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James Visit at Transplant Clinic today.

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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
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  • James Visit at Transplant Clinic today.

    So we went to the clinic this morning at Egleston. I was very frustrated cause his doctor still had not talked to Dr. Maron. They had been playing phone tag since yesterday and haven't been able to communicate yet which makes me mad since I had called three times in the last two weeks to make he called Dr. Maron.

    James had lost more weight again today. James told him about still throwing up. He said today that throwing up is usually only seen in severe heart failure which he feels James is not. However when we saw him in December he said that James' vomiting was contributed to his heart failure.

    Dr. Mahle mentioned that James' had a BNP blood test back in March. I had never heard of that before. I guess it measures heart failure in patients. James' was 129 then and they checked it again today. Under 100 is normal. 100-300 means heart failure exist and over 300 is more serious from what I understand. I wander if anyone here had ever had that test done. I asked if he would do a heart cath and the way he talked the BNP shows what the heart cath would, which does not make sense at all to me. Dr. Maron had mentioned doing a heart cath and a Vo2 and consider going ahead and listing if he continues to lose weight. But Dr. Mahle was like just come back in 2-3 months. They are suppose to call me with the results from his blood work today.

    When they did the echo it came out to 38% one way and 44 another. When they had done it in March it was high 40s. My gut says something is just not right and I am frustrated. I see how James is everyday and it just really concerns me. I did email Dr. Maron letting him know what we found out today and get his input.

    So I guess I am trying to figure out when the EF is low should the BNP blood test be way up. Are the two related? I am just trying to figure this out and make sense and proactive where James is concerned. I don't want any mistakes or problems keep him from getting the care he needs.

    Thanks for your input. Janet
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    Re: James Visit at Transplant Clinic today.

    Janet,

    Sorry to hear that James is having such a tough time. Even worse is that you cannot get the attention of the doctors. If your insurance allows, you might consider using Dr. Maron as the primary cardiologist, not just as a referral. You will get much better treatment from him no matter how busy he is.

    BNP is a chemical secreted by the ventricles in response to pressure in the heart. EJ is Ejection Fraction, the percentage of the blood that is ejected at each beat. If the heart is thick and inflexible or if there is an obstruction pressures will rise, BNP will go up, and EJ will go down. So to answer your question, EJ and BNP are inversely related, but they measure different aspects of the same problem. I also recall reading that BNP does not measure heart failure in HCM as accurately as it does in heart failure due to coronary artery disease and other more common modes.

    Bob

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    • #3
      Re: James Visit at Transplant Clinic today.

      Bob has given you the info on EF and BNP .. not always relative w/ regards to HCM people. Have they considered doing an endoscopic look down his esophagus.. It sounds like something else may be acting up and causing this vomiting. I would have him seen by a gastroenterologist if this has not been done lately. He could have developed ulcerations that may be contributing or causing the vomiting. When I get an ulcer which has been a recurring issue I always vomit. .. and this persists until the treatment heals the ulcer. If James has normal or near normal systolic function then his heart failure is diastolic and the EF may not be indicative of heart failure needing transplant. I would also follow up W/ Dr Maron and see if James can be seen at Boston Childrens Hospital... for an evaluation. Sorry that this has been ongoing and James is struggling.

      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

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      • #4
        Re: James Visit at Transplant Clinic today.

        Yes, if you search BNP in the archives on this board you will find that in HCM, BNP is a very unreliable indicator of heart failure.

        I know that my own BNP is often above 1000, which is off the charts high, yet, I am only in Stage I - II heart failure and would never been considered for a transplant with my symptoms that I currently have.

        There are others here who have normal or low BNPs who have much worse heart failure symptoms than I do but that is not indicated by their BNP.

        I agree with Bob. I would pursue the Dr. Maron angle as it really doesn't seem that your doctor is taking this very seriously.
        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.

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        • #5
          Re: James Visit at Transplant Clinic today.

          Janet,

          So sorry to hear that James is still having these problems.

          Just to back up what Cynthia and others have said, BNP is not always a reliable indicator of heart failure in HCM patients. I've had many recurring bouts of heart failure verified by chest x-ray and physical examination but my BNP rarely goes over 100. During my last bout of CHF it was only 52.6. It just doesn't seem to mean anything for a lot of us.

          I do hope you get some good news soon and James gets on the mend.

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

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          • #6
            Re: James Visit at Transplant Clinic today.

            I agree with the others and I too wonder if there is some way you can get back to see Dr. Maron and have him monitor James.
            Midge

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

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