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HCM Diagnosis...1st stop the internet?

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  • HCM Diagnosis...1st stop the internet?

    7 years ago, I fell in love with the internet. At the same time, I changed my life around by going back to school and becoming a computer engineer.
    I use the internet as my news source. I use it to save money. I use it to keep track of my hobbies and culture.
    But other then a quick look through WebMD when I got my original HCM diagnosis. I never used this tool for my own health. I trusted both my cardiologists to properly evaluate my condition.
    A few weeks ago, my condition was upgraded to HOCM, my cardiologist was pushing for surgery, and I became more serious about research. Thus I found this website.
    Now, as I peruse these boards, I realize that there is a constant theme concerning the need for the patient to educate the doctor when it comes to HCM.
    Now, I’m new here. I do not know if this is constantly discussed or if it is part of this organizations approach. I would like to see an effort put forth to persuade any Cardiologist associations to encourage their Doctors to tell their HCM patients to go online as an initial starting point when they’re first diagnosed.
    Is it so hard for a doctor to just say “Realistically, I see more cardio-vascular disease patients in one day then I see HCM patients in a year”?
    Ok, I know we’re dealing with doctors who may have a rightful chip on their shoulders. But this diagnosis affects not only the rest of the patient’s life, but also can affect many members of their family. Because of my diagnosis, both of my children will need to be monitored. I have advised my brother to be checked, as well as his daughter.
    Here is quick story that tells the need for independent research.
    As part of my upgrade to HOCM status, my cardiologist gave me the name and number of another of her patients who had HOCM and had gone through a Septal Ablation.
    Just like me, he was advised to have this procedure when his tests showed a thickening septum. After a 2 day stay in the hospital he was sent home where the first night he passed out (heart block), was rushed back to the hospital, almost died, and had a pacemaker inserted.
    He says he is doing much better now, but still has some symptoms.
    It sounded to me that he did no research on his own and just went along with what our cardiologist said.
    If it wasn’t for Lisa and this website and the questions they raised, that could be me as well. Now, after many conversations with multiple doctors a different picture is being formed. It looks like a different drug therapy is going to be the next approach.
    Fx

  • #2
    Re: HCM Diagnosis...1st stop the internet?

    Dear FX,

    It would be great if more doctors could point patients to the HCMA or to other organizations that can help them, either with info or with support. The catch is that most doctors don't even know much about HCM and don't know we and others like us exist. We do our best to disburse information via the internet, snail mail, and word of mouth about what we are all about and how HCM affects families, not just patients.

    Let me tell you my story about a particular doctor's lack of knowledge about HCM.... (He's a resident, not a cardiologist.) I was giving family history to justify getting a referral for my 3 children to have echos done. He took the notes and I noticed that the "reason for tests" stated Dilated Cardiomyopathy. I took it back to him and explained the difference between HCM and DCM. He never changed the order. A week or so later I had an appt for myself. Again, family history came up. My husband has HCM, not myself, and he was writing this down. I said, "He has hypertrophic cardiomyopathy." He wrote, "IHSS, dilated cardiomyopathy." I explained again the difference and he corrected the records to reflect the right disease.

    Now, I ask, shouldn't anyone with rudimentary medical terminology know the difference between hypertrophy and dilation? The simple answer is yes. But he's not the first person that many of us have come across who don't get it. (No, he isn't my doctor anymore.)

    Many people here have had doctors who group all cardiomyopathy into one category. At a nationally renowned hospital the nurses tried insisting that my husband see the doctor who specializes in congestive heart failure. When I said that he doesn't have CHF, they said, "But he has cardiomyopathy!" It took several calls to get him in with a doctor who had a few HCM patients and not the CHF specialist.

    It just takes time. Learn what you can and be prepared for doctors to not understand what HCM is all about. You are your own best advocate.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: HCM Diagnosis...1st stop the internet?

      The HCMA goes to several medical conventions every year and has a booth in the exhibit hall were they collect doctor's info to send them the newsletter, to tell them about HCM, to sell Dr. Maron and Lisa's book on HCM and to direct them to the convention meetings about HCM.

      If the HCMA had more money, they could launch a bigger PR program, but it is an uphill battle.

      I know that many of you here are HCMA members, but some may not be--or even know that you can join the HCMA to get the newsletter (lots of research), and to support the annual meeting, education, awareness, and everything the HCMA does.

      If we all gave the HCMA $30 as a Christmas present, just think of all the education that could buy!

      my two cents (pun intended)

      Sarah

      Comment


      • #4
        Re: HCM Diagnosis...1st stop the internet?

        Sarah i think that would be a great idea, for people to do, Evan a family member, doing it in a loved ones name that has the disease, i personally would rather see money go for something like this than anything else i could think of, My kids are always asking me what i want for christmas, I think i will tell them to send a donation to HCMA this year, that would make my Christmas the best one yet, i know what it is like just like everyone here i'm sure about going to dr.s that are not educated on HCM, I went to a minor emergency room one day, when i told them i had HCM , the dr. sat on his stool and said tell me about this disease i was in awh, that told me that 's a dr. i did not want treating me
        Take care
        Shirley
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment


        • #5
          Re: HCM Diagnosis...1st stop the internet?

          Originally posted by shirleymahoney
          I went to a minor emergency room one day, when i told them i had HCM , the dr. sat on his stool and said tell me about this disease i was in awh, that told me that 's a dr. i did not want treating me
          Take care
          Shirley
          Shirley, I would say that he was a good doctor. At least he asked to know more about it. It's the doctors who don't know about HCM and don't ask that scare me.

          Reenie
          Reenie

          ****************
          Husband has HCM.
          3 kids - ages 23, 21, & 19. All presently clear of HCM.

          Comment


          • #6
            Re: HCM Diagnosis...1st stop the internet?

            That's a great idea for your family's gift to you!

            But I gotta tell you, I would rather have a doctor with the courage to ask me what HCM is and how to get more info than one who nods and pretends. Not that I wouldn't go see a specialist (I would!!!) but that at least you are getting a real, honest guy who isn't ashamed of not knowing.

            Although, it would probably bum me out in an ER situation --oh, wait! It has! Yeah. I can't tell you how many times I've had similar --but no one really asking about it, just being stupid and telling me stuff that is out of date and acting all smug. Humph.

            take care,

            seb

            Comment


            • #7
              Re: HCM Diagnosis...1st stop the internet?

              I agree, but it just threw me for loop, it was my first experiece with dr.s not knowing the disease, but i agree at least they asked. I just assumed every doctor knew how to treat it being it's been 16 years since my brother died with it, and he was diagnosed 8 years before that. I think every doctor should be educated on it or like FX said come to a sight like this one and read and ask questions here. Some patients could even teach them alot, through personal experieces even
              Shirley
              Diagnosed 2003
              Myectomy 2-23-2004
              Husband: Ken
              Son: John diagnosed 2004
              Daughter: Janet (free of HCM)

              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

              Comment


              • #8
                Re: HCM Diagnosis...1st stop the internet?

                You will be happy to know that MANY docs we meet DO send the newly diagnoised straight to the HCMA (or website) for information.
                Yes, Sarah is 100% correct, we do need more funding to get the message to more people. you may have noticed, I do not like asking for money...that is the last thing on my mind...however this is a flaw of mine and must be corrected.
                I do have an idea for a fundraiser EVERYONE can do and it is simple... It will take about 10 mins to 1 hour per person.
                We can have a "NO BALL"... it is a non function - you make up "invitations" and invite all your friends to attend an evening with those they love, food of their choice, entertainment they pick and they can do it any day that is good for them...it is called a night with your family.... and all they need to do is buy a ticket for $xx.xx and send it to the HCMA....and we include information on HCM. This educated, raises money and makes people smile.

                We will make the invitations and provide the envelopes for them to send the donation to us.... all you need to do is address the envelopes or send us the names and addresses and we will do the work...
                So what do you think??

                feed back welcomed!!!!
                Lisa
                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)

                Comment


                • #9
                  Re: HCM Diagnosis...1st stop the internet?

                  I don't have money to give. Those that know me know this has been an extremly challenging year. But I do try to help in every way I can. Each year at Disney our Cast Choir sings at the Candle Light Procession. We get a ticket to the parks for each show. I have asked around to see if anyone will help. They know my condition and what an advocate I am for HCMA. I am proud to announce that I have a few people who will donate some of their tickets to the HCMA. I know it is not much but it is the best I can do to help!

                  Also, the eighth is quickly approaching! Do we have any times? If you need any help getting things together get in touch with me!

                  Mary S.

                  Comment


                  • #10
                    Re: HCM Diagnosis...1st stop the internet?

                    Every little bit helps...and Disney Tickets...heck thats not little...we are happy to use them in our fundraising efforts. They were a BIG hit at the golf outing last year.

                    Thanks,
                    Lisa
                    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)

                    Comment

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