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Did you have a good HCM day or a not so good HCM day?

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Lisa Salberg Find out more about Lisa Salberg
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  • #16
    Re: Did you have a good HCM day or a not so good HCM day?

    thanks linda
    One day at a time.

    Comment


    • #17
      Having good days since adjusted on different beta blockers.

      Shocking the wits out of people by jokingly taking salt toffees (in dutch we call it 'dubbelzoute drop', heavy salted 'sweets' together with lots of water (geez, with such salt you NEED lots of water) all the while announcing that a heart patient like me shouldn't do this

      Now i'm not in heart failure, so it doesn't mind (like Jim says, salt and water keeps the BP up), but it's rather amusing to gouge peoples reactions
      \"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.

      Comment


      • #18
        Re: Did you have a good HCM day or a not so good HCM day?

        So far, today has been a good day. I don't feel nearly as tired and have been able to do a few things in the house that have really needed done. I have a real sense of accomplishment! I'm not going to over-do it. Plan to read for a while and take a short nap.
        Sassy Deborah
        Diagnosed with HCM 2001 at age 52
        ICD implanted December 3, 2005
        Finally saw HCM Specialist (Dr Lever) Oct. 24,2008
        Myectomy performed at Cleveland Clinic Dec. 3,2008
        Father died at 26 (1952) suspected HCM

        Comment


        • #19
          Re: Did you have a good HCM day or a not so good HCM day?

          This is always a nice thread to see resurface from time to time. I have to admit though it's a little chilling to read Mike O'brien's comments above. He said he had a 'good day' but that most days he was 'waiting for the other shoe to drop'. And now he's gone. I can't help but wonder if there's something his docs (or us) could have done more for him.
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #20
            Re: Did you have a good HCM day or a not so good HCM day?

            Today is not a good day....I have been dealing with chest pains today and shortness of breath but coming here has made me feel better knowing I am not the only one. Thanks for a wonderful site.
            Smile and Enjoy Life no matter what!!!

            David

            Comment


            • #21
              Re: Did you have a good HCM day or a not so good HCM day?

              I don't seem to have many good days,it gets so tiring with my consistent chest pain and lack of energy. I have to drive myself to get anything done. But at least I'm sure I'm not alone! We all have to roll on.

              Comment


              • #22
                Re: Did you have a good HCM day or a not so good HCM day?

                As a measure of how good I am feeling, I usually compare it to before the ablation. In which case, I feel great. I know I still have physical limitations but in general every day is better than I felt before the Alcohol Septal Ablation. Like the other day, I wasn't quite over a tonsil infection before I started to get on the treadmill. My body told me to quit really quickly. But two weeks ago, I was feeling great after moderate exercise. All of this dealing with HOCM has made me a happier, stronger person. And I am not depressed anymore! I used to get depressed around the holidays..now I'm just happy to feel healthy!

                Comment


                • #23
                  Re: Did you have a good HCM day or a not so good HCM day?

                  I still am having good days. The only symptom that I seem to have is tiredness once in a while.
                  septal myectomy on Jan. 27, 2005

                  Comment


                  • #24
                    Re: Did you have a good HCM day or a not so good HCM day?

                    Hi, today I have had more symptoms than most of the time. It has been very cold -26° at my house today. I seem to have a lot more chest pain when it is cold and I am out side. Even just walking from the car to work. Then we had a potluck and I had to many carbs and just ate to much. I could not walk to far with out being out of breath. And I have been walking 3 time a week for an hour each time. ( round 31/2 miles each day) With out to much in the way of symptoms. This is the first time I have has this happen to me. I don't know if it is just because I am getting older or if it has something to do with the HCM. I just thought I would let you know.

                    I hope your Christmas and New Year are full of family and a lot of love.
                    Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                    Comment


                    • #25
                      Re: Did you have a good HCM day or a not so good HCM day?

                      Donna,
                      Your post was just what I needed today. I too seem to have more chest pain when it is cold. I'm only out in it (like you said) to go to and from work, but those are the days when I seem to have more chest pain. I also have it in the summer when it is too hot. Today, I ate a few more carbs than I should have and now I have that tight band around my chest and shortness of breath. It seems to take 4 to 6 hours for it to subside. Someday I will learn to stay clear away from the sugar, but I made a new sweet potato cassarole recipe and I had to taste it to make sure it turned out good. Ha!!

                      These are the symptoms I have a hard time accepting so it helps me to know others have them also.

                      Merry Christmas to all,
                      Marcie
                      Diagnosed with HCM 1999 at age 48
                      Septal Myectomy at Mayo Clinic 8/3/2001
                      Dr. Ommen and surgeon Dr. Dearaini

                      Comment


                      • #26
                        Re: Did you have a good HCM day or a not so good HCM day?

                        I'm glad I found this thread, I haven't felt good since 2003. My history is...in 1991 when I was diagnosed with HCM I was given Atenolol with which I developed shortness of breath, after one year I weaned myself off it and began feeling better. In 1993 I joined a health club and started exercising on a regular basis, I felt like my old self again.

                        In 2003 I started seeing the Veteran's Administration and was placed on Verapamil, after one year my Cardio Doc. added Atenolol to it and again I started having breathing problems. It reached a point where I had to quit the health club because I couldn't work-out more than 10 minutes without resting.

                        In 2005 I went back to work and found myself doing strenuous work outside in 90+ degree weather, it sent me to the Emergency Room twice, then I was fired. I have not worked since.

                        In January 2007 I had my Myectomy and a pacemaker installed because my heart beat kept dropping to 20 beats per minute. After the Myectomy, I was given 2 Verapamils (600 g) and my heart stopped.

                        I felt good for about 2 months, then gradually started slipping back to the chest pains, breathing problems, exhaustion, etc.

                        The VA says there is NOTHING wrong with me, I was also told by my Primary Doctor that he and my Cardio Doc. didn't think I had a problem until the Myectomy, which was done by Dr. Herbert Ward from the University of Minnesota.

                        Because I suffer from Post Traumatic Stress Disorder (PTSD) which cost me 3 marriages and 28 jobs in 36 working years, I have no insurance or retirement. I can not afford Medicare and the VA is my only protector, they care for me (as little as possible), but refuse to accept that I have any medical problems.

                        Based on all this information I think you can see why I RARELY feel good.

                        THANK YOU FOR LISTENING,
                        Bob
                        Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

                        Comment


                        • #27
                          Re: Did you have a good HCM day or a not so good HCM day?

                          Good thread. I am still getting used to HCM and I don't know all the ramifications. Today was a good day until about 5:00 PM when Ohio Sate got creamed...then I had chest pains and shortness of breath...hmmmm. I think this is not HCM.

                          Normally I feel good when seated or not too much activity. When I walk more than about 50 yards at a decent pace my hearts starts "jumping around" and shortly thereafter I'll get SOB.

                          My biggest problem right now is lack of stamina. I can do anything I used to do, but only for about 1/20th of the time. My good days simply mean I can get around just a little bit better than my worst days. I'm not in much pain, but don't ask me to walk fast or I'll not make it.

                          Just upped my Verapamil to 360MG per day....but I don't notice any great benefits right now.

                          Time will tell.
                          Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

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                          • #28
                            Re: Did you have a good HCM day or a not so good HCM day?

                            Today was OK. Not too bad...just a little SOB and got around OK. Didn't run a race, but that's OK. Some fluttering of the heart.....but less than normal.
                            Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

                            Comment


                            • #29
                              Re: Did you have a good HCM day or a not so good HCM day?

                              Not such a good day. Getting depressed about the nagging SOB & chest pains. Have spent the last 4 weeks fighting with my insurance co (actually my provider) to get my ICD installed, and its taking it tole. Getting tired of the beta blockers & the effect they have on me (dry skin, itchy hair, weight gain).

                              I know its stress too and stress ain't good. I'm usually a happy-go-lucky kind of guy & this "condition" has grabbed me by the shoulders and keeps spinning me around. I've been in denial and reading this board has helped me so much to understand this disease (thank you all). But with that knowledge comes the understanding that the life I once led, has changed, and its starting to sink in.

                              Oh well, thanks for allowing me to vent! I'll guess I'll pick myself up again and dust myself off and try to make a difference another day. Today is just not the day for me. Tomorrow may be better.
                              Marc
                              Diagnosed @ 48
                              Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                              Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                              AICD - Valentines Day '08, Spark Plug replaced 11/14
                              After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                              Quietly going insane . . .

                              Comment


                              • #30
                                Re: Did you have a good HCM day or a not so good HCM day?

                                Hi Marc:

                                Sorry about your day (on Jan 9th) .....I was in the same boat yesterday. I didn't feel good all day....just kind of blah and real tired of having to catch my breath when I exert my self in the least. Also "Negotiating" with my insurance company.....They first turned down coverage on my request to go to a specialist, saying "Isn't there some Doctor in Nevada who treats this disease" My Doc responded (to them) that there wasn't and that the disease is uncommon, "yada, yada". The initial response of the insurance company demonstrated to me is that they have no idea about HCM, what it is, who suffers from it and how it is diagnosed and treated. Maybe I'll educate them.....although this was never my goal in life (ie, to educate an insurance company). .

                                Yes, I can relate to realizing my life has changed. I am somewhat "special" (ha) in that I got 62 good years out of my heart until I got slammed last June, so for this I am forever greatful. However, that said......this sucks. I am very humbled when I see the young folks in HCMA who suffer from this.......What do they say "Out of adversity comes.........?" I don't know what comes out of adversity, but the youngsters give me a desire to keep on keeping on.

                                I hope today is better than Jan 9th was for you and I look forward to hooking up with you when I get out to UCLA (eventually)

                                Take care.

                                Doug
                                Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

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