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Please help, my heart is breaking

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  • Please help, my heart is breaking

    I was just diagnosed with IHSS. I have my tonsils, my appendix and I have never broken a bone. At this point I am so lost, I haven't really stopped crying since my diagnosis, and I honestly feel like I am having a nervous breakdown. My resting gradient is 50mm and after my stress test my gradient is 80mm. I know that is very high. I am 35 years old and have had NO health problems thus far. Before the diagnosis, I would regularly go out drinking and dancing until 5AM (no more). I cannot begin to describe my degree of confusion. Some sites say I can will be dead within a few years, and others say that I can live a normal life. I passed my stress test with flying colors. I was on for about 14 minutes to get my heart rate to 170. The doctor who administered the stress test didn't believe that I had IHSS because I reacted so well to the stress test, he was quite shocked when I layed down for my echocardiogram which showed a gradient of 80mm. My doctor thinks that I can live a normal life because of my family history (no sudden death) and because of my successful stress test. I was put in the hospital after my first echo for 2 days for observation. My oxygen is normal with no other symptoms. I am getting my holter that I will wear for a month tomorrow. I have just found out that it is likely that other members of my family have this. I can't begin to describe how devistated I am. Does anyone have any real idea if this disease does in fact progress and does anyone know of any mortality rates that I can actually understand? Any information would be so helpful. I just found out about this 4 days ago, and I am in complete shock. Thanks in advance for any guidence with this.

  • #2
    Re: Please help, my heart is breaking

    Dear Jon,

    First of all, I'm glad you found us. Second, YOU CAN LIVE A LONG, FULL LIFE!!!! You will not be dead in a few years. There is a lot of scary information out there on the Internet. The mortality is usually overstated because HCM was mostly only seen at its worst and only in major heart centers. Only about 1% of all those with HCM die every year.

    The third thing to understand that HCM is a very, very broad spectrum disease. What I mean is that there are people who live their whole life, never knowing they have it at all and then there are a few who need a heart transplant. Most of us are somewhere in between.

    The fact that you are healthy otherwise is a great thing and speaks well of your future. So does not having sudden death in the family.

    Since you are already in your 30s, it is highly unlikely that your heart walls will thicken any more. However, you'll get echoes every year or two to check up, just like the rest of us.

    HCM does not mean the end of the world. It means that you need to take better care of yourself. Keep active, but not drinking or smoking. Don't sit in a lump on the couch because that will only make you feel worse.

    We are all here for you, too, and know how you feel.

    The other key to HCM is seeing a specialist. The vast majority of doctors just don't see enough of it to be able to deal with all the HCM permutations. Please call the office to talk to Lisa about a referral. We don't do them over the board --not personal enough.

    hang in there --you are going to be fine,

    Sarah

    Comment


    • #3
      Re: Please help, my heart is breaking

      Dear Jon, welcome to the message board. I'm glad you've found us. Sarah has given you great info, others will tell you about their lives. You will find much encouragement here. Everyone has some "down" stories, but when you learn more about HCM, give yourself time to get used to the idea, and learn more about others with the condition, you will not feel quite so overwelmed. Please call Lisa at the office or email and request a packet of info. Keep us posted, best wishes, Linda

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      • #4
        Re: Please help, my heart is breaking

        Jon, I know it can be a real shocker, but things are not as bad as you believe.
        You sound away too healthy to be leaving us next year or anytime soon, remember you've had this all your life and you are just finding about it now.
        What led to your diagnosis? were you having problems or was it just a regular check up that came back abnormal?
        Most of us find out much before you did.
        I was diagnosed in my early 20s and I'll be 55 Oct/1 and physically I am just fine. I ride my bike regularly and really I'm not restricted in much of anything.
        Now that is not the case in everyone as you will find out this condition runs the full spectrum of being not so bad to not so good.
        The fact that your doctor is referring to this as IHSS would indicate they maynot be right up to snuff for HCM. It was called IHSS years ago. Your doctor maybe a cardiologist but this does not mean they have handled many HCM cases.
        Do as Sarah suggested and call Lisa for the best advice you will ever receive.
        You say you have to wear your holter monitor for a month, that sounds like a really long time, normally it's 24 - 48 hours, are they looking for something in particular??
        Jon, hang in there you'll be just fine.
        Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
        So if you are capable of thought then you are capable of great things
        Good luck and stay well.
        Glen

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        • #5
          Re: Please help, my heart is breaking

          Dear Jon,

          Glen makes a good point ---one that I forgot---IHSS is the old name and a month long holter is almost unheard of.

          A specialist can evaluate you properly for any possible risk of sudden death and get you set up with medication if you need it.

          It really is essential that you talk to Lisa about your options and HCM in general. You'll feel a lot better, too.

          take care,

          s

          Comment


          • #6
            Re: Please help, my heart is breaking

            Dear Jon,

            You are not alone. Take a step back, take some deep breaths, and try to relax a little. I know it's the most difficult thing you've probably ever done. There are many people here who have felt exactly like you feel at some point or another. My husband was diagnosed with HCM - the preferred name for IHSS - when he was 35. That was 3 years ago and he is fine. He's had no problems. Remember when you read about others with HCM that everybody is different. Please give Lisa a call at 973-983-7429. She can help you find a great doctor and can be a saint when it comes to helping people understand HCM. Good luck to you.

            Reenie

            PS, I deleted the other post because it was a duplicate of this one. I hope you don't mind.
            Reenie

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

            Comment


            • #7
              Re: Please help, my heart is breaking

              Thanks for all of the wonderful words. I just left Lisa a message. I got my records from my hospital stay today. I also talked to my cardiologist's partner when I got my houlter, and he said that my heart is very strong and that I have only a small thickening. He told me that I am at the very mild end of the spectrum. I've decided to persue this with care, but I now realize that I can't sit around worrying about having a heart attack, especially when all indicators point towards a healthy prognosis so far. I am going to find a specialist and work with him/her. I'll be back again and again, as I am so happy to have found this place. Thanks again!

              Jon

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              • #8
                Re: Please help, my heart is breaking

                Jon,
                I will try to call you later today - -I have been sick (again my voice!) I hope to be feeling better soon...now I am off to the doc. If you have not done so please leave your evening # at the office so I can call you tonight if I have a voice..
                HANG in there!!! You are going to be OK..you have support and information!

                Be well,
                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: Please help, my heart is breaking

                  Hi Jon,

                  I freaked out quite a bit when i first got my diagnosis (i was 39), but things get a lot better once you realize you're not going to drop dead at any moment. Don't stress out about your gradient just yet. My gradient is about double yours... 100mm at rest... and i'm not going anywhere anytime soon. I'm on a good beta-blocker and feel fine most days. With any luck i'll irritate everyone who knows me by living to be a hundred!

                  Take care,

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

                  Comment


                  • #10
                    Re: Please help, my heart is breaking

                    Hey Jim... I would love to be irritated that way!
                    You bring up a good point and thanks for that...Jon look back in the search features for some of Jims original posts... (not to pick on you Jim) but you will see what he is takling about...the fear, understanding and then the getting on with your life! It is really a great story!
                    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


                    • #11
                      Re: Please help, my heart is breaking

                      I'm very new at this as well. I'm 38 years old and was just diagonosed with severe hocm this past July. My pressure gradient was 110 mg and I was apparently a candidate for the myectome. I had the septal myectomy 3 weeks ago and about 2 weeks ago I had the ICD. When I was first diagnosed I was asked to wear a monitor for 28 days. It was called an event monitor and I was to press a button if I thought my heart was doing something abnormal. I'm not much of a medical person but I apparently had something wrong and the cardiologists, EP, and the surgeon thought I needed the surgery. Since the surgery I have not been lightheaded, so therefore I am happy with the results.

                      Good Luck to You!

                      Kathy

                      Comment


                      • #12
                        Re: Please help, my heart is breaking

                        [quote="Sarah"]Dear Jon,



                        A specialist can evaluate you properly for any possible risk of sudden death and get you set up with medication if you need it.
                        =========================================

                        Hi to Jon!

                        I am sure you will soon find the right way for you to deal with HCM!
                        I quote Sara because from my experience - no specialist can tell if or when something will happen.
                        The main problem is sudden death.
                        Different people have different stories - HOCM is for 3 generations in my family. The grandfather is 66, the father 36 and the son 6 years old next week
                        Some people are able to live with a very high gradient, others will have different symptoms.
                        Is good you are feeling so well!
                        So yes - it is possible to live a normal life with this disease - but I hope it will direct you to live every day for the maximum - like it it is not just a normal other day...
                        Wishes for healh, peace and love!

                        Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
                        Haifa - Israel.

                        Comment


                        • #13
                          Re: Please help, my heart is breaking

                          Hi and welcome. I come from a family with HCM as well, I was diagnosed at 19, had surgery at age 25, got married and had a daughter, while I was pregnant my mother found out she had it at age 53 and is now 66. She has a pace maker. My daughter was just diagnosed in May 2003, and she is on beta blockers. I am also on beta blockers, and yes I do have good days and bad days, but I live every day to the fullest and I keep a very postive attitude and that helps alot. Keep your chin up high.
                          Life is too short to worry about the trival things in life, So live life to the fullest.

                          Comment


                          • #14
                            Re: Please help, my heart is breaking

                            I was diagnosed about 6 years ago. Six months ago I was in the emergancy room. My gradient is so high it is sucking one heart valve through the other. I have been put on more drugs to slow my heart down or I will have to have a mechanical heart valve put in and a pace maker. I just turned 50. I have five children and five grand children and to think I have passed this gene on to even one of them breaks my heart. I have Diabetes on top of this. But we have to keep smiling and try to live what life we have to the fullest. I refuse to sit around and mope. Think good thoughts.

                            Comment


                            • #15
                              Re: Please help, my heart is breaking

                              WildBill -
                              Have you seen an HCM specialist yet. I would want a second opnion prior to moving forward with a MV replacement - thats a BIG move. You may be able to have a myectomy or valve repair ... a specialist can help you make these calls.
                              With ALL due resepect to local cardiologist - -they simply do not see a great deal of HCM and that makes it hard for them to know all the possible treatment options - - this in large part due to the fact that we are all "just a little different". (gee how many times have you all heard me say that line!)

                              If you need some names and numbers contact the office (the # is below)

                              Be well!
                              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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