If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you


No announcement yet.

An Update


About the Author


Martha Find out more about Martha
  • Filter
  • Time
  • Show
Clear All
new posts

  • An Update

    I discovered this website in June after I was diagnosed with HCM. Its been a wild ride since then. My biggest problem is insurance. We are self employed and pay dearly for crummy insurance. It went out of business this year and left us with huge bills. We were able to get my husband on another policy but because I was diagnosed with HCM, I can't find insurance on me. Next set of problems....the doctor that diagnosed me was in another town ( where my daughter lived ) and he has now quit the practice and moved away. I decided to find a doctor where I live, finally got in to see one but he wanted to repeat ALL the tests that were done at diagnosis at hospital in Dallas. He did a few in his office and said he couldn't determine what my problem is...... he wanted more tests......
    back to insurance problem....can't afford all the new tests without the insurance.......I'm still having problems with racing heart, shortness of breath, etc. He has increased dosage of topril, but he can't find a problem with me ????? Last week I called his office because my heart was
    driving me nuts. It was so irregular even with the increased topril, I wasn't able to sleep and VERY short of breath. It took him 4 hours to call back then his nurse called and said.... " the doctor said for you to see your family doctor and he will refer you to a cardiologist!" I said, but Dr B IS a cardiologist. She said..." the doctor said you need to see your family doctor and he will refer you to a cardiologist!" I just sat there stunned. He dropped me.......... I assume because of the insurance, possibly because I questioned whether he had read all the reports from the hospital but he dropped me as a patient!!!
    My heart problems are stressful........at the least, but not having insurance.........You can't get in to see a doctor without a card. You can't get insurance after a diagnosis of heart problems, we don't qualifiy for assistance because we own our own home and business ( which does NOT mean we have money!!!)
    Sorry for dumping on the group. I know there's nothing you guys can do but I just wanted to say it. I would LOVE to go to a well respected doctor who knows about HCM but I don't have that choice!!!! The insurance system bugs me and the medical profession bugs me and you have to have both in this life!!!!!

  • #2
    don't apologize

    Dear Martha,

    You are not dumping on us ---this is what we are here for.

    First of all, many states have a plan for people who are uninsurable. Please visit: http://www.naschip.org/what_is_a_risk_pool.htm for info.

    Second, please call Lisa anyway as you need treatment and she may have more suggestions for your. 973-983-7429.

    That cardiologist did you a favor by dropping you. Truly. He doesn't sound like he was qualified to treat you, but couldn't tell you that openly.

    Please talk to Lisa as she is aware of doctors outside of the major centers who are in touch with the HCMA and perhaps one of these is near you.

    take care,



    • #3
      Martha, I'm sorry you are having such a difficult time. You will get some input from others on this site as to possible routes to take. Talk to Lisa at the HCMA office if you have not already done so. In the meantime, remember that Emergency Depts. CAN NOT turn anyone away without appropriate screening first. This is your backup plan (at least one of them) till you get things squared away. If you have a situation that you feel is an emergency, go to the nearest ER. You must be screened by a qualified professional, and not released until appropriate care/followup is provided. They must have someone on call to handle cardiac emergencies. Most (and I won't say all, because I'm not sure of this) will have a call list that patients will follow with if hospitalized or if discharged. This list rotates thru the doctors on staff. It's a means of providing patients with doctors and doctors with new patients(it is business for them). They must take every case their time on call, whether insured or not, at least for that initial problem. They don't have to keep them forever, but many will. This does not get an HCM specialist for you, but you do have access to care in an emergency. Let's hope we can get things in order for you instead of having an emergency first. You will get many helpful hints here. Best wishes, keep us informed. Linda


      • #4
        I must admit I am a little confused by your doctors suggestion to call your GP and get a referral??? He did offer you treatment and give you medication - it does not seem ethical for him to not take the call and to not give you advise at the very least.
        Re the testing - if the tests have been done - -you can take the results to a new doc for a consult, explain that your paying cash for the visit and a good doc will work with you and the reposts as best as possible to help you.
        the Big $$ is in the testing not in the consult.
        Call the office Thursday - we can talk then.
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)