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I went to Boston!

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Dave Johnson Find out more about Dave Johnson
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  • Lisa Salberg
    replied
    Re: I went to Boston!

    Dave,
    Thanks for the update..can you do me a favor...give Mindi a big hug from me!
    Be well,
    Lisa

    Leave a comment:


  • Dave Johnson
    replied
    Re: I went to Boston!

    Hey guys,
    Just an update. I've been off Atenolol for almost 3 weeks now and my life has changed dramatically. I can function on a normal night's sleep (7-8 hours as opposed to 10-12), my short term memory has improved 200%, my blood pressure is back to normal (instead of of floating around 50/65!), I'm waaaay less irritable, more focused, less S.O.B., only slight fatigue, etc. etc. etc. - it's unbelievable.
    Oddly, I'm still on 900mg of Norpace (Dysopyrimide) per day - I've tried to back down from it but notice immediate symptoms, so I'm staying put with it for now.
    Dr. Maron has suggested increasing my Verapamil from 80mg to 160my per day and thinks I'll feel even better (is that possible? I'd forgotten what it was like to actually feel just 'ok').
    We are so incredibly indebted to the HCMA, Lisa, Tufts, Dr. Maron, and a young lady named Mindi Barger that helped us find this site. My wife and I feel like we have our life back.
    I can't emphasize enough- if you haven't been to a REAL HCM clinic - make it your top priority. General cardiologists mean well (I think mine is brilliant) but they just don't seem to have a grasp of the condition or merits of the various treatments. Don't waste any time - especially if you're feeling bad all the time. You never know what you might gain.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: I went to Boston!

    I will chime in here a little
    1. HCM can present any time in life...from birth to 90 years +
    2. It is thought to be more common to develope it by 20-25 yrs of age - HOWEVER - in polls taken here by the HCMA the average age of diagnosis is nearly 40 years old.
    3. ECG's/EKG's often pick up abnormal patterns in the heart beat in those with HCM - about 10% have normal ECG's/EKG's
    4. Echo's pick up nearly all known cases of HCM - however there are some that are very difficult to pick up on echo and we are still learning about these cases.
    5. The role of MRI in HCM has not been clearly defined at this point. It will likely become more common in those cases where the echo is not providing ample information.
    6. Children and teens may begin to have cardiac signs (not symptoms but signs) of HCM before the hypertropy kicks in. This is one reason why follow up screenings should be done every 1yr to 18 months during rapid growth.

    On a side note - I would like to share a story - This will show you all where we are and where we need to go.
    Of all those who die from HCM - only 50% are diagnosed - the rest never have the oppurtunity to seek treatment because there first symptom is death. In the 7 years since the HCMA has been running we are aware of only 1 death that was a true HCM death however the person did not show any hypertophy - only myocardial disarray at autopsy - then a family screening found HCM elsewhere in the family.
    This story has always reminded me of how much we still need to learn about HCM and how little is really understood about the heart. At the ACC meeting a very prominant doctor gave a talk about the history of cardiology. It is simply amazing how far we have come in only 100 years - and the amount of progress in the past 20 could make your head spin...
    The moral of the story... WE have a great deal to learn and what we learn today will help our children and their children and so on.

    Lisa

    Leave a comment:


  • Sarah
    replied
    Re: I went to Boston!

    Hi,

    Well, I need to point out that 99% of HCM is found by echo. And Bert --if I remember correctly, your son was diagnosed by echo correctly and it was only a different echo by someone else that was inconclusive (right?). So technically, it _was_ found by echo.

    Unless the price comes down exponentially, MRIs are not going to be used for diagnosis for a long time.

    ECGs of HCM patients may show changes, or not. This one is a bit of a grab bag.

    An ECG AND an echo are the two tests that need to be done.

    S

    Leave a comment:


  • Bert
    replied
    Re: I went to Boston!

    Dave,

    To take it one step further, my son is living proof that echos do not always pick up HCM even during adolescence. Cardiac MRI was the diagnostic tool for him as his echo was completely normal (that's what we were told anyway). So, you see it is even more complex than people think. I would ask for an MRI and not take any chances if and when the time comes.

    Best of luck to you, and I'm glad to hear Boston was able to make you feel better. They're good at that.

    Leave a comment:


  • Cynaburst
    replied
    Re: I went to Boston!

    Yes, Mongo, I believe you are correct. HCM can present later in life...its likely to present at adolescence, but if you don't have it then, you are still not in the clear.....

    I had my son tested in utero, at 15 mos., and will keep retesting every few years until adolescence, when I will do it every year.

    Leave a comment:


  • mongo_jones
    replied
    Re: I went to Boston!

    hi dave,

    me again--this time with a response to one of your points. sarah (i think) corrected something you said saying that if richard has it it will show up on an echo not an ekg. i haven't gotten any specialist advice on this but based on my reading my understanding is that unless hcm manifests itself spectacularly in childhood thickening does not usually show up on echoes till puberty. ekg's, on the other hand, may sometimes catch irregularities before this time. so, yeah i think you're right. then again, i could be wrong. could someone who's actually undergone genetic counselling on this score clarify?

    cheers!

    mongo

    Leave a comment:


  • Sarah
    replied
    Re: I went to Boston!

    Hi,

    Well, pricing is complicated. First you have the doctor's fee, then the tests, and then the travel costs. Travel costs are tax deductible, but they have low caps. See irs.gov for specifics.

    To really know what costs to expect, call the business office of the center and they will tell you everything you want to know. They will also be familiar with your insurance company (most likely) and can give you an idea about how they handle things.

    take care,

    S

    Leave a comment:


  • mongo_jones
    replied
    Re: I went to Boston!

    yes, sarah--i think mine pays 50% for out of network doctors. i'm just wondering what the 50% i would have to pay for would likely come to with the major hcm specialists (especially since the out of network people likely won't have the negotiated rates).

    Leave a comment:


  • Sarah
    replied
    Re: I went to Boston!

    Dear Mongo,

    If you have insurance, you will need to talk to them or read your policy. Many will pay for out-of-network doctors if you follow the correct procedures (whatever theirs are) for the referral, etc.

    take care,

    S

    Leave a comment:


  • mongo_jones
    replied
    Re: I went to Boston!

    dave,

    i'm new here but want to add my happiness at your good news and (hopeful) continued improvement in quality of life. i am 33 and only recently diagnosed--i also have no obstruction but as of yet i am lucky to have no symptoms or limitations to speak of. nonetheless, i am aware that this is a very variable condition and something that is true today may not be so tomorrow. as such i am also considering visiting a true hcm specialist soon. my question for you is insurance based: did you end up paying for the consultancy with dr. maron out of your own pocket? or did your insurance cover some portion of it? either way, can you (or anyone else with experience) give me a sense of how expensive it would be to see someone like dr. maron for a consultation if one was paying for most or all of it?

    thanks!

    mongo

    Leave a comment:


  • Lisa Salberg
    replied
    Re: I went to Boston!

    Dave,
    WOW what a wonderful story. You have provides such a great outline for those to follow "the real story of living with HCM".
    I can not tell you how happy I am that you had a good visit and that you are on the road to having a better quality of life!
    I am sorry it took me a while to respond I have been having internet problems (and for the record that is life "withdrawl" for me!)
    Your story will provide encouragement to so many. Thank you for sharing it with us.

    Peace and good health to you!
    Lisa

    Leave a comment:


  • Linda
    replied
    Re: I went to Boston!

    Dave, thanks taking the time to post for us. I'm so glad you had such a positive visit. Hope the med changes go smoothly and the benefits are many - Linda

    Leave a comment:


  • sueb
    replied
    Re: I went to Boston!

    Dave---Great post! I learned a lot. You may like Verapamil. My first try at the right dose was too high and my ankles became swollen but, other than that, I have had no side effects. Hope it works as well for you. Sue

    Leave a comment:


  • Dave Johnson
    replied
    Re: I went to Boston!

    I can't say enough good things about Dr. Maron. To actually feel like you're the only patient in the place was incredible. He's such a nice guy and very compassionate.

    Leave a comment:

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