[HCM with other problems.]

Author: Karen Homer (---.sttl.uswest.net)

Date: 07-31-02 17:05

Hi All -- I am a member of the association but this is the first time that I have submitted any comments or questions. Both my sister and I have HCM -- both diagnosed after 40 -- for me it was age 52. I am now 56. I was beginning to deal with the HCM and the restrictions (I had been a very athletic person -- swimming, walking, playing soccer, weight training) and was coming to terms with never weight training again but still enjoying walking and swimming. Then, at age 54, I was diagnosed with a disease called sarcoidosis -- which is even rarer than HCM -- and it has affected my lungs - but can attack the heart (and, yes, I am very scared about that). Now when I am tried or out of breath, I am not sure whether it's the sarcoidosis or my heart.

Has anyone else dealt with another disease with having HCM? I have talked to both my cardiologist and my pulmomary doctor and each seems to think my symptoms are caused by the disease they don't treat! I'm tired all the time and have days where I feel sick. A lot of times my upper back hurts -- like someone has taken a baseball bat and whacked me hard there. The days that I have trouble breathing are usually the sarcoidosis acting up -- I feel like I have an elephant sitting on my chest.

Is anyone out there going through the same thing? Good news for me though, the last year my HCM didn't progress and the sarcoidosis, although my lung capacity is down to 80%, my functioning remained the same!

Thanks for listening (or reading)

Karen

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[Re: HCM with other problems.]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 07-31-02 19:37

HI,

I just looked up sarcoidosis on the web, it is the first time I have heard of the condition in anyway. It sounds to me that either doctor could very well want to toss you back to "the other guy" as man of the symptoms are similar. I would suggest a visit to a larger center who can look at both issues and help you manage your symptoms, regardless of the cause. I would be happy to give you a few suggestions as to centers...feel free to call the HCMA office for more information.

Many of us with HCM have other medical problems that are in no way connected to HCM.

Best Wishes,

Lisa

HCMA

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[Re: HCM with other problems.]

Author: Karen Homer (---.client.attbi.com)

Date: 08-02-02 02:23

Thanks for the reply Lisa . . . I live in Seattle --- do you know of any centers in this neck of the woods? I do know the closest sarcoidosis specialist is in Southern California . . .it's so rare that there aren't many doctors that specialist in treating it. My cardiologist probably has the highest amount of HCM patients in this area -- about 25. First doctor I was sent to, I was his third HCM patient and I decided that I wanted someone with just a little more experience, even though I have to drive about 30 miles to see him.

Thanks.

Karen

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[Re: HCM with other problems.]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 08-04-02 19:25

Karen,

please call the office and we can discuss some doctors.

Thanks

Lisa