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Congestive Heart Failure and HCM

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  • Congestive Heart Failure and HCM

    To give you a history, I was diagnosed with HCM about 8 years ago and had very few symptoms until recently. In July I had an ICD implanted. In October I was diagnosed with HOCM. By December I was in the hospital with congestive heart failure. I had an alcohol septal ablation in January wich seemed to help. Now I am constantly fighting with CHF and symptoms seem to be nearly as bad as before the ablation. I had another echo done which indicated that my obstruction has not increased. I am very frustrated. I did some research on CHF and was not pleased to find out the mortality rate after diagnosis. Everyone I work with is coming up to me and suggesting disability. I am very confused, depressed and scared. Has anyone else experienced CHF with HCM and/or is currently disabled because of these conditions.

    Thanks,
    Chuck [/b]

  • #2
    Chuck, hang in there. You will get a lot of response from others on the board. I am here to say that I hope you will find the answers and balance in your health that you need soon.

    Reenie
    Reenie

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

    Comment


    • #3
      Lets start at the top... Have you been evaluated by an HCM specialist? I know you had the ablation...however that is only going to reduce symptoms related to obstruction...meanwhile the rest of your heart still has HCM. There maybe some medications that may prove helpful to you.
      RE the CHF stats... do not panic...CHF is very managable but must be watched carefully.
      An evaluation by a specialist may prove very helpful.
      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


      • #4
        chf

        Dear Chuck,

        Please read the CHF thread whose link I can't find for you right now, but if you do a search for "CHF" (in this message board), you'll find it. It answers a lot of your questions.

        S

        Comment


        • #5
          Chuck, Sarah is right, we had a thread not long ago about CHF and HCM. You will get good info and hopefully some reassurance. It is important to remember as you seek info on CHF, it is usually presented in the context of how it relates to coronary artery disease or other causes and not as a consequence of HCM. CHF as a result of these other causes presents a different set of management problems. It can often be managed very well, and it is rapidly becoming the "flavor of the day" for current research studies. I expect treatment to be much more effective in the next few yrs, regardless of the cause and hope you are able to remain optimistic as you find the best treatment plan for you. If you haven't talked to Lisa at the office, please call her for info more specific to your needs. Best wishes, Linda

          Comment


          • #6
            Re: Congestive Heart Failure and HCM

            [/i]I TO HAVE HCM AND CHF. I WAS DIAGNOISED WITH HCM IN 1995. I WAS DEVASTED BUT I HAVE A VERY STRONG WILL AND ALOT OF FAITH. I WAS 35 AT THE TIME AND HAVE CHILDREN AND KNEW I WANTED TO BE THERE FOR THEM. I KNEW GOD WOULD BE WITH ME AND THAT IT WOULD BE HIS DECISION WHEN SOMETHING WOULD HAPPEN. BUT I WAS GOING TO BE AS STRONG WILLED AS I KNEW HOW TO BE. I STARTED OUT WITH 1 MED TOPROYL 50 MG A DAY. I AM NOW UP TO 200 MG A DAY AND 240 MG VERAPAMIL AND DIURETICS AND POTASSIUM AND A NITRO PATCH. I AM SORRY I AM WANDERING ANYWAY IN 2001 I HAD A KIDNEY STONE AND I NEEDED A STENT PUT IN. SAME DAY SURGURY YEAH RIGHT 3 DAYS LATER I WAKE FROM A COMA AFTER BEING ON A RESPIRATER. THIS HAPPENED ON A TUESDAY. FRIDAY OFF RESPIRATER. SATURDAY SENT HOME FROM ICU. 1 WEEK LATER BACK IN HOSPITAL WITH CONGESTIVE HEART FAILURE. I WAS READY TO GIVE UP. I WAS OUT OF WORK FOR 6 MONTHS BUT PULLED MY SELF TOGETHER I AM BACK TO WORK FULL TIME. I ADMIT I HAVE MY GOOD DAYS AND BAD ONES BUT I TRY TO BE REAL POSITIVE. I FEEL THAT IS SOMETIMES THE BEST MEDICINE

            Comment


            • #7
              Re: Congestive Heart Failure and HCM

              Tammy,
              What a story, I am sorry you had so much going on! It sounds like your on the right path now!
              Chuck,
              CHF in HCM is rather common...and treatable, while it may be a bit tricky to treat it...once a good balance is found it can be well managed.
              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


              • #8
                Re: Congestive Heart Failure and HCM

                Hello to all that replied to Chuck. I am his wife, Roxann. I don't mean to give bad news--or doomsday stuff, but, wanted to let you know--my sweetheart, Chuck, died on April 23 only 40 hours after surgery for a myectomy. The alcohol ablation he had done in January was only good for a couple of weeks. We opted for the myectomy--which went well. He died of a blood clot to the lung, so we will never know if the myectomy was a success--just wanted to let others know--
                If surgery is upcoming--make sure you make an issue if inactivity has been an issue. Hopefully, this will help others avoiding the tragedy I am facing.
                Thanks,
                Roxann

                Comment


                • #9
                  Re: Congestive Heart Failure and HCM

                  Roxann, I am so sorry aboout your loss of Chuck. I wish I could make to go away for you. I have seen my sister-in-law go through the samething that you now have to go through. We lost my brother to HCM in 2001.

                  Take care of yourself and try to think of the good times that you had together.
                  Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                  Comment


                  • #10
                    Re: Congestive Heart Failure and HCM

                    Roxann,
                    I am very sorry to hear about this tragic loss. I know you and your family are going through a very hard time and can not thank you enough for letting us know.
                    I am sending you a PM and hope to hear back from you.

                    To all those who read and responded to Chucks posting - - We have suffered a loss to. When we built this community we built relationships, friendships and opened our hearts to many. When you open your heart there is always the chance of having it hurt. I am hurting today as many of you are...we lost one of our own. The details of how and why do not much matter now, in time we may learn more details and then Chuck can teach us all better ways to protect ourselves.

                    Chuck in in my thoughts and prayers as is his family.

                    God Bless Chuck,

                    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: Congestive Heart Failure and HCM

                      Roxann,
                      I am so sorry to hear of your loss. I lost my father due to HCM complications a few years ago. Take care....you and your family will be in my prayers
                      \"It is not length of life, but depth of life.\"

                      Ralph Waldo Emerson

                      Comment


                      • #12
                        Re: Congestive Heart Failure and HCM

                        Roxann, I am so sorry. It is kind of you to think of how this tragic news would affect us. I hope the messages from our members will in some small way, provide comfort to you. You are in our thoughts and prayers. Please check back with us to let us know how you all are doing. Linda

                        Comment


                        • #13
                          Re: Congestive Heart Failure and HCM

                          Roxann, I'm very sorry to hear about your loss. Thank you for coming back to us to let us know so we weren't worried about him.

                          Reenie
                          Reenie

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

                          Comment


                          • #14
                            Re: Congestive Heart Failure and HCM

                            Roxanne, I am so sorry to hear of Chucks death. I had been following his posts here on the board. Please know that you and your family are in my prayers.
                            Midge

                            Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                            ICD&Pacemaker 1996
                            Heart transplant March 19, 2004 @ Mayo Rochester
                            Mom of Kaye.

                            Comment


                            • #15
                              Re: Congestive Heart Failure and HCM

                              Roxanne, I am so sorry to hear of Chucks death. I had been following his posts here on the board. Please know that you and your family are in my prayers.
                              Midge

                              Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                              ICD&Pacemaker 1996
                              Heart transplant March 19, 2004 @ Mayo Rochester
                              Mom of Kaye.

                              Comment

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