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  • If HCM is "mild" why does Hubby feel so ..

    [If HCM is "mild" why does Hubby feel so bad?]

    Author: Karla (---.proxy.aol.com)

    Date: 08-23-02 09:42

    Hi Gang,

    Hubby went to doc for his 3 month check-up this week. We saw another cardo as we weren't happy with the last one. Didn't hear anything different from this guy...he 'dittoed' in agreement everything that the first cardo had done. I wasn't expecting much, but was hopeful none the same. (this guy isn't an HCM specialist either)

    I just find it so distressing that both have seemed to just 'sluffed it off' and told Hubby that it's 'mild'. AND this doc told him that he wasn't convinced that his fatigue was due to his heart.....HUH??????

    If it's so mild, then why does hubby feel so bad???? I know from reading these boards and making comparisions that his measurements are not as severe as others with HCM......but words like 'diastolic dysfunction', "mild pulmonic and tricuspid regurgiation", "obstruction", "severe concentric hypertrophic cardiomyopathy" are all on the reports!

    Maybe we are barking up the wrong tree and should cast the net further? Thought

    we had finally figured out a correct diagnosis after YEARS of him 'not feeling well', but maybe that's not the case after all... I just don't get it.....

    .....done venting now.......

    Karla

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    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 08-23-02 09:52

    Oh I know exactly how you feel! I have days where just getting out of bed takes some work! Of course my Drs. are telling me that my symptoms have to originate somewhere other than my heart. So far I've had PFT done, more blood tests than anyperson should go through (lupus, rheumatoid arthritis, increased amts of adrenaline).I am even having to have a consult with a GI dr. In fact I got a clean bill of health and was told to do whatever I wanted! Their philosophy is if there is no obstruction then there can be no symptoms!

    Yes Lisa and Sarah I am trying feverishly to get that referral. Everyone keep their fingers crossed for Tuesday!

    First day of school and cardiologist visit no stress there

    Oh yeah these guys want me to get an EP test done. If I am fine why do I need the test?

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Lynn S. (---.dsl.dytnoh.ameritech.net)

    Date: 08-23-02 10:03

    Karla,

    I'm so sorry to hear about the frustration that you and your husband are experiencing. It's mind-boggling how some doctors can run you in circles so much. I am seeing an HCM specialist now because of that very reason. I do have a local cardiologist who checks my cholesterol and is supposedly one of the doctors who better understands HCM in my local area (although he doesn't treat me for it - Dr. Lever in Cleveland does) and even he shook his head and said, "no, your fatigue is not from your HOCM but rather from your meds...". My husband and I just smiled, nodded and turned the discussion back to cholesterol. Absolutely ridiculous when you do not get your symptoms legitamized by a doctor.

    Beyond just commiserating, I thought you might find it helpful to hear something Dr. Lever told my husband and I when we visited him in June 2002. When discussing my measurements of septal wall thickness and gradient Dr. Lever said -"You're measurements aren't that bad but you are very symptomatic. This disease is fickle, and it's a part of it we don't understand yet that many times those with the worst measurements have hardly any symptoms and those with lesser measurements have so many." It was a relief to hear that I wasn't making it up.

    Is your husband seeing a specialist? Are you able to get to one if not? It has made all the difference talking to a doctor who actually knows more than just 'textbook' information about this disease.

    All the best,

    Lynn

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    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Patricia wonderly (---.158.80.164.Dial1.Buffalo1.Level3.net)

    Date: 08-23-02 11:15

    Karla:

    My septal wall measurement is 27mm. I have been told that the measurement is not indicative of the severity of the symptoms. You can have a small increase in septal size and be very symptomatic, or you can have a larger one and have few symptoms. This is not a black/white disease with specific parameters in which to measure severity ..IT .. is a very "gray" disease with many unanswered questions.

    Please have your husband see a specialist in HCM

    Good Luck!

    Tricia

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    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-23-02 12:49

    Dear Karla

    ""severe concentric hypertrophic cardiomyopathy" is not mild. Please call the HCMA at 973-983-7429 to get the name of a specialist. You are not barking up the wrong tree, you are barking at the wrong doctor.

    I can't say anything more or better than the posts above except to say you really, really, really need a real doctor now.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Lisa Salberg (208.47.172.---)

    Date: 08-23-02 14:20

    Karla and the rest.... Having HCM is like being a little bit Pregnant.... Either you have it or you dont....Symptoms are not related to measurements nor age... Wyh...cant tell you ...but I can tell you chest pain (which for the record I am having as I type this) and fatigue are very common in HCM.

    GET to a specialist....please.

    Lisa

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    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Karla (---.proxy.aol.com)

    Date: 08-23-02 20:33

    Thanks everyone.....

    As always, good to come here to the boards to get a "reality" check. It always helps to forward the good info/advice I find here to hubby!

    Working on the trip to Cleveland to see Dr. Lever. Like so many others, working out a way to make that happen - insurance, travel expenses, etc...wish us luck!

    Just knowing there is a place that people UNDERSTAND makes it better ...Lisa, Sara and all of you are a real blessing!

    Karla

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-24-02 01:42

    Dear Karla

    Don't forget that some of your travel expenses are tax deductible so keep all receipts---food even.

    And you are very welcome for everything we have to share.

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Matt (---.disney.com)

    Date: 08-26-02 09:46

    Karla,

    I made the trip to Minneapolis last month to see Dr. Maron and it was all out-of-pocket. I charged my credit card to its limit and the hospital sent the bill later so I didn't have to worry about that right away.

    All in all as I'm sure you're aware, it was a good hunk of change. But do you know what? It was worth every cent! I'd do it again in a heart-beat

    It doesn't look like my HMO is going to give me anything (I'm on my second appeal), but then again as Sarah said, there's always tax time next year.

    Hope you can go soon. It will make a world of difference. Matt

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-26-02 11:26

    Dear Matt

    Will you be switching to a PPO when open enrollment comes around at DIsney this year?

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Mary Sharp (---.net308.fl.sprint-hsd.net)

    Date: 08-26-02 12:26

    Hey matt!

    Which plan do you have through Disney? I have the Aetna POS so far it has worked well but I guess I'll know tomorrow. My local cardiologist is going for Dr. M. Maron in Boston. I hope there is no problems!

    mary s.

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    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Matt (---.disney.com)

    Date: 08-26-02 14:08

    I have CIGNA HMO right now and am definitely going to switch to a PPO/POS plan on the 1st of next year (which is the earliest I can).

    Matt

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Karla (---.proxy.aol.com)

    Date: 08-27-02 07:24

    To Mary and Matt...

    I believe my ."Hubby" is the 'other Disney person' - Mary made a reference in her recent post! We have the POS insuranance....hoping that will work for trip to Cleveland.

    My best to both of you!

    Karla

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 08-27-02 07:51

    I will keep my fingers crossed for your trip! We should all get together sometimes. It's not like we don't have any great places to meet here!

    Karla who is your hubby seeing for a local cardiologist or "specialist" for that matter. I have a great local if you would like some info! I can't say so much for my other though. Prvious post to this thread will answer that.

    Mary S.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 08-27-02 08:58

    Karla - Yes your the other Disney people..But I do not like telling others who you are unless YOU want to be "found". SO I figured I would give them the info and if you wanted to speak up you would..and you have... and I am very happy about that. You now have a "Minnie" HCMA Mouse style!

    Sorry could not help the open access to the really bad humor!

    I hope you all get together..and take some picutures!

    Best to all and my regards to the MOUSE!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: If HCM is "mild" why does Hubby feel so bad?]

    Author: Dave Johnson (---.lr.anc.net)

    Date: 09-02-02 13:57

    Get a new doctor get a new doctor get a new doctor!!!!
    NOTE: This is a post from the previous forum message board.

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