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Having Congestive Heart Failure


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  • Having Congestive Heart Failure

    I've seen people expressing many times that people with HCM should drink, drink, drink.
    What does a person do that has Congestive Heart Failure and is limited to the amount of fluids he/she can consume?

  • #2
    Re: Having Congestive Heart Failure

    We have to start watching our fluid it is like a yoyo affect, some days i do drink more but i feel my body needs it, and other days i back off a little, the doctor has me on 2 liters a day and that includes all my liquids, so i drink bottled water and i also have a 2 liter bottle in my fridge and everytime i have a drink i pour that same amount out of the bottle it kinda help monitor your fluids I have left and right sided heart failure so i have to be careful

    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


    • #3
      Re: Having Congestive Heart Failure

      The water rule doesn't apply to those of us who have had CHF issues... we've already got plenty! A normal HCM'er (if any such person exists) wants to drink plenty of water to prevent dehydration (which is bad for an HCM heart). In addition, the lucky devils can have all the salt they want (in fact it is encouraged) and they would never ever consider taking a diuretic. Those of us with CHF issues however, are already retaining plenty of fluid in our bodies, so any extra is only going to put additional burden on our hearts. When you're in CHF... the special rules that apply to that (reduced fluid intake, salt restriction, diuretics) always take priority over those that a normal HCM'er would follow. We're just different creatures and follow a different set of rules.
      "Some days you're the dog... some days you're the hydrant."


      • #4
        Re: Having Congestive Heart Failure

        This thread brought an interesting thought process to me. I have been in CHF (several times) & have been on increasing doseages of diuretics for over 15 years. Most of my life I feel as if I just crawled out of the Dessert-I'm SO THIRSTY! This is a no win situation. Dry myself out with diuretics & then fill back up.

        I know I need the diuretics, when I skip a dose or lower the dosage, I can't breathe & my Cardio says my ears wiggle!

        Are others as thirsty as I am? What do you do? I had hoped the Myectomy would solve this problem, but it didn't.


        • #5
          Re: Having Congestive Heart Failure


          I had hoped my myectomy would clear up my CHF issues as well, but alas several weeks ago i began having all the same symptoms again... congested lungs, swollen feet, etc. I still remain hopeful that this is only temporary and will pass, but in the meantime i take my diuretics when i need to (like a good little boy), and hope that i can fit into my shoes the next morning.

          Being an HCM'er in CHF is an odd and complicated thing... you have to balance the fact that your HCM heart cannot tolerate being dehydrated, with the fact that you are already carrying an abundance of fluids that are putting an additional burden on you. I myself have been in and out of CHF for months now, and because of that... on certain days i follow the 'drink, drink, drink' rule, and on other days i have to measure my fluid intake pretty strictly.

          When you are in CHF, unfortunately your mouth will sometimes feel parched even when you know that you have already reached your daily quota of fluids. I don't know why this is, except that maybe your mouth is the last to figure out that you have already had enough? Try sucking on ice cubes or popsicles when your mouth gets that way. It doesn't add much to your fluid intake but helps to alleviate the feeling of being parched.

          Take care,

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


          • #6
            Re: Having Congestive Heart Failure

            Jim , This is exactly the way it is with our CHF. I think we all have a wee bit of it on a daily continuing basis simply because of the very dynamics of the HCM heart. At times it gets very out of control and becomes an acute episode. Managing it with the yoyo balance that Shirley mentioned in another post and taking the diuretics carefully and flexing the doseage really can help. On those very bad days we have to take it down quite a bit and get recumbent. BOY WHAT AN EXCUSE TO TAKE TIME OFF FROM WHATEVER. But it works and is necessary to nip it in the bud and try to avoid an all out acute exacerbation. I have one more point to make or piece of advise. IF you notice it early in the am start early with the plan of attack And make sure you are in a cool or cold place . The water gates should open once you get mother natures summer warmth under control ,take those diuretics and get those feet up and high. I have found that I also have to actually increase the fluid ;preferably water, intake in the beginning to start the transport system moving in the right direction.

            Do you relate to this and/or anyone else?

            Today I could hardly see straight and was so dizzy and almost drunk like . I realized too late that I was behind on the po fluid so took care of it fast. Thankfully avoided detrimental consequenses.

            You are Right Shirley ; a yoyo situation.

            Best to all.

            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


            • #7
              Re: Having Congestive Heart Failure

              A tight rope is one way of looking at it - you must not have too little fluid - however too much for some - well that can be trouble too!

              Water is always a good idea - sodium intake is an issue for those in CFH - diet is very important - maintain a well balanced diet with caution to prepared foods. Too much sodium and you are in trouble - as for those without CHF - a bit of sodium in ones diet is a good thing.

              Dont you wish there were a simple rule book for all of this!

              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)


              • #8
                Re: Having Congestive Heart Failure

                Pam brought up an interesting point that i've thought about often.... by having HCM, doesn't this mean that at least to some degree we all flirt with CHF from time to time? I've noticed quite a few posts over the past year from folks who say they retain fluid occasionally, especially when it's hot. Of course there are many other reasons why a person might retain fluid, but anyone who feels that theirs is HCM-related must by definition be experiencing congestive heart failure right? Even if only in isolated episodes. Lisa... you mentioned previously that you sometimes have fluid problems and have to take diuretics. Do you feel that it is HCM-related, and therefore what you are experiencing is an occasional bout of CHF?
                "Some days you're the dog... some days you're the hydrant."


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