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An Update

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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • #1

    An Update

    I'm still waiting to see the transplant team, My Cardio doc is still waiting on a letter from Dr Maron or one of the docs from the team, which i hope is soon, i'm ready to get this all over with, but with a little good news i have managed to get some of this fluid off 8 pounds in 24 hours but it has taken 160 mg of lasix and 100 mg of aldactone to do it but i do feel a little better as far as breathing goes but my energy is zapped, i hope i get some news soon, but i'm going to keep working on the weight so maybe i can get back down in weighti would like to get back to what i use to weigh before all this took place


    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
    Tags: None
  • #2
    Re: An Update

    I'm glad at least some things are looking up for you. Hang in there.

    Reenie
    Reenie

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

    Comment

    • #3
      Re: An Update

      Hang in there Shirley, you sound about as positive as one can sound under these circumstances.
      Lets hope for some positive action soon.
      Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
      So if you are capable of thought then you are capable of great things
      Good luck and stay well.
      Glen

      Comment

      • #4
        Re: An Update

        Hi Shirley

        Oh, I hope you hear something very soon. Is there a way you can call Dr. Maron's office to see what the progress is on the letter?
        If it were me, I'd be on him like a coyote on a rabbit.

        But I am glad to hear about the fluid loss. I'm glad you feel better regarding that. Although I'm sorry to hear you are so tired.
        I think about you and pray for you everyday.

        I have an idea, if you want, give me Dr. Maron's number, I'll call him and I'll keep calling.........

        Please keep us posted.

        Big Hugs -- Eileen
        49 yrs. old
        Diagnosed at 31.
        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
        My brother passed away suddenly at 34 yrs old from HCM.
        2 teenage children, ages 17 and 15.

        Comment

        • #5
          Re: An Update

          Another step closer

          I got a call from the doctor's office today and i had an appt on Dec 7th at 2:30 pm and i'm seeing the doctor that put my ICD in, he is part of our local transplant team, and Dr. Maron seems to know of them, I'm seeing Dr. Herre, i hope this wil get better so i can someday go back to work, i really miss it and i would like to help my husband out a little, i just feel so useless anymore, you know is the first time i have not worked since we got married and i worry about Ken too he has Chronic atrial Fib and high blood pressure and he shouldn't be working like he is. but says he has to and keeps telling me not to worry but easier said then done you know, well enough of my pitty party just wanted to let people know

          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
            Re: An Update

            Shirley
            Glad to hear things are moving along, finally. I know about not working, I thought I'd be glad when the time came ( I guess you are only glad when you choose the time, not your health!), but when my Cardio told me last winter "times up-you're done working" I wasn't happy either.
            Getting rid of some fluid, does feel good, it's much easier to breathe. I went into CHF, 2 weeks ago, called my Cardio, he told me to cme right in. He gave me 1000mg IV of Lasix- It took 2 days to get rid of the fluid, but I felt so much better! I'm taking Bumex, orally, for the last year (lasix stopped working) I'm up to 12mg, which I'm told is equal to 800mg of Lasix daily. Since the IV intervention I feel as if the fluid is under control, for the time being. It's a fine line to dose the diuretics & manage it properly, but maybe you need more.
            RONNIE

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            • #7
              Re: An Update

              Shirley ,

              You are on my mind and I know it is very hard to live with all the limitations you have . But of course for now there is no other choice. Just try to keep focusing away from this limbo kind of time as much as you can. Feel free to unload on us any time , it probably goes a long way to just unburden yourself of the stress. The build up can ware a person down. Don't worry we can take it. Lots of shoulders to go around for you. Keep that future in your mind , a new heart and girl you will take the world by storm. That day will come , I have faith for you.

              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

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