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diuretics and HCM dehydration

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  • #1

    diuretics and HCM dehydration

    Hi everyone,

    I need to call my doctor about getting a prescription for diuretics. But, I am concerned about dehydration and loss of potassium.

    I know that the HCM heart cannot get dehydrated.

    Also, I think I am allergic to sulfur, so I think Lasix is not a good option for me.

    Any advice or suggestions are greatly appreciated.

    Thank you

    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.
    Tags: None
  • #2
    Eileen

    There are other drugs don't have the sulfa or that don't deplete the potassiumlike lasix talk with your doctor he would know which ones are safer for you

    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

    • #3
      Eileen,
      If I recall correctly Jim (mtlieb) is allergic to sulphur and had some concerns about his doctor putting him on Lasix. As it turned out he did not get a reaction from the lasix that he got from all the other sulphur drugs he had tried previously. When he checks the board I expect he could give you a more detailed explanation.

      As far as depleting the potassium, Lasix does to some extent, but nowhere near what some others do. When I was on a high dose, I also took a potassium supplement. I’m on 40mg now, with no supplement and the blood tests show that I am maintaining a good potassium level.

      There are also other diuretics which may be suited to your use, but I think with HCM patients Lasix is the number one choice. Discuss it with your doctor, and whichever one you decide upon, make sure you know the good and bad side effects and what to do if you have a reaction yourself.

      I expect that this is almost as clear as mud, but all drugs have side effects – some good, some not so good. Before taking any drug you should know what to expect, what to watch out for, and what if anything to do about any reaction you might encounter.
      Burt

      Comment

      • #4
        Hi Eileen,

        Burton is correct... i have a pretty severe allergic reaction to sulfa drugs so i was a bit concerned about taking Lasix. Dr. Lever explained to me however that people with sulfa allergies rarely have a problem with Lasix, and this has been the case with me also. No problems whatsoever.

        If you are as concerned about it as i was, you could get the prescription filled and then go to your doctor's office and take the first dose right there in the waiting room. I've done that in the past with various antibiotics, since i am starting to develop allergies to many of them as well. I didn't make an appointment... i just walked in and explained to the the nurse why i was there, and that i would let them know if i was experiencing any difficulty. Anytime i've had a bad reaction, it's always happened in twenty minutes or less, and i had to get a shot of epinephrine pretty quick.

        As for the potassium, they won't prescribe you Lasix without giving you a Potassium supplement as well. For me, it was 20meq of Pottasium for every 40mg of Lasix. That worked well for me, and i also made sure not to get any 'extra' potassium while i was taking the pills. Too much is just as bad, if not worse, than not enough.

        I hope you get these issues sorted out and get to feeling better very soon! I haven't needed to take any diuretics for quite a while now, and i believe my myectomy tidied up that situation for me quite nicely.

        Take care,

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

        Comment

        • #5
          Thank you everyone, I appreciate your information.

          I've been really tired lately. I called the doctor yesterday and I am still waiting to hear from her. (I have an appointment with a new cardiologist on JaN. 12, I hope this doctor will be more pro-active with my care.)

          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

          • #6
            Eileen,
            give me a call. Obstruction and CHF is a tricky combo. Lets talk about this.

            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

            • #7
              Oh okay Lisa, I will call you maybe on Tuesday Jan. 11.

              I have an appointment to see a new cardiologist on Wednesday the 12. Maybe I can get some better help. But I would now like to talk to you first.

              Thank you Lisa.
              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

              • #8
                And thank you to everyone for the information. I sincerely appreciate all of your time and help.


                Hugs to All

                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

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