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Lisa Salberg Find out more about Lisa Salberg
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  • Coming SOON!

    The HCMA message board will be adding a new "room" shortly. It will be for "Transplants - Pre and Post". Our dear friend Midge has agreed to be a moderator of this new section! Keep your eyes on the board in the next few days for the roll out of this new area!

    Thank you to Midge who has stepped up to the plate to help those heading down the same road she has!

    Best to all!
    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)

  • #2
    Thank you, Midge. You are such an inspiration to others who are looking down the transplant path!

    Reenie
    Reenie

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

    Comment


    • #3
      Thank You Midge

      I look forward to talking with you and with my upcoming transplant i'm sure i will have tons of questions


      Shirley
      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

      Comment


      • #4
        I will be going to St. Mary's hospital February 24 & 25 at which time I will have a consultation with transplant people.

        My cardiologist has been asking me for over a year to just talk to them. She sees that in the near future I will need a transplant.

        I try not to think of it because I have heard so many negative things about heart transplants, but I have been convinced to talk to these people and be added to the list. If I decide I don't want it, I will just say no. Who knows what my final decision will be.

        Thanks Madge
        Esther

        Comment


        • #5
          Well i just wish mine would just talk about a transplant with me he just keeps running tests and he is part of our transplant team, he takes care of the heart failure end of iti just don't know what he is doing, now they want to switch around my meds is this common before you go on the list, or is he just stalling on me i don't know and i think this is really getting to me and now my primary Doc wants to switch cholesterol meds he is taking me off the zocor and putting me on Niaspan 500mg and i think i read that is not a med recommended before a transplant, i think before i get it filled i will call the cardio doc and ask, I hope all is well and everyone is having a great weekend

          Shirley
          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

          Comment


          • #6
            Hi Shirley
            My cardiologist told me that just because I would be put on a transplant list, it doesn't mean I need it right away. She has been changing meds and changing doses of meds I am on to help my heart function better. I am on so many heart and fluid medications that sometimes one is counteracting another. I was on 12.5 mg. Aldoctone daily and 160 mg. Lasix daily. My blood pressure went way down (69/42), but I was not in heart failure for awhile. So, my cardiologist changed my dose of Aldoctone to 1/2 of the original dose and my Lasix to 80 mg. a day. Now I am waiting to see if I go into heart failure.

            I know my cardiologist said there is another med I can try, but she is a little hesitant.

            My family doctor told me he is surprise I can do as much as I can. I am determined to keep going as long as I can without saying "I quit".

            I hope you find answers to your questions. I often feel that I don't know which way to turn for the right answer.

            Take care
            Esther

            Comment


            • #7
              Angall

              I know exactly how you feel I take 50mg of aldactone twice a day and 80 mg of lasix twice a day and i 've been on bumex and lasix and aldactone at the same time and then he tried verapamil and it tore me up so now i'm back on Diltiazem, but in the beginning of all this i was taking toprol xl 200 mg a day so i know exactly what you mean, i do have heart failure he said i had moderate to severe heart failure

              I don't know how people keep going sometimes it is all i can do is to get up in the morning and believe me i make myself do that, i look in the mirror and i just don't know myself anymore, i hope you are well, i hope you don't get this heart failure it sucks

              Shirley
              Diagnosed 2003
              Myectomy 2-23-2004
              Husband: Ken
              Son: John diagnosed 2004
              Daughter: Janet (free of HCM)

              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

              Comment


              • #8
                Hi Shirley

                I've been hospitalized 3 times with heart failure. The first time I gained almost 30 pounds. My doctors kept trying to increase Lasix orally, but I ended up in the hospital with IV Lasix because taking Lasix orally wasn't helping. The two other times I was hospitalized I didn't gain as much weight, but I was headed in that direction.

                Do you work outside your home? There some weeks where at least two out of 5 days I don't go because either I am in heart failure & it is such a task to walk or I have fast and/or hard heart beats. I have been fortunate that my boss hasn't fired me yet from missing so much time.

                I try to remember that there are so many people in this world that are suffering from cancer, etc. or a more painful illness. Therefore, I should be thankful, but darn it, I still worry about the future.

                Thank you for your thoughts, it does help to know that there are others that have the same worries about "what's next". Is this the best way to go?

                Take care and try to do like I do, "Look for a better tomorrow".
                Esther

                Comment


                • #9
                  I think this is a wonderfull new addition to the site. The forum for transplants pre and post will serve as a tremendous asset and benefit to those who are going through this process. Thank you Lisa for adding it and thank you Midge for stepping up to the plate and helping in one more wonderull way.

                  It is a process that has so many parameters and the support and education can only serve to soften the hard reality of the seriousness of this progressive course that some unfortunately travel to. When someone we know and care about travels through this area of intervention it can only benefit us all to learn and know what to expect.

                  Best to all.

                  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

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