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NO ENERGY and not sure where to go from here?


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Dearly Departed
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  • NO ENERGY and not sure where to go from here?

    To whoever cares,

    You all know that I'm waiting for transplant at a stage 2 for the last 8 months now. In the last 1-2 months I feel like total crap. I have no every at all. I can barely walk to the bathroom w/o being sob and then not having any energy for anything else. I gained about anther 10 pounds of fluid and I'm trying to get that off. I'm tired physically and emotionally. I'm grouchy and can't stand to be around noise just no patience. I cry when I get to the point I feel like I can't go on. My husband said I'm sleeping about 16hrs and more each day. I feel like i'm choking sometimes and cough some. I can not take my own shower anymore, my husband has to help me then I'm done for the count. I'm frustrated because I hate feeling this way and there's nothing else they can do for me. I know God has a heart for me but feeling this horrible is so hard for me. Please I'm begging everyone pray that my new heart comes asap and pray for the donor family that they be Christ filled and for God to wrap his loving arms around them so that they feel peace. Thanks for listening.


  • #2

    I just know you are going to get your heart soon, have you called and told your doctor about the change, if not i would so they can maybe get things moving for you, i will be praying for you to get your new heart

    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
      Beverly, I pray that your wait is short and that you are as comfortable as possible in the meantime. I do hope that your waiting is over very soon.


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


      • #4
        Beverly my heart reaches out to you and you are in my prayers to get this beautiful health giving heart as soon as possible.

        Have you considered getting the visiting nurse in and a home health aid to help do some of these things for you. Please discuss your increase in limitations and consider the help. I know that most insurances will provide this benefit of assistance for a period of time and need. It may be good for you and your husband to have someone from the outside step in and help . This way there may be more quality time for the 2 of you without having to have some of it focus be on care. You know what I mean.

        Again I wish there were a way to get you to the transplant faster.

        Holding you in thought and prayer.

        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


        • #5
          We care very much. I am sending all my prayers and good wishes to you. You are an amazing lady who has great inner strength - hang on a little longer my dear friend. Make sure you contact your doctor and let them know how you are feeling you may get bumped up on the list if your condition has changed.

          Sending lots of good wishes and love,
          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)


          • #6
            Hi Beverly,
            I kinda have an idea of how you feel. It’s for different reasons, but I too get SOB just getting out of a chair. I have a seat in the shower because I can’t stand that long, my feet and legs up to the hips are full of water and painful, my lower back is excruciating and so is my left kidney. My hands are swollen so that I can no longer make a fist, and my thumbs are also painful. Yesterday I had a headache so bad that I’m almost positive that I had yet another stroke (my MRI showed I’ve had dozens of them – in fact today I got yet another medication to hopefully control them.) I now walk with a cane or use a scooter. I have a pain patch, and also pop narcotic pain killers more and more frequently.

            All this has led me to a conclusion. I am seventy two years old and have many ailments. I honestly do not know how much longer I have left to live, but I value every day of that time. I plan on getting as much help as I can, but I will live and enjoy every day the good lord awards me. They are much too precious to waste.

            You are going through **** right now – and I know just how bad it can be – but someday you will get a new heart and another chance at ‘the good life.’ Sure, you will always have things to contend with, but these are the days that will mold you into the best person you possibly can be – for the rest of what will probably be a long and happy life. Hang in there kiddo, hang in there. The best is yet to be.


            • #7

              Hi dear. I know what it is like to be limited, it is the pits.

              I struggle everyday. I'm at class III/IV heart failure. And on the days that it is class IV, it is rough, I cannot get out of bed (the 02 helps though).

              Some days I am very depressed. I feel trapped inside a body that just cannot do what it used to be able to. That God for anti-depressants.

              There is so much stess in my family because of this too.

              I'm so sorry you are going through this. It is so unfair.

              I pray that you get a new healthy heart very soon.


              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.


              • #8
                Sending you caring thoughts and hope

                Dear Beverely,
                I am sorry that you are going through this difficult time and I hope you feel better soon. I know how you feel about getting the heart. You and I are both waiting and we are in it for the long haul as are others here.I get frustrated too but I know there is hope and I try to take things day at a time. Have you ever thought about Keeping a journal? I keep one and write a lot.It helps me focus on things a lot.
                Just know this one thing. All of us who write on Hcma........(Thank you Lisa and God Bless you for creating this wonderful web site) are here to share and contribute our feelings and support for others. I try To keep my chin up and my friends and family help me with it too. One of my friends calls me a bionic heart warrior woman makes me I don't know you Beverely but I'm sure you have that power in you too.
                I send you my prayers that your heart comes soon and send you a warm hug. When all of us who are waiting on here get our hearts we will have to share our stories. God Bless everyone and to Beverely and The others who are waiting. Remember we are heart warriors and we will overcome this.
                Love and light and hope for all us,
                Kimberly K. Plaster


                • #9
                  Beverly, I am praying like crazy. This heart will come. I know it is such a worry. I do believe God has one for you. It was one year ago today that I received mine. Such a miraculous year it has been. I will keep you in my prayers as well as the family of your donor. They are the real heros in transplantation. Please if you have not done so contact your physicians or at the very least your transplant coordinator and let them know how you are feeling you may need a change in medicines. I will be in Rochester this next week but I will keep checking the board daily. God bless you.

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


                  • #10
                    To all of you, waiting for a Transplant, I pray for Strength for you to continue your wait a little more peacefully. To have the Faith that there will be a Heart for your soon. To have strong enough Belief in G-d, to know this will turn out, the way it should
                    Be Well


                    • #11

                      I must admit that, unlike others here on the board, i have NO idea what you must be going through or how you feel and i won't pretend to either. Please just know that there's not a soul here who is not constantly hoping and praying that a donor comes through for you soon. You've been through so much, and like Midge, i have a feeling that you'll be around for a very long time to help other folks like yourself go through this process.

                      You hang in there. Help is on the way.

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


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