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taylorgram Find out more about taylorgram
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  • Ihss

    I was diagnosed with IHSS about 10 years ago. I have learned to live with it. Just recently I have had a lot of fatigue, shortness of breath, and swollen ankles. So now I have some conjestive Heart failure. I am taking Toprol and Lasix. I also have asthma, copd, and enphysema. I saw the cardiologist today and he wants me to be checked by a specialist out of my area. I live in Pennsylvania. He mentioned Maryland or Philadephia. He said something about a surgery where they remove some of the hardened heart muscle. I am totally confused. I had to quit my job because it involved a lot of walking. I just couldn't do it without getting completely tired out and out of breath. This is my first post so If I didn't do it right I apologize. I was doing fine up until about 3 months ago when the fatigue and shortness of breath started. Is there a better hospital or clinic to go to for evaluation.

  • #2
    Re: Ihss


    First of all... welcome to the board. Secondly... I'm in PA myself and with any luck I'll be headed to the Cleveland Clinic to have a myectomy (the surgery you are refering to) over the summer. I'm also in CHF, however I have not been fortunate enough to have a doctor prescribe me any Lasix yet, so needless to say I'm bloated up like a cow right now. Which part of the state are you from? Feel free to email or PM me anytime.

    Take care,

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


    • #3
      Re: Ihss

      I too live in PA. Maybe we should do a PA meeting sometime.
      God Squad co-moderator
      Nothing is as gentle as strength and nothing is as strong as gentleness


      • #4
        Re: Ihss

        Welcome! Sorry to hear about your increased symptoms.
        Presently the 3 best places to go for evaluations are Jim's Cleveland Clinic, New England Medical in Boston, and the Mayo Clinic.
        If you call the phone number at the bottom of each page of these boards on a Tuesday or Thursday, you will be able to talk to Lisa, who can give you all the phone numbers you would need.
        Other than the big 3, finding an expert on HCM (formerly IHSS) can be very difficult. As you scan these boards you will find way too many examples of cardiologists who give out mis-information. Read these boards and become an expert yourself.
        Should you actually require a Myectomy, I would be glad to be a source of information to you, having been through the procedure 3 months ago.


        • #5
          Re: Ihss

          Taylor, Welcome. Please call the HCMA office and talk about the centers most experienced and best options for your situation. You will be surprised at the amount of info available for you. Best wishes, Linda


          • #6
            Re: Ihss

            Hi Taylor,
            You are welcome here – and you’ve certainly come to the right place. The folks who have posted before me know from what they speak. I would strongly advise you to talk to Linda Salberg – our founder – and resident SUPER person. She is generally in on Tuesdays and Thursdays, and her phone number is at the bottom of the page. It might be a good idea to PM (Private Message) her first giving her all the information you have available, and setting up a specific time to call. If you have some way of recording the call, by all means do so. That way you can absorb all she has to say piece by piece at your leisure.

            OK, now about your drugs - Toprol, metoprolol succinate, is a beta 1 -selective (cardioselective) adrenoceptor blocking agent – commonly called a Beta Blocker. My Beta Blocker is Atenolol. I am also on Verapamil SR – another commonly used drug for HCM which is a Calcium Channel Blocker – and we both enjoy the diuretic effects of Lasix, plus I occasionally add Metolazone to help wring me out. (Isn’t CHF fun?)

            Now about your cardiologist. He sounds like he recognizes that he is not an expert in HCM. He is spectacular in that he recommends that you do be seen by an expert, and I’ll bet dollars to a steak dinner that he would be more than willing to work closely with that expert. I don’t know where you live in Penna, but you are within a day’s drive of two of the top three institutions in the country for HCM. They are the Cleveland Clinic, of course in Ohio, and the Tufts-New England Medical Center (NEMC) in Boston. The third is the MAYO Clinic in Rochester, Minnesota – a bit far for a one day drive. Lisa could probably help you a lot in getting you situated.

            We are each different and react differently to the various treatments, but the classical approach is to first try all the variations of medications before moving on to the next step. Of course echo results may short circuit these processes. The drugs most commonly used are a Beta Blocker and/or a Calcium Channel Blocker. For those of us with ‘water’ problems Lasix is the most common drug of choice. ACE Inhibitors, Alpha-Adrenergic Blockers, and Nitroglycerin are generally contra-indicated, and your cardiologist seems to have nicely avoided them, so he certainly isn’t a ‘babe in the woods.’

            If drugs fail, the next step is usually an Alcohol Ablation or a Myectomy, which is open heart surgery to thin down the septum wall. Then of course there are the Defibrillators, ICD’s, Pacemakers, and other electromechanical wonders for those who need them. Lisa is really the best one to talk to for all this stuff, but don’t neglect your own education either. If you haven’t already done so, read all the data at the front of this site, and then start scanning the various postings for the topics of interest to you. The scan tool is up at the top of the pages. Finally, if all else fails and you still have some questions, by all means post your question and we’ll all try to help. You’ll find us a pretty good bunch.


            • #7
              Re: Ihss


              You may want to talk to your doctor about beta-blockers because they can make asthma worse, if I remember correctly. You should look them up at www.mayoclinic.com's drug database and ask your doctor to check the PDR (physician's desk reference).

              and I fourth or fifth the recommendation to get thee to a specialist asap.

              take care ---don't worry too much, we all have ups and downs with HCM. it isn't a straight downward path just because you are having some difficulties right now.

              keep us posted,



              • #8
                Re: Ihss

                Welcome to the board, I am glad you found us!

                Please call the office and leave your contact information - I am off to a conference today but will call you back ASAP. We have many people who can help you.

                Be well,
                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)


                • #9
                  Re: Ihss

                  Posting on this Board, was a VERY SMART action for you to take! You will receive support & knowledge-which will help you make informed decisions for your on-going care. I too, was diagnosed with IHSS, 15 years ago & was very comfortable taking Beta Blockers & Diuretics, until I became symptomatic Winter 2003. I had a Septal Myectomy (the surgical proceedure that reduces the obstruction causing many symptoms). Do know at the onset-there is not a Cure-only relief from symptoms! I had my Surgery at Mayo.
                  Please feel free after talking sith Lisa, to ask any & all questions here on the Board. You will learn so much & gain strength, just reading the Posts. It's Vital that you are as knowledgeable as possible about HCM, Meds & all Options available to you.
                  Be Well