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DOCTORS !!!

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  • DOCTORS !!!

    [DOCTORS !!!]

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

    Date: 08-02-02 09:52

    Hi All...........

    Well I have just completed my Doctors appointment with my 3rd Cardioligist in 6 months. I have no more answers now than I did before. Dont get me wrong...he as was the one before him, are fine doctors. They just dont know HCM. Why is it, the still call it IHSS and refuse to refer to it as HCM? When his nurse was in the room taking blood pressure. ect.... she ask what was wrong with me and I told her, "I have HCM" ...she looked at me with this agrivated, irritated look and said " AND WHAT IS HCM?? " I told her what it was...and she had no clue!!! The Doctor......very nice man.....well educated about all Heart problems.....EXCEPT HCM!!!! I gave him my HCM book, I bought in hopes he would read it and learn.

    I had all kids of questions written down....what is my gradient????he said somthing about "40" and then went round and round the subject until i was crazy....I ask about the thickness of my Septum...oh they dident have that in any of my records, due to my size ( large bust), its real hard to measure my septal thickness. blah...blah....blah....Surely, as many ECHO's as I have had, one of them has a septal measurement.

    He then ask me about any problems I was having....I told him....chronic chest pain, left arm numbness, dizzy, the near fainting feeling, tired all the time, . Do these problems come on after exhertion or excercise? I told him it did not matter...that I could just be sitting and my chest would start aching, or get dizzy or do the near fainting thing.........he ask me if i had "NECK" problems,...pinched nerves???? I said noooo......why? He says, well.....the chest pain, at rest is not consistant with IHSS, you have all kinds of reasons for your chest and arm to be numb. He proceeds to tell me that my chest pain is probably not due to IHSS....ha ha ha, but a neck or shoulder problem. He raised the mg. of cardizem from 240 to 300, because my blood pressure is up. I was patted on the head and told you know a lot about IHSS....come back to see me in 6 months...now go home. Im so frustrated about this whole mess. I cant find a specialist...near by where I live, and I cant afford to travel hundreds of miles. Im angry and this is my VENT day....sorry....I dont mean to be a big whine @#$ !! The frustration has just gotten to me............Thanks for listening.....Connie

    P.S.....I DID REQUEST ALL MY RECORDS FROM ALL THE DOCTORS TO BE MAILED TO ME.

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    [Re: DOCTORS !!!]

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

    Date: 08-02-02 10:49

    Dear Connie

    Venting is good --we all need to do it from time to time and you have certainly earned your venting opportunities on this one. I got the old "chest pain is not a symptom of your disease" from my local hosptial a couple months ago. I just smiled and made sure I got out of there without any of them touching me.

    I know it doesn't help much, but travel expenses for medical care are partially tax deductible. Perhaps you have friends or relatives or friends of friends who live near an HCM clinic (Minneapolis, NY, and so are all pretty big places) so you could cut down on the cost. I'm sure you have probably gone around and around on this too, but I wonder if there aren't some creative ways of getting you to a specialist that you can afford. Where do you live?

    hang in there,

    Sarah

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    [Re: DOCTORS !!!]

    Author: Lisa Salberg (208.47.172.---)

    Date: 08-02-02 11:15

    Connie - - and the rest of you...

    I know life is not always easy and paying the bills and keeping your home in order takes a great deal of time, energy and money. But I hear something too often and I want you all to stop and think about this.

    THIS IS YOUR LIFE. Isnt it worth a few dollars out of your pocket to travel to a specialist, even IF the insurance company will not reimburse you???

    To often I hear the same issue Connie is dealing with and with all due respect to these local doctors, they do not see enough HCM to be helpful and make meaningful improvements in our lives. What happens in many cases is the person with HCM slips throught the cracks and then the local docs are left with a very symptomatic patients and say "did all we can" - that is normally followed by a grieving familiy member calling the HCMA telling us someone has passed away and asking why was more not done. Hey guys I HATE THOSE CALLS!!

    If I could find the funding to travel around the country with a crew of Docs knowledgeable in HCM to come to each of your towns...I WOULD do IT! But reality is we can not come to all of you, therefore you need to go to the specialist.

    Sit down with your family, get out the family budget; find a way to do it, it is not a ton of money in most cases travel and a consult can be done for under $1500 that would include and echo.

    Is your life worth $1500.00????????

    Connie - get to a specialist - -get your life back!

    With lots of love to all!

    Lisa

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    [Re: DOCTORS !!!]

    Author: Chuck (---.WLDF.splitrock.net)

    Date: 08-02-02 23:07

    Connie,

    There are undoubtedly people who read this message board who could help you out. Some who live close to one of the recommended centers who could provide housing for you. Some who have frequent flyer miles they aren't using and others who would support you financially if that is all that is keeping you from going to a HCM center. Post what center you would like, what your expenses would be including doctors fees and lets see what happens.

    Lisa,

    You have a wonderful way of setting priorities and putting things in perspective. We who use this board (and I know I speak for many) are very appreciative of yourfeedback to our questions

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

    [Re: DOCTORS !!!]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 08-02-02 23:19

    Lisa,

    I hated you message, but you are absolutely correct! It is the cheapskate accountant in me that does not like paying for my own medical when the insurance denies. However, while I am going to pay my way to Cleveland for a consult, what do you do for surgery which is way beyond an individual's means.

    Jerry

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

    [Re: DOCTORS !!!]

    Author: Board Moderator: Sarah Beckley (---.dialup.mindspring.com)

    Date: 08-03-02 17:36

    Dear Jerry

    If you don't have insurance, please talk to the Cleveland billing people. If you tell them you are self-pay you may get a big (50-60%) discount and a payment plan. Everyone I know who has done self-pay has gotten this kind of deal, but I don't know anyone who did this at Cleveland, so I'm not guaranting anything ---but if you don't ask, you don't get , is how I look at it. good luck with everything,

    Sarah

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

    [Re: DOCTORS !!!]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 08-03-02 18:27

    Sarah,

    Thanks. Somehow I thik even 50% is more than I have. I can change insurance in January, so my option there is to wait and suffer until then.

    Jerry

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

    [Re: DOCTORS !!!]

    Author: susan (---.179-233.vldsgacbds.dial.optilinkcomm.net)

    Date: 08-03-02 21:45

    hey lisa,

    don't we still have a few research clinics that have a research fund for patients who can't afford treatment? maybe you can check into baylor in houston and musc. i know at one point if you were unable to afford treatment they would do all they could to help out. maybe i am wrong, but i don't remember paying anything for my ablation or any treatment i got from the baylor clinic in houston. keep in mind this was almost five years ago. anyway i thought this might be an idea.

    best of luck

    susan

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

    [Re: DOCTORS !!!]

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

    Date: 08-04-02 19:22

    Susan,

    During the begining of the use of ablations you could get it covered under a research protocol, but not anymore. While there a few places to go for "research" that do not charge for a consult..the old you get what you pay for is true. So I suggest you all be careful on that front.

    Chuck,

    Your comment is well taken and I appreciate it very much!

    Jerry,

    Sometimes I hate the "truth" too....but what can you do... FYI re paying for any procedures that may be needed, the hospital can fight it out with the insurance company, it works 90% of the time. let them worry about it NOT you.

    Thanks for all the great comments and Connie WE all care about you and hope you get the care you need.

    Lisa
    NOTE: This is a post from the previous forum message board.
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