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Welcome to your 40's... you have HCM?


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  • #16
    I was diagnosed at 31. Had another son at 34. My cardioligist never mentioned that it was hereditary. He also made an eppideral mandatory for labor. This caused me to blackout and nobody knew why. Now we know. The symptoms slowly got worse. The last year they have really progressed. I have a myectomy scheduled for July 19 at the Mayo clinic. I am now 40. We never learned that much about this disease till the last couple of years. We learned about this site from Dr. Nishimura at Mayo. We also have a new cardioligist, locally now. It was hard finding one that was an expert in HCM around here.


    • #17
      I was dx'd at age 14 due to blacking out while running bases during the heat of the day at softball practice. I can still remember that so clearly. I was running and started to feel kind of faint, so I sat down in the dug out and everything turned black and white. People sounded really far away and everything was dark w/ a bright background.......I wonder how close I was to SCD that day. It scares me now to think of it! I can't remeber which dr. recently told me it probably wasn't due to my HCM, but I was probably dehydrated or something! Anyway, after they got me straightened out on beta blockers, I didn't have any real problems. I had the occassional palpitations. In Sept. of 2002, at age 29, while sitting doing nothing, I went into a-fib. I think it might have been a combo. of too much caffiene and an MSG lunch and not enough water, I don't know, but it wasn't pleasant. After 2 1/2 mos. in that they got me straightened out and put in an ICD and I haven't had any problems until my recent a-fib bout, which I was cardioverted out of w/ in 24 hrs. So, here's to hoping for an uneventful future, but w/ my family history, I doubt that will happen, but I can always hope!! Oh, BTW, I don't have any obstruction or gradient!
      Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.


      • #18
        Hi Jim - I was diagnosed when i was around 18 or 19 in college. I basically took no notice of it as much as possible and did as much as i could till i was in my mid to late 20's . It was then i guess my obstruction made me more symptomatic, I had a AICD implanted and eventually led to last weeks visit with the surgeon!!! . I am 29. My case deffinatly progressed pretty quickly when i hit about 25/26 but i am sure my lifestyle did not help in the least


        • #19
          In my case diagnosed at 16 (IHSS, of course), turning symptomatic at age 43.

          Back when I was diagnosed the technology for echocardiograms didn't exist--certainly not within reach of the average cardio's office or hospital. No wonder alot of HCM diagnoses were missed.

          --Living life on the edge .. of a continent!
          Charter member: Tinman Club


          • #20
            I was also diagnosed with IHSS at 16 back in 1975. I have been taking beta blockers ever since, and would visit a cardiologist about 2xs a year. I took this condition lightly and never thought it would affect my life. I don't know how I made it through the 80s ! How I abused myself. I did not have any symptoms that I knew of (although I always felt my heart beat fast when I had the flu or was ill, but thought that was the way everyone was). I did take one of my cardiologist's advice and did not have children, but that may have been a convenient excuse. I started having Afib this year at the age of 46. The first time I realized that what I have is serious, and it is not something to take lightly. I always thought I would go through life unaffected by this condition. What a wake-up call I've had.


            • #21

              I wish you the best with your Myectomy at Mayo on July 19.

              I will be thinking of you and praying for you.

              You will receive the best of care at Mayo.

              All the best to You,

              P.S. If I may suggest, bring with you some slippers that are open in the back. I brought slippers that went around my whole foot and due to some water weight gain during the surgery, the slippers I brought were really tight. It made it a little more uncomfortable to walk around.
              Take Care.
              49 yrs. old
              Diagnosed at 31.
              Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
              First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
              Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
              Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
              My brother passed away suddenly at 34 yrs old from HCM.
              2 teenage children, ages 17 and 15.


              • #22
                I was given an acutal diagnosis (a name) to what was wrong with me just this past year (39 years). I then find myself having a myectomy at Mayo a few months later. I have however known something wasn't quite right for about 10 years. I'm sure that my lifestyle didn't help things too much either as I am a resaurant manager and it was very easy to end the evening having drinks at the bar. I saw a few different cardiologists who couldn't quite figure out what was wrong. Thank goodness for my primary care physician. He was the one that sent me to Mayo to see Dr. Ommen. I have always been told by every doctor (even dentists) that I have seen "did you know you had a heart murmor?" I always replied "that's what everyone tells me, is that serious?" and they all replied "you probably shouldn't worry about it" EEKK now I know that was the wrong answer.

                Thank God for Mayo because I feel better than I have in well over 10 years

                41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005


                • #23
                  Doug's story somewhat resembles mine. As a child from a mother with IHSS a always had a 'murmur' but no one cried wolf when a was a kid. In my early 30's (looking back) i began having real symptoms (but i didn't make the connection - first, we didn't know it was heriditary, and second, an underweight-non-smoker with heart problems i should exercise more ). I always thought that the slight pains, SOB and palpitations i had were 'normal' oh well...

                  In 1997, during a routine screening, the same murmur attracted attention of a company physician. When i mentioned HCM, he had an ECG made and sure as ****, it wasn't normal. The cardiologist i was referred to however, missed the diagnosis on both an abnormal ECG and an abnormal echo (though not showing thickening it showed some abnormalities)

                  In 1997 - remember, back then ablation was already making inroads so HCM wasn't a black hole anymore.

                  Well, after developing paroxysmal AF in 1999 and again my GP missing the boat this time by prescribing BB's when needed but nothing else (no referral, not linking with earlier reports) on worsening symptoms i went to the docs again in 2004 (just turned 40) with my 'own' diagnosis: HCM (heriditary). Now that was confirmed quickly

                  Sooooooooooooooooooooo, like many other things, it is said our bodies are fit for 40 years, and then natures guarantees expire. I wonder if it is the worsening of the disease or the decay of our bodies that sends us to the docs in flocs after reaching 40 Guess we just cannot compensate anymore (having 'missed' the opportunity to stay dead on the field because we're not so interested in sports )
                  \"Hope is disappointment postponed\"

                  Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                  Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                  Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                  Meds (current) sotalol, dabigatran, furosemide.


                  • #24
                    Originally posted by Ad
                    ...like may other things, it is said our bodies are fit for 40 years, and then natures garantuees expire. I wonder if it is the worsening of the disease or the decay of our bodies that sends us to the docs in flocs after reaching 40...
                    Good point. It is quite true that the human body was only 'designed' to last about 40 years. Only with modern medicine have we significantly extended that. I hadn't realized that there was a guarantee in effect up until that point though! I could have gotten a trade-in before 40??? LoL.

                    That's what I get for missing staff meetings.

                    "Some days you're the dog... some days you're the hydrant."


                    • #25
                      Hey, I'm in the market for high-quality, pre-owned repair parts and I'm not expecting a warranty, either? Know any donors?

                      --Living life on the edge .. of a continent!
                      Charter member: Tinman Club


                      • #26
                        hi everyone I was told I had this condition when I was 36 yrs old.I was extremely sob .no energy ,after a big meal Iwould have trouble walking about a 100 ft.I just thought I had gained weight and I needed to get in shape.one night after dinner my heart just took off when I reached the hospital it was beating 138 bpm and my blood pressure was through the roof.I was scared to death.Im serious! I really thought I was a goner I was having all the classic heart attack symptoms.after an angiogram I was told I have non obstructed hcm.I was put on toprol and verapamil and later altace.I have an interesting twist.when I was 27 yrs old I went to the dr for chest pains and they took an ekg It was abnormal.I was instructed to drive myself to the hospital and they decided to do an angiogram because my ekg showed what appeared to be blockages.the angiogram showed normal heart function ef of 70%its now 51%,but their where signs of hypertrophy(slight)of the left ventricle,and what they called myocardial bridging where strands of heart muscle had grown over the artery in places.this was considered great news they sent me home and told me I was fine no blockages everything was fine.you wouldnt believe after that how many long runs I had went on once a 10 mile run swimming laps 50 at a clip.even holding my breath under water for as long as I could.I was a landscaper so I spent alot of time dehydrated but would have shaken it off as nothing.I have been completely reduced at this point I walk,but cannot do no where near what I use to.I mention all of this because.obviously something was wrong In my first hospital visit.I was still able to go for quite some time with no limitations in 2000 I even trained to box at the local PAL.for about six mos.sparred and everything.sometime I guess around 34-35 things took at turn for the worse my heart obviously remodeled and Im where Im at now.Its scary to think about your own mortality I dont even feel like Ihave begun to live.I want to stay alive and somewhat healthy for as long as possible. lets forget the 40yrs old numder and start looking at 60.I hope we are all still talking and sharing for a long time to come!!! can I get an amen
                        One day at a time.


                        • #27
                          Well I was told at the age of 45 that i had HCM but they called it IHSS and i about died right then because that is what my brother died with 15 years prior well i did see a specialist last year and was told the only thing left for me would be a transplant was referred to the transplant team here and was told my V02 oxygen wasn't bad enough yet so we are playing the waiting game, they say my heart is very stiff but not stiff enough, how stiff does it have to be, i'm told when i'm bed ridden i can go on the list, and just think all this started because i wanted my nerve pills upped when my doctor noticed my heart murmer sounded rather bad and sent me for tests

                          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


                          • #28
                            Hi Michael

                            I had my first myectomy when I was 20 yrs old. I was told if I didn't have the procedure I wouldn't live to see my 21st birthday. At that time it was their belief that people with IHSS would not live to be 50. When I moved to Minnesota from Pennsylvania, I had to seek another cardiologist. I went to the Mayo Clinic in Rochester, MN and they did extensive testing. At my second visit to Mayo, I was told I needed another myectomy (I was 48 at this time).

                            I lived in fear that I wouldn't get to be 50. I am now 52. I still have problems (CHF, chest pain SOB), but I'm still here to talk about it.

                            I think age is just a number and you should live everyday in whatever way you are capable that day. I have some bad days where I stay home from work and sleep, but then there are weeks that I don't even know I have a heart in my chest.


                            • #29
                              Originally posted by michael obrien
                              I hope we are all still talking and sharing for a long time to come!!! can I get an amen
                              Amen, Michael!

                              I've recently gotten back into mountain-biking as a means to lose weight and get back into shape following my myectomy. I gotta tell you folks that it has been such a great experience for me so far that I've started to set some pretty tough fitness goals for myself and I am now even considering entering some events next summer. (Like a century ride).

                              Now before everyone poo-poo's me on this, bear in mind that I'm not looking to win... just finish. But now that I've finally found my 'niche' and am on the go-go-go... I defy anyone to stop me.

                              I say let's all start thinking about the things we CAN do... rather than all the things that we CAN'T.

                              Yours in rebellion against HCM,


                              "Some days you're the dog... some days you're the hydrant."


                              • #30
                                Hey Jim I'm right there with you!

                                Are we going to do that Tour of Florida we were talking about! Hey I could see it now. We could do a Tour of America raising money for HCM awareness! Maybe we could get Lance to donate us some bikes instead of yellow we could do red.

                                I'm all out for REBELLION!

                                Mary S.


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