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Update on our son Jonathan

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Bert Find out more about Bert
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  • Update on our son Jonathan

    After much anticipation Jonathan had his big day at NEMC in Boston. It all started with a stress test with a nuclear tracer, followed by an echo, and then a cardiac MRI. Later that day we met with Dr. Udelson and Dr. Maron who incidently was very good about following Jonathan throughout the day. The good news was that Jonathan's echo was back to normal. The deconditioning for the past 4 months seems to have worked and needless to say we were elated as they told Jonathan that he' ll be back playing hockey some time soon.

    On the other hand, the stress test was abnormal and the MRI needs to be sent to another specialist who is "world renown" in evaluating MRI's. In any event, we left the clinic still hopeful given the fact that HCM had fallen off the radar screen because of his echo being normal, but that his issue of hypertension and the 2 other tests needed to be looked into and more than likely can be dealt with.

    All was well until we got a phone call from Dr. Maron 2 nights later. At this point he proceeded to tell us that Jonathan's case has proved to be a most challenging one, and that a cardiac catherization has to be the next step due to a septal perfusion defect on the nuclear stress test . You can imagine what kind of weekend we've had so far and the emotional rollercoaster that we're on. Dr. Maron felt awful as I can imagine it must have been a difficult call for him to make. Although, he told us to let Jonathan live a normal life and return to physical activities. Frankly, at this point he didn't need the green light as he was going to do it anyway. He's just about enough of all of this and has gone back to his daily run and played roller hockey for a good part of yesterday. Even if I wanted to he's a pretty tough little hockey player and I would be hard pressed to physically restrain him.

    So... It's back to Boston on May first for a cardiac catherization. I just hope I can get him in the car to head down there. He's at the end of his rope and I can't say I blame him. If you sense a tone of bitterness in my message, it's because my wife and I are also at the end of our ropes. We're both on anti-depressants and quite honestly they're not working all that well anymore. We're not angry at the docs as we're convinced that they're doing everything in the best interest of Jonathan. As a matter of fact, Dr. Maron has been tremendous with Jonathan and you can tell he genuinely cares for him. You can even tell that they have that certain bond that athletes tend to develop between one another.

    I guess at this point the only thing I question is if the echo was normal, and the stress test can have a likelyhood of false-positives and for that reason is not recommended for asymptomatic patients, then why didn't we do the echo first? As far as we all know on this board the echo is the way to go and from what I can understand HCM does not regress at all. Jonathan's numbers were upper normal to begin with and have since regressed even more. Also, the jury is out on using MRI's for HCM diagnosis and from what I've read it shouldn't replace the echo.

    If anyone can make any sense out of all this, please let me know. I'll always remember my father who was a publisher, telling me that if you don't tell editors to stop editing, they'll keep on editing. I often wonder if the same can't be applied to doctors...

    Sorry about the rambling on. I certainly do not mean to undermine anyone affected or involved with HCM, but Jonathan intends to live life the way he knows it and at this point I can't say I blame him. It's was great to see the bounce in his step for at least 2 days...

  • #2
    Re: Update on our son Jonathan

    Bert,

    I'm so happy for you about Jonathan's lack of HCM!!!! I'm glad that he's able to go play and be a kid again. I don't understand all of the tests and what they mean, but I do understand the stress test and those results. Please follow through with the catheter to make sure that he's getting oxygen all the way through the heart. Otherwise you might set yourself up for some serious side effects. I sure hope you enjoy your Easter.

    Reenie
    Reenie

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

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    • #3
      Re: Update on our son Jonathan

      Bert,
      You and your family have been through a great deal in the past few months, the anger in your letter is clearly focused there and I do not know one person that would blame you for that.
      My wish for you and your family is that your son is clear of HCM and healthy and never need worry about his heart. I know that is what the docs hope for as well. I hope the MRI readings are able to be explained and once and for all you will know if he does or does not have HCM.
      While you wait for the answer please know we are here and that we understand... you may vent at anytime.
      I know Dr. Maron has been working hard to find the answers to your sons case. I also know he cares deeply and will be there for you all.
      Best wishes,
      Lisa
      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)

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