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Im just curious

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  • Im just curious

    how many people here work with HOCM or those who have had the myectomy and are back to work???? My doctor still is very insistant that I dont go back to work. My obstruction is or was 1.7 after surgery this was at my last echo. He said very light exercise but nothing cardio other than walking. I still have mitral valve leakage also. I havent been diagnosed with CHF. Any thoughts?????
    Lana

  • #2
    Re: Im just curious

    Nearly every person I have spoken with who has had a myectomy has returned to there choosen profession. Some have gone back P/T due to general HCM symptoms or co-exsisting medical problems.

    It is very uncommon to have HCM and not be able to work, yet some people have significant symptoms regardless of obstruction.

    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


    • #3
      Re: Im just curious

      Ive been really frustrated with the fact that I feel no better than I did prior to surgery. Still very symptomatic, I dont want to go on a long list of what all is going on but I can just say I dont feel any different Im not sure what to do..........................
      Lana

      Comment


      • #4
        Re: Im just curious

        Dew Drop, I think that it's probably time to go see a specialist. I know that you see someone at Keesler, but I'm 99.9% sure he/she isn't a specialist. I completely understand how the military doctors work and how you need referrals to go elsewhere, but I think you have a strong case to take to your primary care doctor to go see someone else. Ask them about Dr Asher at the Cleveland Clinic in Florida. (Someone please correct me if I got that wrong!) He's knowledgeable and close enough to consider. There may be other good doctors too, you can ask Lisa, but just go see someone who really knows HCM.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: Im just curious

          Where did you have this done and how long ago?

          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


          • #6
            Re: Im just curious

            Besides Dr. Asher, I can't think of hardly any of our Florida folks having good luck with doctors.

            I super-second the motion to get to a specialist.

            Everyone is different, some people are totally disabled others hardly know they have HCM.

            What is your job and why does the doc think you can't do it?

            S

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            • #7
              Re: Im just curious

              I had the myectomy done Oct. 21st of last yr at UAB in Alabama by Dr. Pacifico. My work history has always been either waitressing, bartending, and the other job I had was in a lumber yard doing the filing and working outside loading materials and unloading. I have no education other than high school. All my jobs were strenuous physical jobs.
              Lana

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              • #8
                Re: Im just curious

                Hi Dew,
                You had your myectomy 6 days after I did.
                It is a tough call. I have been on disability since 2000. Athough in theory I would love to work, it would have to be something not very physical and certainly low stress.
                As someone who has a college degree , it is not easy that way either . When you consider the ramifications physically of direct care or dealing with the political emotional component of nursing work it could be a very difficult match. I have not wanted to likewise jeopardize my medicare status ,as once it ends if I could not do the work expected of me and meet the standard then medicare/disability would not consider this in their decision and reopen my case. I do have other medical problems as well as the HCM that factor into my disability. However a good mind is a terrible thing to waste so I keep trying to find that fit. If somehow my brain could be detached and utilized without it impacting on my health I would be right there.

                If it is disability that is recommended then prersonnally I say start the process. It can be very arduous and dissapointing to say the least if you get denied and if you get it, it does not solve all the problems . If you are a couple you can probably make it, if not I hope you have generous friends, neighbors , civic and religious support and family. Especially true if you have kids at home. Even at the rate I was earning prior to getting real sick , it does not meet the standard of living for someone in my situation.
                I wish you luck and hope that you can find a good second opinion on your heart problems because something does not seem right. You should have some improvement and reduction of symptoms following a myectomy. It appears that this may not be true for you.
                Keep us informed , we all can identify with your situation.
                Pam
                Dx @ 47 with HOCM & HF:11/00
                Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                Lead failure,replaced 12/06.
                SF lead recall:07,extracted leads and new device 2012
                [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                Genetic mutation 4/09, mother(d), brother, son, gene+
                Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                Comment


                • #9
                  Re: Im just curious

                  Dew,

                  I'm sorry that your myectomy doesn't appear to have alleviated your symptoms much. This does happen, but it is not the norm. When you say that your obstruction is 1.7 after surgery are you referring to your outflow gradient? If so, that's pretty darn good... about as close to normal as an HOCM'er can get. Mine is about the same right now. If you were speaking of something else entirely, then i apologize for misunderstanding.

                  I had my myectomy in June of this year and i am back to school full-time now... i am in week 12 of my recovery. For anyone who doesn't think school is just as exhausting as work, i'm carrying 18 graduate credits this semester, attending cardiac rehab after school three days a week, running across campus (late as always) to classes with a backpack full of books, and then spending three to four hours a night doing homework, plus weekends. I'm exhausted already and it's only the first week!

                  My point is... after my myectomy i reached a point where i felt like i had stopped improving, and some days i even felt like i was going backwards again. Now that i have started cardiac rehab finally and gotten back into the regular routine of schoolwork, i have begun to feel so much better again and find that i am improving by leaps and bounds. It's not my place to speculate, but i do hope that your doctor is not actually holding you back by not allowing you to return to your regular activities.

                  I agree with what the others have said... i think you should see a specialist.

                  Take care,

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

                  Comment


                  • #10
                    Re: Im just curious

                    thanks to all for the words of advice. Jim the 1.7 I was talking about was the septal wall thickness. Prior to surgery it was 2.4cm thick. I think one of my docs concerns is the number of episodes that I still experience. SO far Ive been on 4 different meds all together and my body does not agree with them. The first three I was even worse off than without. The time I was on tehm I dont remember, I refer to them as my zombie days. I really dont think the docs are keeping anything from me, but as for seeing other doctors, Im sure that there is a specialist close to us but I have to see who the military says I can. If the doctor is not in our "region" then it willn ot be paid for. Its a vicious circle, and with all of that said I couldnt afford to pay out of pocket at this time either. Dont get me wrong, Im not lazy by nature nor mentally. But if I do something for a few minutes my heartrate shoots through the roof and I feel lightheaded and very dizzy. It feels like my heart is going to pound its way out. I have to stop and slowly breath until it slows down. Gosh I hate to complain like this, but, Im glad this board is here knowing that there are other people who truly understand what Im going through.
                    Lana

                    Comment


                    • #11
                      Re: Im just curious

                      Hi Dew
                      I've had 2 myectomies and 1 ablation. I worked after each one. I use to work in a grocery store and go to school. Then I worked in a school district as one of the Superintendent's Secretaries' until I moved to Minnesota. I had my second ablation in November 2000 and found a job in an office as a Administrative Assistant 4 months later. I still work in that compacity. I have my good days and bad days, but my boss realizes how serious my condition is and we have an understanding that if I am not feeling well, I don't come into the office. Since I have used all my PT and my vacation time, I must take them off without pay. I have been so lucky that my boss just doesn't throw me out on my ear...lol.
                      If you need to go on disability, I would suggest starting the process. It may take you a long time. It took my brother, who had back surgery, years until he was finally approved.
                      Good luck
                      Esther

                      Comment


                      • #12
                        Re: Im just curious

                        Originally posted by dew_drop_2
                        Gosh I hate to complain like this, but, Im glad this board is here knowing that there are other people who truly understand what Im going through.
                        Don't feel bad about posting Dew... you're not complaining, you're just trying to understand and deal with a very tough situation. Many of us have been where you are now and we like to try and help each other through the tough times. Not so long ago i was in pretty bad shape myself, and the folks here helped me through it in a way that only a fellow HCM'er could. We'll get you through yours, too.

                        Take care,

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

                        Comment


                        • #13
                          Re: Im just curious

                          Originally posted by dew_drop_2
                          I really dont think the docs are keeping anything from me, but as for seeing other doctors, Im sure that there is a specialist close to us but I have to see who the military says I can. If the doctor is not in our "region" then it willn ot be paid for. Its a vicious circle, and with all of that said I couldnt afford to pay out of pocket at this time either.
                          I know just what you mean, but you CAN get good doctors. I dealt with military doctors for 15 years and still do to a degree. You CAN get good care. I promise. You need to talk to the PCM first. Get him on your side. Otherwise, call Tricare directly. I've gotten good service when I've called with real questions that I asked nicely. Please, try again.

                          Reenie
                          Reenie

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

                          Comment

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