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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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  • chf

    well i was told friday i'm in chf,,the dr. did that new BNP blood test, and it said i had CHF The dr. wants to put me on, something to make my heart stronger, my thought is , i'm afraid it will aggrivate my HOCM,being we already have strong hearts, and that's already a problem, my heart doesn't want to relax between beats, so the dr. is pacing me at 60. Has anyone encountered this before, need input
    thank 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

  • #2
    Re: chf

    Shirley, That new BNP blood test may not offer all to HCM patients that it promises to offer to other CHF patients with a different cause of failure. We're still learning a lot about it. If I'm understanding correctly, the baseline BNP in an individual with HCM may be higher than the currently accepted "normal range". Are you seeing an HCM specialist? Please try to call Lisa and talk personally with her about your situation. You are certainly wise to try to learn what all this means in your particular situation. Is this the first BNP you have had done? I'm sure some other folks will have some experience to offer with that test. Linda

    Comment


    • #3
      Re: chf

      Linda
      I'm going to find out monday what the actual number are, and that's the Question i'm going to ask is if it's not too elavated maybe it's just the disease causing this, i can't get my dr. to refer me to a HCM specialist and they have to with my insurance but working on it, i have talked to Lisa , about a specialist, she recommended Dr. Gilligan in Richmond Virginia, i may have to just pay for it myself, just to get some peace of mind, thank you for replying so soon
      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


      • #4
        Re: chf

        If your heart is not relaxing, then you need something to make it relax better, which is usually a beta-blocker. Are you on anything now? Perhaps the doctor meant stronger in the sense of better and not literally? Avoid digitalis and nitroglycerine, whatever you do.

        Keep us posted,

        S

        Comment


        • #5
          Re: chf

          Sarah
          i'm on toprol xl 200mg daily, i've got a call into the dr. to ask questions
          the nurse said he would call as soon as he could,the dr. wants to add this med to what i already take. Sarah thanks for writing me back, and giving me info on theother meds i need to avoid
          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: chf

            Sarah

            I finally got to talk to the dr. he put me on spironolactone 25mg,the paperwork for the med say it's for CHF it also has a diuretic in it . And my BNP number is 307.5. i'm so tired of the meds, I'm on 9 meds now and my cardiologist has me only on one of them the toprol xl, my family dr. has me on the rest. I have 2 for tryglycerides, one for stress,wellbutrin to help me quit smoking, altace for blood pressure, Ibuprofen for arthritiswhat they give me todayi'm missing one well it doesn't matter
            thank you for writing me back Take care
            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


            • #7
              Re: chf

              Shirley,

              Spirolactone is a diuretic. Unless we are really in CHF then it is usually not a good idea for HCMers to take diuretics regularly. They remove fluids from circulation & make the hypertrophic left ventricle work harder.

              (1) Have you discussed this and all your meds with your cardiologist? (2) Have you asked Dr. Gilligan's office if you can see him and arrange some realistic payment plan?

              I think you'll feel better once you do these two things. It's hard to be your own advocate, but necessary. Good luck in your efforts!
              Pat

              Comment


              • #8
                Re: chf

                Shirley,

                Are your doctors talking to each other about what you are taking? Ibuprofen is not recommended for HCM as it is opens up your blood vessels. Beta-blockers lower your bp, so your bp must be extraordinary or not responding to the toprol for you to be on altace as well.

                You will want to make sure you stay hydrated while on a diuretic (sounds funny, but true) and perhaps drink electrolyte water or take some supplements so you don't get out of whack.

                Take care,

                S

                Comment


                • #9
                  Re: chf

                  Sarah - Just one point of clarification re: ibuprofen. I think it is a vasoconstrictor, i.e. that it closes up the blood vessels...not a vasodilator.

                  My HCM specialist has me taking Advil to combat hypotension and presyncope especially for this reason. I can't take drugs that make my vessels dilate, otherwise I faint.

                  OK, that's it. Shirley is taking alot of drugs that could interact though, and I agree that she should have them checked out.
                  Daughter of Father with HCM
                  Diagnosed with HCM 1999.
                  Full term pregnancy - Son born 11/01
                  ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                  Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                  Comment


                  • #10
                    Re: chf

                    Dear Cyn,

                    Yeah, thanks for clarifying that. The ibuprofen could be pushing the bp up and the other drugs are trying to put it down and the other stuff is doing who-knows-what else.

                    All those vaso-thingies!

                    Anyway, I hope Shirley is able to get things sorted out. S, you may want to ask your pharmacist to look over all your meds for you, too. They are sometimes better at cross-checking interactions b/c that is a lot of their job.

                    take care,
                    S

                    Comment


                    • #11
                      Re: chf

                      Just a reminder there are some of us that are unconventionally treated! I am one of them as usual. I was put on Isordil which is a long acting nitrate to combat my chest pain and it helps quite a bit. Part of the reason though is that I have small arterioles. I am also on verapamil, k-dur, and lasix. My BP is horribly low because all of these lower blood pressure. Keeping properly hydrated is a never ending battle like Sara said. I am having a horrible time keeping my potassium levels up! Just remember that the saying is true "we are all different" so what works for me may not work for the next person.

                      Of course when my local cardiologist recommended these approaches I did my research and made sure he got the blessing from NEMC before we started! They even admitted I was a bit unusual. And Lisa I know you are going to rib me for that one .

                      Mary S.

                      Comment


                      • #12
                        Re: chf

                        I am taking 25 mg of Spirolacton also, while it is a diuretic it does not deplete your potassium like Lasix, The spiro actually spikes your potassium and with me also on Lasix it keeps my potassium balanced out. Since I am in Restrictive phase of HCM now thus the need for the unconventional medicine. Hope this helps some, I do also reccomend the HCM specialist for you. good luck.
                        Midge

                        Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                        ICD&Pacemaker 1996
                        Heart transplant March 19, 2004 @ Mayo Rochester
                        Mom of Kaye.

                        Comment


                        • #13
                          Re: chf

                          Midge

                          i have a question for you, when you walk does your legs ache mine does and sometimes i don't think my legs are going to hold me, the dr. tells me it's just the fact i'm out of shape, i try to walk alot, i'm active maybe not as much as i used to be. have you had the bnp test, mine was 307.5 not too bad, i would have rather seen it below 100, with HOCM i don't think so
                          and the tickle in my throat drives me crazy at times, and my hands and feet go numb also. you know i was wondering if i'm not on too much meds and it is hurting me more than helping me. As far as seeing a specialist, i want to but my insurance company wants a referral and neither one of my dr.s will give me one. i will probably see this dr. Gillagan in Richmond Virginia, but i will have to save my money and pay cash for it. There are alot of quetion that hasn't been answered for me and these dr.s are not helping much just confusing me, i shouldn't be more tired than i was before i started all these meds, I think between toprol xl 200 mg, Altace2.5 mg, spiro 25mg, it is just wiping me out, i think i'm going to call my cardiologist. the only one he put me on wasthe Toprol. well thank for letting me ramble on , i just get very confused
                          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


                          • #14
                            Re: chf

                            It seems to me that your Doctors should give you the referral to an HCM Doctor if they do not consider themselves well versed in the condition. I know HMOs are difficult, but it is up to us to push them when they attempt to save money on us------- Point out to them that ordinary treatments for heart conditions can harm someone with HCM and ask them if they really want to deal with this responsibility on their own. If they are not willing to assume this liability, they should be happy to share the responsibility with a more qualified expert.

                            Just my 2 cents----------

                            Comment


                            • #15
                              Re: chf

                              Shirley, Call your cardiologist. One of the side effects listed for Altace is "persistent dry cough". This could be the problem with your throat, and it's not yet quite a cough. It is one of the more common side effects of Ace Inhibitors. Linda

                              Comment

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