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  • diuretics

    When are diuretics indicated in HOCM? I have a 10 pound weight gain in the past week with pitting edema in my calves and bloated abdomen. I feel stiff in all my joints. My lungs are clear. I am SOB but no more so than usual. I am on Norpace, Cardizem, and Atenolol. Saw the Nurse Practitioner at the cardiologist's office this morning. She is going to convey all this to my cardiologist and call me back this afternoon. I know that diuretics are used hesitantly in HOCM. Just wondering what determines when they are used, and if contraindicated, what else can be done to gwet this water off of me? Thanks.

  • #2
    Re: diuretics

    Sorry to hear you are sufferring with all that fluid, it can be miserable. I'm not sure what would prompt a Dr to perscribe diuretics. In my own situation, I was diagnosed about 15 years ago with IHSS (old Label) & my Cardiologist placed me on A daily diuretic (Hydrochlorathiazide) Over the years, fluid retention became a BIG PROBLEM-I was in & out of CHF several times. Ive talen the range of Loop Diuretics (Lasix etc) and now take a fairly high disage of Bumex daily. On days, I postpone my diuretics (due to needing to be places that would make it difficult to to constantly find a Ladies Room) I can see & feel my hands & feet swell by mid afternoon & find breathing a little more difficult. I think there are many HCMers who also take daily diuretics. I would definitely have a conversation with your Cardio ASAP & if I didn't like the answer, I'd have the conversation with another Cardio. Don't just suffer-you deserve Relief!


    • #3
      Re: diuretics

      Vickie I too have had a similar history of diuretic therapy and CHF like Ronnie. Old days prior to HCM dx was given the HCTZ for" hypertension", we now know it was HCM all along . Dr.'s can be reluctant to prescribe them. I see that you are in Florida so the hot times are upon us . Fluid retention swelling and bloating are particularly difficult in the warmer months . Our kidneys are getting mixed signals as the temperatures and climate vary from day to day and humidity plays a big role . It is best to stay with feet elevated, well hydrated and resting in a cool spot when these issues are at hand. If you are given the diuretics , it takes a carefull monitoring and ajustment, education curve to be able to manage them safely in conjunction with your HCM . It can be done and is for me the only help that really helps me manage my fluid and CHF. Unfortunately it sometimes takes an admission to a hospital or an ER visit followed by a chest x-ray , Dx :CHF for some docs to say : OK , we need to get this fluid off and rest this heart. As you may have read from some posts some docs won't even do it for HCMers when that happens. I had a visit to the PCP today for the severe pain in my joints, the stiffness being unbearable to realize I not only have to see a rhematologist but also that I need to up my Lasix for the 10 pounds of fluid I seem to have attracted this past week. So even when we manage these things we can still have that fluid sneak up on us very quickly in the warmer months. My thinking has lapsed and I was trying to pretend I was cured of all this after having a myectomy. BIG NOT! The reality of HCM stinks , but nonetheless it is ours to keep with all its multifaceted angles. Best to you and do talk candidly with your doctor. 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


      • #4
        Re: diuretics

        Please call the doctor directly ASAP. You need to get this fluid off of you.

        Be well,
        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)


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