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So how stupid are the non-hcm Doctors?????????? (venting)

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Beverly Find out more about Beverly
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  • So how stupid are the non-hcm Doctors?????????? (venting)

    Well hmmm let's see, many of you saw my husband write about me being diagnosed with end stage hcm recently after having hcm for 14yrs and longer when I think about my symptoms as a child. Needless to say I saw Dr. Maron in Minnesota and he gave me the disturbing news. I ran with it when I got home to get the meds they had suggested and start the process of getting on the transplant list.

    I was seen on Tues. 6/22 and was home in Va 6/28 and on the phone to my home cardiologist. They call me back to say what are you talking about after I had called and discussed the findings myself with one of the nurses so she could give my doc a heads up. So tues. 6/30 they call to say that the Minnesota docs haven't called them yet so I called the Minnesota docs and said please call my home docs or send the letter that states the findings so I can start the new meds etc. The Minnesota docs faxed the letter that day and called my home doc. No word at all by friday from my home docs so I called them again and said what's going on? They said oh your doc is on vacation so With a fused burnt I said okay so which doc is going to handle it now? One of the other docs said after reading the letter okay we'll start on Prinivil which is just replacing one beta-blocker for another (even though it's the preferred one). I asked what about the three other meds he wanted me to go on? Oh well he wants you to see your home doc in one month.

    So that's one med only and no transplant help for 6 weeks total. What does that say to me other than okay you don't understand the disease, fine but you have an expert telling you what to do and you still don't listen! That's stupid!!!!!!!!!! I have made them schedule me for 7/12 which when my doc comes home from vacation and he and I will be having a little heart to heart. Ya know this is what my husband said, okay so he doesn't know much about the disease when you come along but after 14 years of being your cardiologist he would attempt to learn so he could be helpful!

    So as Lisa says knowledge is power. If I wasn't a nurse I would totally be lost in how to handle and make these people do what I need. So please don't take no for an answer when you know what you need.

    Take care and God bless!
    Beverly

  • #2
    Re: So how stupid are the non-hcm Doctors?????????? (ventin

    Geez, Beverly! All I can do is pray for you to have the wisdom to say the right things to make them understand. Good luck!

    Reenie
    Reenie

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

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    • #3
      Re: So how stupid are the non-hcm Doctors?????????? (ventin

      Just what you need I am so sorry that you are going through this waiting game. I don't know Dr. Maron, but I do know that the Mayo Clinic is very prompt. I have been going there for almost 4 years and my cardiologist always connects me with the right dr. for my condition (CHF, my second myectomy etc.). The nurses there are very knowledgeable and helpful. One nurse even we as far as calling the kitchen for a recipe I wanted! Talk about service.
      Unfortunately sometimes you have to keep on top of things. I would keep nagging them until I see results.
      Take care and I pray that things get easier for you.
      Esther

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      • #4
        Re: So how stupid are the non-hcm Doctors?????????? (ventin

        Beverly, sounds like you are getting a raw deal by your local docs. Where are you planning to get on the transplant list at? At home, or in Mn. My suggestion would be at a HCM center. Just having had a transplant. I know HCM people usually do not reach transplant stage, less than 3% ( Arent we lucky to be in the minority.) I would definitely reccomend a center that does many of them. Mine was done at Mayo in March of this year and I am doing well. If you have any questions, just PM me. Good luck
        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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        • #5
          Re: So how stupid are the non-hcm Doctors?????????? (ventin

          Bev,
          A friend of mine said to me there are 2 kinds of women - Princesses and Wariors - You my dear are a warior!

          Take care,
          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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          • #6
            Re: So how stupid are the non-hcm Doctors?????????? (ventin

            Wow!

            Sorry to hear that you are going thru this, but thanks for sharing, because it seems like it is a battle with my husband and father-in-law's primary care physician about HCM ...

            I'm sure they don't like to hear something they don't know about, especially if someone has been looking into things ...

            But doesn't it just bite 'cha in the hiney , when your doctor won't look into what you have! I mean how do they expect to treat you if they don't know or understand what is going on? And aren't we all supposed to learn something new everyday no matter who you are, how old you are or what you do for a living? At least that is what my Grandma always taught me ...

            And after telling my husband that there was nothing wrong with him for YEARS, his primary care physician still isn't sure if "this condition" has anything to do with how he is feeling ...

            Keep up the persistance! Keep learning! and thanks for creating the opportunity for all of us to vent with this topic!
            \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

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            • #7
              Re: So how stupid are the non-hcm Doctors?????????? (ventin

              Unfortunately some doctors have extremely large ego's. It has been my experience as an HCM patient and as a former nurse that those with the biggest egos are usually the least qualified to have one . They could really learn a lot from our HCM specialists on how to basicly treat as well as properly diagnose a patients problem. Even after I up and left my Cardiologist/acting PCP of 18 years he did not then or has he to this day admitted he made a boo boo. I do know he probably fears legal action so he keeps his mouth shut. What fries my %$#@ is that he is now Chief of Cardiology at the" bandaid station", I am still hearing horror stories about his misses, but when he finds out that anyone who sees him is related in any way to me or if my name comes up he says they should call me and go to who I am seeing. It is just an atrocity on poor unsuspecting patients.

              My 2 cents. 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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              • #8
                Re: So how stupid are the non-hcm Doctors?????????? (ventin

                I think a little levity might help on this issue, so I'll share my STOOPID DR story. Last Fall, during my yearly GYN visit, my Gyno asks "Any Surgeries this year?" I said, "Yes, I had a Septal myectomy a couple months ago" Dr says "You had a Nose Job - at your age?) I laughed so hard I almost fell off the table!
                RONNIE

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                • #9
                  Re: So how stupid are the non-hcm Doctors?????????? (ventin

                  Ok now that was funny

                  Shirley
                  Diagnosed 2003
                  Myectomy 2-23-2004
                  Husband: Ken
                  Son: John diagnosed 2004
                  Daughter: Janet (free of HCM)

                  Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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