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Aimee Find out more about Aimee
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  • Toprol XL

    Is anyone else at 400mg of Toprol XL ? It is tough to navigate somedays also with the lasix...get to dry and man oh man .... I feel like a wilting flower. I am maxed out on the meds and they are out of combinations to try. This is why I was put on the transplant list ..no more alleys to go down.
    Ag

  • #2
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    Aimee,

    I'm on 300mg of Toprol XL a day and it is all I can do to keep my head up sometimes from the fatique.

    I'm sorry you are having a hard time of it. Midge on the board had a successful transplant--you should PM her or read her posts.

    take care,

    S

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    • #3
      Aimee,

      I hear what you are saying , I take Atenolol 250mgs ( split dose) a day and only 40mgs of Lasix with a prn here and there also Dilitiazem XT 180mgs. On the cooler days I get dry real fast. I have to weigh myself frequently to make sure I am not losing too much too fast on those days. On warm days it is an entirely different story. All the while I have to maintain an adequate intake of po fluids or whammoo, I will hit the wall. It is a meticulous balancing act to say the least. By afternoon , I am usually useless to myself or anyone else, and often have difficulty remaining cognizant to the happenings around me. I get so cement like in my mobility and very short of breath then as well. My girth increases and , i feel like a beached whale on Cape Cod The fatigue is very , very,difficult as Sarah has already stated. I try to reduce my beta blocker , but then my heart rate goes up and keeps me up at night.

      I am sorry there are no easy answers or options here for you. I hope you get a new heart soon.

      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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      • #4
        Aimee-
        I hope a new Heart becomes available for you, very soon. I was on 400mg of Toprol for about 6 months & was a Zombie! I only take 200, now & by mid day I'm dragging still. It's the diuretics that get to me the most. I take 3 Bumex am & 3 pm-Ifeel like I've just crawled thru the Dessert! The worst is when I'm still fluid overloaded (like last nite) & I have to take 2 more as a "nitecap" how's that for a restful sleep? I take so many potassium pills too! I plan my days activities around the diuretics (location, location, location) & when I travel it gets iffy.
        Agai, good Luck!
        RONNIE

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        • #5
          I know the feeling guys and i'm waiting to go on the list but they say my VO2 has to be in the single digits to go on the list and i take 300mg of diltiazem and 160mg of lasix and 100mg of aldactone a day so i know what tired is and while taking care of my dad i was dragging

          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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          • #6
            Aimee,

            My wife Beverly (in her late 20's) is on the same dose of Beta blockers that you are but in a different combination. She takes 250mg of Toprol XL (time released) along with 150mg of Lopressor (exactly the same drug, just short acting). She was put on that combination because of the speed at which her body metobolizes medication. It was the only combination they've found that consistently keeps her resting heart rate below 130 (its now in the 80s and occasionally the 90s). Along with those meds she's on Aldactone 25mg, Lasix 80mg, Amiodarone 200mg, Lisinopril 15mg, and several other meds that I can't remember off the top of my head. Depending on the day she will sleep around 12 hours a day, so don't feel alone in being tired.

            My wife is also a pre-transplant patient and has been on the list in Minnesota since September. She stays as active as she can bear, walking a few steps here and there to keep her legs strong so that she can bounce back from the transplant as quickly as possible. One of the things that I've learned about the difference in the way the sub-specialties in cardiology deal with things is this - an HCM specialist wants to increase your quality of life as much as possible, while a transplant cardiologist wants to prolong it as long as possible. Thats why they take different approaches to med management, and one of the reasons why transplant docs will occasionally prescribe a medication or dosage that you wouldn't normally see in an HCM patient. Don't get me wrong, if you're completely miserable being so tired right now you should say something, but don't get too down. Your heart is coming soon just like Beverly's. They call it the "Big W" for a reason. The "wait" is the hardest part but won't last forever.

            Steve

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