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  • My fiance has IHSS....

    hi- i have just gotten home from yet another trip to the hospital to visit my 28 year old fiance. he was diagnosed at age 5 and up until about 2 years ago has led a pretty normal life (with the help of a dual chamber pacer and norpace and verapamil). 2+ years ago he started going into a-fib. at first it was once every 8 months, then 6 then 4, 3...you get the picture. each time we'd run up to the hospital and the doctors would cardiovert him back to sinus rythm. about two weeks ago the dr's decided to do an ablation (after an unsuccessful first attempt due to a scar tissue blockage issue). since the ablation he has been up to the hospital 3 times due to flutter and has had several changes in medication. i know that flutter is a normal side effect during the healing process, but 3 times??? he has been cardioverted 2x's and is now in the hospital waiting for a 3rd cardiovert. the dr's are first loading him with amiodarone in hopes to keep him in sinus rhythm.

    i have so many questions that i'm hoping you can all help me with- i'm not even really sure where to begin. my first priority though is to help him stay positive. with that...

    the dr's said that an IHSS heart has only a 50% success rate with this procedure. is there anyone out there who has had this procedure and had it work? i'm hoping to give him some good news.

    thank you!

    (sorry for rambling...i hope my question makes sense. there is just so much to get out)

    -vanessa

  • #2
    Re: My fiance has IHSS....

    Vanessa,

    Welcome to the board... and you are not rambling at all. Your questions and concerns are quite valid, and ones that anyone in your position would want answers to. I have not had an ablation myself, so i can't help you with the particulars... but there are many here who have, and will be happy to give you as much information as you require when they come along and read your post.

    Hang in there

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

    Comment


    • #3
      Re: My fiance has IHSS....

      Dear Vanessa

      I'm glad you found the board. There are a few things to know...

      First, if the doctors are calling it "IHSS" they are behind the times. That is a very old name for HCM and it makes me wonder how much experience they have with it. Is he seeing an HCM specialist? Where do you live?

      Second, ablations are not as successful on HCMers because the actual muscle is messed up and ablating one bad pathway means the heart can find others --thus the flutter. The amiodarone may convert him on its own. It is very strong stuff.

      Please read up on amiodarone in the drug resource section of www.mayoclinic.com.

      Third, use the serch feature at the top of this board to find the tons and tons of posts on ablations, amiodarone, and just about any other question you have. This board has been around for years, so many things have been discussed on these topics that will be helpful.

      And finally, while afib is not the preferred state of being, it is a livable one and he needs to evaluate how much should be done to get him back and not let them cause even more damage in the process with too many ablations.

      take care,

      s

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      • #4
        Re: My fiance has IHSS....

        Thank you Sarah and Jim...

        I already feel so much better having found this site.

        Sarah, to your point, yes the dr's do call it HCM..not IHSS. i am just used to referring to it that way.

        we are in nyc and out of columbia presbyterian with some incredible doctors.

        please forgive my ignorance, but i have never know anyone else with this condition and his only started "acting up" in the last 2 years. for my fiancee, ignorance has been bliss and he has had a rather blind faith in his doctors- who although are wonderful, speak in terms that i do not always understand.

        i am trying to educate myself as much as possible so that we can see what our other options are.

        if this ablation doesn't work, we don't really have a back up plan. i didn't realize that living in a state of a-fib was an option. does this mean that he'd constantly have to get cardioverted? is it possible for him to have a pacemaker with an automatic cardiovert installed? i can't imagine him living in a-fib. he is always so uncomfortable in it.

        also, does this mean that his condition is getting worse? i am so worried about him and not really sure what to do.

        he also leads such an active lifestyle- does he need to take it easy? he loves to travel and we've already had to cancel a few trips. we are also supposed to take our honeymoon in italy this september after the wedding and his family wants us to cancel it. he doesn't want to hear it though...

        any words of advice are welcome....

        THANK YOU!!!!

        Comment


        • #5
          Re: My fiance has IHSS....

          Vanessa...Your drs. are behind the times. I was told I had IHSS last Oct. This was only because my Mother had it. The drs. Just called it the same. By using this website I found out that it is now called HCM. I had a Septal Myectomy 5 weeks ago at the Cleveland Clinic. Now I am recovering nicely at home. I was also on amiodarone. I broke out in a rash from the neck down. They took me off it, now the rash is gone.

          I was told a myectomy was better for people that are younger (49). It seems to have worked for me. My ribs still hurt, but that is expected.

          This site is full of information and people with experience. You will really learn a lot.

          I hope things work out for you and your fiance. And welcome to the club...

          Patrick Ekardt
          (Tigger1)
          Cincinnati Ohio
          " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

          Comment


          • #6
            Re: My fiance has IHSS....

            Hi Patrick. She's talking radio frequency ablation, not septal alcohol ablation. It's a different procedure for a different problem. It ablates the electrical pathways that cause the afib.

            Vanessa, I would suggest you call Lisa Salberg. Her phone # is at the bottom of this page. She's in NJ, not far from NYC. She probably even knows your fiance's doctors. She will help you put this into perspective. As far as the afib goes, if he's in continual afib he won't need to be cardioverted all the time. It's not the preferred way to live, but sometimes it can't be avoided. Sarah's brother has been in afib for over 10 years, I think. She's also in afib now, for quite a while. A couple years maybe? She knows of which she speaks. Good luck and welcome to the HCMA.

            Reenie

            PS, Darn the luck! You just missed our HCMA meeting in Morristown, NJ by a couple of weeks. You could have met a room FULL of HCM'ers.
            Reenie

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

            Comment


            • #7
              Re: My fiance has IHSS....

              I do recommend talking to Lisa about his doctors as she knows which one KNOW HCM and which ones _think_ they know HCM. There are some exceptional HCM guys in NY.

              It is a very confusing disease, so don't feel bad about not grasping everything at once.

              There are three kinds of heart ablations. The one most often discussed here (and I'm sorry, I should have mentioned it) is the alcohol septal ablation. Probably 90% of the posts in the board are referring to THIS ablation so don't freak out when read long tirades against it. ASA removes a chunk of the septal wall to help the mitral valve work properly.

              Radio Frequency Ablation or Pulmonary Vein Ablation (RFA/PVA) kills a spot on the pulmonary vein just before it enters the heart to prevent afib from happening. It is used a lot for people with normal hearts but not so much with HCM hearts because the HCM heart has a tendancy to do what your finance's is --finding another pathway to an arrythmia (the flutter).

              AV Node Ablation. This one kills the AV Node and forces the heart to be 100% pacemaker dependant. Most people with afib feel better with this as it controls the heart rate. However, it doesn't keep the atria from fibrillation, it just makes you feel better when it happens.

              Implantable Defibrillators are sometimes set to convert afib when it happens. Hoever, this is not done if he is constantly in and out. Not a good way to live. Zaps are not fun.

              Does it mean he is getting worse? Well. HCM isn't necessarily a steady downward progression. It is more episodic in nature. Some years good, some bad. I had a stroke in 2000 and the whole year wasl h*ll. This year has been fine --and yes, I'm in afib. My aunt has been in afib for 25 years and is pretty active, my brother for 10. He runs an internet company --so he manages. It is an adjustment, but people do live full lives in afib.

              Going abroad should be based on how he feels and your ability to get emergency care over there just in case. There are some excellent HCM doctors in Italy. Lisa can hook you up.

              I hope this helps a bit.

              S

              Comment


              • #8
                Re: My fiance has IHSS....

                I'm not entirely certain, as i once was, that i would dismiss a doctor based solely on the fact that they use the term IHSS. During my two weeks at the Cleveland Clinic before and after my myectomy, i was actually a bit surprised to hear several younger doctors there using the term. After peeking at the Cleveland Clinic website, i discovered that the term is used there to describe the obstructive form of HCM:

                The heart muscle thickens, most commonly at the septum, just below the aortic valve. If the septum becomes too thick, the passageway to the aortic valve becomes very narrow, limiting the flow of blood from the left ventricle to the aorta, called "outflow tract obstruction." This type of hypertrophic cardiomyopathy may be called:

                Hypertrophic Cardiomyopathy (HCM)
                Hypertrophic obstructive cardiomyopathy (HOCM)
                Idiopathic hypertrophic subaortic stenosis (IHSS)


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

                Comment


                • #9
                  Re: My fiance has IHSS....

                  i can't even begin to tell you how greatful i am for all of your responses. at your suggestions, i will call lisa tomorrow.
                  happy father's day to all of you father's!
                  with deep gratitude, vanessa

                  Comment


                  • #10
                    Re: My fiance has IHSS....

                    Hi Vanessa,

                    Tuesday’s and Thursday’s are usually the best times to catch Lisa in the office. I’m sure she will be able to help you a lot.

                    Hey Jim,
                    Do you think the CCF put IHSS there – in third position – as a sop to those doctors who still use the term, even though it seems to have fallen out of current usage? I kind of have a feeling that’s what it’s all about.

                    OK, to all you dads out there – Happy Fathers Day, from a big old grand-daddy,
                    Burt

                    Comment


                    • #11
                      Re: My fiance has IHSS....

                      Hi Vanessa,

                      Welcome to the HCMA. Please give our office a call so that we may get some preliminary information on your fiance and schedule a phone conference with Lisa. Although she is only in the office on Tuesdays and Thursdays, I am here Monday through Friday and can set up a good time for both you and Lisa to talk.

                      I hope we hear from you soon.

                      Kelly
                      Life is 10% what happens to you and 90% what you do with what happens to you.

                      Comment

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