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.

new to hcma


About the Author


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

  • new to hcma

    My name is Barbara and I have end stage hcm. My mom died at age 45 back in 1982 waiting for a heart. We were told that she had a viral dilated cardiomyopathy. She didn't know she had a heart condition until she went into heart failure at age 40. I went into heart failure after having my 2nd child at age 32. My mother's mom died after having her (my mom was the 2nd child). I had a biopsy that showed evidence of hcm. My son was diagnosed with hcm when he was 2 - he will be 10 next week. I have a daughter that will turn 13 next week as well, but she has thankfully remained clear of the disease so far. I see the transplant team at Barnes in St. Louis. I am not on the list now. They tell me I am borderline, so I am choosing to wait.
    Most people that I know from Barnes that have had, or who are waiting for a heart, have the dilated form of cardiomyopathy.
    I would love to talk to people who have end stage hcm. It helps so much to talk with someone who understands.
    thanks for listening.

  • #2
    Hi Barbara,

    I have end stage HCM. Myectomy done in July 2003. I only recently was diagnosed with end stage so it is new to me too. I am curious if you know what your ejection fraction is? Also what drugs are you doing if I may ask? I am on low dose of Atenolol now with medium dose of A.C.E. Inhibitor. I do not know if and or when I will be a cndidate for Tx but am very interested in chatting more with you. I am 40 by the way, diagnosed originally at 17.

    NEMC's (Boston) First Myectomy 7-22-2003


    • #3
      Hi again Barbara,

      I forgot to add that I also have dilated cardiomyopathy too. I became dilated sometime since October of last year and have an ejection fraction in the low 30s down from about 45 a year ago.

      NEMC's (Boston) First Myectomy 7-22-2003


      • #4
        Iam also near the end stage but my EF is still really high and my heart ventricles are very stiff, i did have a myectomy last year but it really didn't take care of the stiffness, i'm short of breath daily and swell like a blow fish, i hope you are doing ok and welcome to site

        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


        • #5
          new to hcma

          I am in heart failure. My ejection fraction is 30-35 %. Still pretty good!
          For those of you familiar with transplant testing on the bike or treadmill, my Vo2 max score is 15.
          I take coreg, coumadin, vasotec, spironolactone, and digoxin. I also take a magnesium supplement called magox.
          My septum is not thick now - I am dilating and thinning out.
          My son who is 9 has a septal measurement of 21-26 mm.

          My main complaint is all the arrythmia - pvc's pac's all the time.
          I also get what I call the Betty Boop head. My head feels huge and full of air - I hate that. I do have an aicd/pacemaker. I'm on my 2nd one.
          First icd was recalled 2 years ago, and I happen to have a marquis - which also has some type of battery problem. I have not heard from my cardiologist about what they are going to do. I pace quite a bit, but have not been shocked.

          Thanks to all who have replied.


          • #6
            Barbara, Welcome to the site. I know you will soon receive many more responses offering info and encouragement. Best wishes, Linda


            • #7
              Hello. You might want to consider calling Lisa Salberg at 973-983-7429 to talk about your situation. She has a lot of information on HCM and the details of end-stage HCM. Also, have you been seen by a specialist at any of the large specialty centers like the ones in Minnesota or Ohio? That wouldn't be a bad idea either.


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


              • #8
                Nice to see you online - it has been a while since we spoke. I thought of you when we started this portion of the website recently. I hope you find it useful!

                Take care,
                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)