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Lisa Salberg Find out more about Lisa Salberg
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  • Welcome to our new addition

    Welcome to our new section of the HCMA message board! Allow me to introduce you all to our new moderator Midge Rollins!

    Midge has been active on the message board since 2002. We have followed Midge through her pre transplant, transplant and thankfully post transplant. Midge has had the most wonderful attitude during the entire process and her spirit inspired us all during her journey.

    I asked Midge to tell us a little about herself so here is Midge in her own words:

    I am 58 yrs old. I was diagnosed at the age of 27-28 with IHSS (at that time). We now know that there is a strong family history. I have 2 children both HCM free (Thank God) so far. Paul is 35 and Kaye is 34. Jim, my spouse and best friend and I have 6 grandchildren (perfect ones of course). I started out my career as an x-ray technician. Later on moving on to manage Physicians office's. As my health failed Jim and I moved to Lake of the Ozark's for a 3-year vacation. It was wonderful and we will never regret the move. We moved back to Iowa as my heart continued to fail. My transplant was Mar. 19, 2004. I am working part time in a physical therapy office, I like to play bridge Mah Jongg, needle work, and love to be social and go to lunch or whatever. I am doing a lot of speaking for the Iowa Donor Network promoting organ donation. We are looking forward to doing some traveling now that I am HCM free and almost to my one-year anniversary.
    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
    heart transplant

    Midge welcome as our new moderator

    I just got off the phone with Lisa for a question I'm sure you can answer I'm getting very frustrated at my Doctor he isn't not telling me anything about a transplant, he says i will go on the list but that is all he has said and that my pressures are good i just have a gradient in the right ventricle which he has never said why, i just figured it to be because the ventricle is stiff, what is making it stiff, Midge would you please tell me what they do to get you on the list? i am going out of my mind with this if he is just pulling my chain then i will just go somewhere else, he is part of the transplant team here in Norfolk Virginia and a doctor that Dr. B. Maron Knows, so i want to believe he is a good doctor, thank you for any thing you could tell me

    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

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    • #3
      Thanks for the new forum! I'm glad we now have this place for our friends who need it. Midge, thank you for your time and knowledge going into this forum. I appreciate it!

      Reenie
      Reenie

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

      Comment


      • #4
        Hi Midge

        I, too, want to thank you for voluntering your time.

        You have been there, done that and for those of us that will be preparing for a transplant, there are going to be questions that will be running though our minds and what a better way to get advice than from an experienced source.

        I know I am hesitant to even be put on a list. Did you go through this, too?

        Again, thank you.
        Esther

        Comment


        • #5
          Shirley,

          I think it is a good idea to contact your local transplant center and ask to speak to a nurse in the program. I am sure they have an educational package to help you understand each step of the process.

          I will venture to guess that each transplant center will have slightly different procedures. I would also think that the process will difffer based on how serious the patients condition is at any given time.

          Midge can offer her point of view from experience - but please remember we are not here to give medical advise only to provide support and information.

          Best wishes,
          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
            You know Lisa

            I really never thought of calling them to find out info, it is a very good idea, I don't know what has been going on with me lately, i just can't think straight anymore and 2 years ago i would have already done it, I 'm really sorry for asking about information about this i do know that every hospital is different and i will give Norfolk General a call tomorrow and get the info

            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


            • #7
              Shirley, Lisa is right. Call Norfolk General. There should be a nurse coordinator that will give you all the information you should have regarding pre-transplant and post transplant. I would think she would be able to tell you if you are officially listed as of yet. If nothing else she can be the mediator between you and the Dr. especially if you and he are not always on the same wave link. Do not apologize for anything. It is a stressful time for you and believe me that sometimes causes short circuiting of our thoughts. Hang in there.
              Midge

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

              Comment


              • #8
                Esther, Yes I was nervous about being listed for a transplant. I was not really hesitant as there was not much other choice for me if I wanted to have a good quality of life. Hopefully, you have family that will be a strong support system for you. My husband would never tell me if I should do it he kept saying you are the one that has to go through it so he would support whatever I decided. Afterwards he said this is what he wanted me to do also. I would do it again in a heartbeat. (no pun intended) Let me know if there is ever a question I can help you with.
                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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