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Remember to inhale and exhale take it as it comes live 42day


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  • Remember to inhale and exhale take it as it comes live 42day

    Hi everyone. Well I have left a few other messages on this board lately about me not being able to breathe well at night and having to prop up my pillows. I emailed my Doctor in Boston at Brigham and womans hospital thinking he wouldn't answer me till tuesday due to the holiday weekend. But boom he answered me on monday. He said my symptoms are serious and Now I have an appointment with him next monday. I had an appointment with my local cardiologist today and they started me on lasex 20 mg. They don't see any swelling in the ankles but they are doing it as precautionary.My doctor At Brigham is considering about listing me for a heart transplant of course it needs to be approved by a number of different doctors before this occurs. But now I am taking matters into my hands. Nothing is etched in stone here. But let me commend Brigham and women's hospital and Portsmouth hospital because they are great facilities and have great Doctors.I guess I am just getting scared. It's normal.
    I have nonobstructive cardiomyopathy My dad's mom died from heart failure when he was 14. And almost all of his brothers died from congestive heart failure. My half brother had a stroke then a heart transplant and my dad had a heart transplant.My cousin had a heart transplant and she passed away. I have an Icd and My friends sometimes call me a bionic woman lol. I am still trying to be but with all things thrown at me sometimes it is hard. I am going to try to see if I can get an appointment with NEMC if I can get a reference then let all my cardiac doctors talk. I am so scared. Thanks for all your support. God bless you all and thank you lisa for creating this group.I had a stress exercise bike test a few weeks ago and my oxygen was less than normal that is what worries my doctors too so that's another reason for consideration of listing me also.

    Kimberly K. Plaster

  • #2
    Re: Remember to inhale and exhale take it as it comes live 4

    Dear Kimberly,
    I’m sorry to hear of your problems, and you are absolutely right to act now. Of course getting upset doesn’t help anything, but to tell the truth I can’t see how that kind of situation wouldn’t make you upset.

    I think it’s a smart move on your part to seek a second opinion from NEMC. If you need some help getting set-up there I’m sure Lisa could help you a lot. IM her and set a time you two can talk.

    All my best wishes go with you,


    • #3
      Re: Remember to inhale and exhale take it as it comes live 4

      Kimberly, I'll be thinking about you and I hope you can get some real answers on Monday.


      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.


      • #4
        Re: Remember to inhale and exhale take it as it comes live 4


        I'm very sorry to hear that you have not been feeling so well lately. I think going to see an HCM specialist at the NEMC is a great idea for you, and that you will find a whole lot of peace of mind there. Please keep us posted as to how you are doing and what you find out. Hang in there! We'll be thinking of you here.

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


        • #5
          Re: Remember to inhale and exhale take it as it comes live 4

          Kim, the very best of luck to you.
          Know that there are many people here rooting that you have a positive outcome.
          Keep us informed.
          Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
          So if you are capable of thought then you are capable of great things
          Good luck and stay well.


          • #6
            Re: Remember to inhale and exhale take it as it comes live 4

            Kimberly it is tough what you are going through . I hope you get some good answers in Boston on Monday. 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


            • #7
              Re: Remember to inhale and exhale take it as it comes live 4


              That's a lot of pressure. Anyone would feel it, so don't apologize. We are all hoping for an easier solution for you, but if not, we will be there to support you if you have a transplant.



              • #8
                Re: Remember to inhale and exhale take it as it comes live 4

                Good luck at NEMC if that's where you do go. That's where I go, and they are the very best there! You will be in great hands.
                We all understand your stress.
                Keep us posted.


                • #9
                  Re: Remember to inhale and exhale take it as it comes live 4

                  Please let us now how you make out. I have been experiencing similar symptoms at night. In fact about a week and ˝ ago my wife took me into the ER and I was admitted overnight.

                  Like you I have non obstructive HCM, but I also have mild asthma. During my recent admission, I saw both cardiology and pulmonolgy with no real answers from either one except that the Pulmonary guy said it sounded cardiac, and the cardiologist said it sounded like Asthma

                  Drop me a or and let me know how you make out

                  Best of luck to you.