to teach the staff quite a lot of new concepts. Those staff interested in learning have been motivated to research and learn a great deal. I'm all for rehab and working on improving what we have, but I really stress SAFETY FIRST.

For those who had successful experiences with cardiac rehab, how about some input? Linda

[Pam Alexson]

Re: Elevated voltage threshold Right VentricleLead

Linda thanks for the response , I agree with everything you said and because of this I would now not personally feel safe there . She had no motivation to change her thinking even with my explanation . As far as the insurance , of course they don't understand and it is not advocated to them as necessary treatment . I went through this similarly when i had to fight for my disability. To go all through the crap denials times 3 and then to have the government side decide hands down without question without a hearing, that my case warranted full and permanent disability was like a major DUH moment. I and everyone should get used to this kind of treatment and I think we get better at dealing with it and motivating to become stronger advocates but it just continues to be so frustrating and you think of shouting from the highest mountain: What is everyone who never heard of a rare disease just stupid and not caring to find out or not motivated to learn and is it easier to just continue to discriminate against us? Sorry for the vent just had to spew forth a little . Thank you for reading me. Pam

[Toogoofy317]

Re: Elevated voltage threshold Right VentricleLead

Pam, I feel ya on the frustration with the doctors part! You are preaching to the choir!

Gotta run, I have a speech in 15 minutes. Oh yeah, Lisa on my next speech I might need some help from ya!

Mary S.

[Linda]

Re: Elevated voltage threshold Right VentricleLead

Well, Lisa and the HCMA have certainly brought HCM into focus for a lot of people, including many in the medical community. Those rehab units that work with HCM do a great job and I really don't think the others intentionally slight the significance of the condition. It's just that they don't have the experience and first hand experience is an excellent motivation for learning. There are so many other things to keep up with, that the new thing gets put on the back burner till it can't be put off any longer. If you were to go to rehab in that unit and things came in on paper, that person would probably look carefully and do a bit of research. If you don't go, she will have no need to. I'll give her the benefit of the doubt . But you still have to look out for you. As for insurance coverage, the cardiac and pulmonary rehab professional organization along with many others in the medical community are working towards increased coverage and additional accepted diagnoses. We have to be convincing that the cost will be offset by improved physical condition and reduction in future medical costs. Linda