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I have a MAJOR vent LONG

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Reenie Find out more about Reenie
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  • I have a MAJOR vent LONG

    My kids had their echos done a couple of weeks ago. When I told the doctor that they needed the referral he insisted on writing IHSS on everything that he signed. That aggravated me since I corrected him every time he wrote it. Then when I actually went for the echos I noticed that one son's doctor order said the reason for the screening was possible "IHSS / dilated cardiomyopathy." Now I'm getting mad. DCM is sorta opposite of HCM, right???

    I had the doctor change the order to read HCM. I got the echos done, everything looked all right as far as I could tell. The hospital says that the doctor office should have echo reports no later than Monday. That was last week. When I went for an appt for myself today they still didn't have the reports handy. Not acceptable, I say. They come up with reports and he says they are all fine.

    I asked for personal copies of the reports and they say "ok, just a minute" and scurry off to the copier. The girl returns with front page only of the report. I tell them that I want all pages, including actual measurements. They scurry off again and bring me stapled pages.

    In the meantime I continue with my examine, including family history since it's the first meeting I've had with them. When it comes to hubby's health the doctor writes "IHSS" and starts to write "dilated cardiomyopathy" again. I stop him and say "That's wrong" for the 50th time. He fixes the entry.

    When I get back to the lobby ready to check out I realize that I have 2 pages of echo report for 2 kids, but only top sheet for the last kid. I go back in the other room. I also notice that under reason for screening on all of the echos they say "Cardiomyopathy, Dilated." I'm getting PO'd by now.

    Doctor assures me that the pediatric cardiologist would have looked at the total echo and measurements and not just the reason for the screening. I reply "If I have breast cancer I'm not seeing a lung cancer specialist, although both are cancers. Why would I look for DCM when we have family history of HCM?"

    Now that I'm home I realize that the 2nd page that they printed is not the actual measurements of my kids, it's the means that they compared to. On top of that, on 2 kids it says: "Septum: Cannot Evaluate." What the HE!! does that supposed to mean?!?! What was the echo for anyway?!?

    I'm driving the hour back down there tomorrow and I am getting some answers I will not tolerate incompetence like that! Any suggestions?

    Reenie
    Reenie

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

  • #2
    Re: I have a MAJOR vent LONG

    Dear Reenie,
    What a vent! You deserve to have answers and I know you will get them. First, because you are knowledgeable about HCM and second because you are persistant.

    Bring a list of concerns, check them off as they are handled. And, most importantly, take a second before you enter the office and as you feel yourself getting flustered while speaking your mind to BREATHE. The conscience breathe is one of the most calming, centering actions we can take as a human being.

    My prayers will be with you tomorrow when you are driving to the doctors office, please be careful and stay focused on the road and throughout your visit.

    Blessings to you dear one,
    Sharon

    Comment


    • #3
      Re: I have a MAJOR vent LONG

      Reenie,

      I'm glad you put so much thought into describing the events and your concerns as that should help clear your head in preparing for tomorrow. I agree with Sharon that you need to take a list of your questions and check them off as they are addressed. If I were you, the question which would head my list is some version of "Tell me your understanding of the differences between DCM and HCM." If the answer is defensive or inadequate, I'd hunt for another physician and echo lab.

      I'd recommend two additional things. (1) Take your copy of Maron & Salberg's book and be prepared to use it in establishing your own credibility. You might even offer to get them copies if they express an interest. (Wouldn't that be wonderful if it happened!) (2) Have you a friend who knows you, understands HCM a bit, and can back you with support and assistance as you ask your questions? If so, see if this person can go with you. Sometimes another person with you helps make the health care personnel more careful in their answers. And sometimes that person can reword queries so they're understood. And sometimes just the silent support helps us be better advocates for ourselves.

      I'll be thinking of you, Reenie. Good luck!

      Pat

      Comment


      • #4
        Re: I have a MAJOR vent LONG

        Sharon and Pat, thank you both so much for your responses. I was so very mad last night. I feel a little better this morning, but am still going back down there today. Pat, when I requested that they get the echos to begin with I did have my book with me, prominently displayed on the desk and he even had to move it to write in the charts. Uggh! I ran into this before in SoCal. The International Heart Institure at Loma Linda University insisted at first that my husband see the CHF specialist because he has "cardiomyopathy." I kept insisting that he didn't have CHF and he didn't need that specialist. He finally got in with a different doctor. Boy, why do I have to be the one to spell things out? I will ask a friend if they can go with me. It might make me feel better. Thanks to both of you for the suggestions.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: I have a MAJOR vent LONG

          YOU GO GIRL!!!! I know you won't take "no" for an answer!

          Comment


          • #6
            Re: I have a MAJOR vent LONG

            UFF DA!
            Well... I would be just about as ticked off as you! I would also demand some clearer answers. Did anyone talk to you about the echo results and need for re-evaluation yet?

            I think you received some good advice and I hope you get the answers you need...and I hope the doc gets the message..which in my opnion is 2 fold...1 LISTEN TO THE PATIENT and get the info correct. 2. HCM is HCM...not DCM not CFH NOT anything but HCM!

            Best wishes and a big hug!
            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)

            Comment


            • #7
              Re: I have a MAJOR vent LONG

              UPDATE

              I went up there, and did my best to stay cool so they weren't on the defensive. The nurse didn't have enough knowledge to help me, as I suspected. She said the doc I saw yesterday wasn't there. (No skin off my nose!) So I asked to talk to a staff doctor. This is a family practice office that houses a lot of residents.

              I talked to a senior doctor and I let him see my HCM handbook. He agreed that the terminology should be correct on the page where they tell what they're looking for. (Although he thought I was a little pushy on the IHSS/HCM thing.) He said that overall the echos were normal on all kids.

              Then he went to try to show me the measurements on the report and how they compare to norms. UNTIL I pointed out that 2 kids measurements were exactly the same. Not very possible, right? I got him flustered on that one. (I don't think they're used to patients having a clue or actually reading reports!)

              He's supposed to be getting with the hospital that did the echos and the one that read them to get true readings for all 3 kids and getting back with me. Any takers on how long it'll be before I get a call???
              Reenie

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

              Comment


              • #8
                Re: I have a MAJOR vent LONG

                Originally posted by Lisa Salberg
                Did anyone talk to you about the echo results and need for re-evaluation yet?

                Lisa
                Nope, no mention of it at all. Good grief, I'm glad I'm not new to this stuff!
                Reenie

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

                Comment


                • #9
                  Re: I have a MAJOR vent LONG

                  well i went to see my cardiologist today, and i really need to venton someone. i had my 3 mon checkup today, i've been having trouble with getting lightheaded, for about three weeks now, the dr. put a holter monitor on me, he says it did not show anything. i had wrote some notes to talk over with dr. that was concerning me, he asked if anyone had talk to me about having an ICD put in because several people in my family has died from sudden death with this disease, i about had a fit because he put one in me in march of this year, he also told me 6 months ago i was well in advance with this disease, now he says i wasn't and it is mild, needless to say i was furrious, i stormed out of his office, and i'm never going back to him. he did not even know who i was even though he just seen me 2 weeks ago. he brush off all the other questions. he didn't even look at them, how can a dr. operate on you and see you for 6 months and not know me. he only put the stethascope on one area on my chest and that was it, i got up and walked out. he didn't even seem to mind. I came home and called my insurance company and turned him in. also found out that if my primary dr. oks me going to Cleveland heart clinic they will pay for it because there is not a specialist in my state for hcm, so i would like to see if i can get in to see dr. Lever if possible, i've heard alot of good things about him, i need some peace of mind, because right now i just feel like giving up. i started crying when i walked out of his office, i was so frustrated. His PA knew me and he didn't, how can you forget operating on someone, names i could understand if he forgot that but not my face as many times as he has seen me, almost every month since march, because of med problems Thanks for letting me vent , i feel a little better now. he also keeps calling it IHSS and i say HOCM everytime i see him 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

                  Comment


                  • #10
                    Re: I have a MAJOR vent LONG

                    Reenie,

                    First of all, i consider you to be one of the most level-headed and supportive people i have ever met on this board... so in my mind, if anyone has ever earned the right to do some bitching here... i think you have! Don't ever be sorry for venting your frustrations. Having children at risk from HCM is just as scary as having it yourself... maybe even more so. You go girl! There is so much incompetence in the medical arena, God knows i have experienced it firsthand, just like everyone else here. You get in there and let them know you won't accept it!

                    Secondly, and this one is to Lisa... UFF DA? I didn't know you were from Minnesota!

                    Jim
                    "Some days you're the dog... some days you're the hydrant."

                    Comment


                    • #11
                      Re: I have a MAJOR vent LONG

                      Dear Shirley,

                      Gosh hon. I sure hope your day got better! You do deserve to have someone who knows your case a little better, even if it's just simply picking up your chart and reading it before you get there. Good luck with the referral to Dr Lever.

                      And Jim, thanks so much. I feel much better.

                      I talked to Lisa today too. The biggest of my concerns are that they were looking for DCM, not HCM. That means they might have missed slightly thickened measurements if they are looking for thinning. The other concern, obviously, is that nobody seems to know what my kids' actual measurements were. There's no way, well maybe statistically, but there's no way that they both have identical measurements. I mean totally identical. Something has to give. They are currently researching and said they'd get with me next week. They'd better!!!
                      Reenie

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

                      Comment


                      • #12
                        Re: I have a MAJOR vent LONG

                        How do such unbelievable things keep happening? The last appt we had, my son took the call for the appt, himself. Things weren't sounding quite right, so I called and asked to just go over what was planned so that we knew we had the appt we needed. The secretary more or less told me to mind my own business, she did this all the time, knew what she was doing, and didn't need my help. We showed up to be met by a pacemaker nurse and a Guidant Company Rep with Guidant ICD settings to reprogram a Medtronic Pacemaker. The Electrophysiologist was not even in the office and he was the only one we were to see. No harm came to my son, but only because we knew ahead of time that there was no way we were getting thru to the one who was sure she knew it all. We got our backup plan in place and walked in knowing we wouldn't stay if anything looked amiss. Those eyes just keep rolling over and over and over.... Two things about all these foul-ups that are really annoying, they still expect to be paid, and you've really wasted a lot of time straightening things out that should never have been messed up. Linda

                        Comment


                        • #13
                          Re: I have a MAJOR vent LONG

                          Linda i know what you mean, paying all that money to someone yo expect them to know who you are and what they have done to you, i keep getting a different story everytime i see my dr. or should i say this dr. he's not mine anymore, i think he needs to spend more time getting to know his patients rather then his golf game, he could have at least like reenie said read my chart before i got there. hope you got everything worked out. i know i did, i was hotter than a firecracker today and everyone in that office knew it too. You take care will type more later
                          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

                          Comment


                          • #14
                            Re: I have a MAJOR vent LONG

                            Reene------------

                            I don't know where you live, but here in New York, patients have a right to get their reports directly from the hospital or test center after 30 days. The time is specified so that there has been adequate time for the patient to speak with the Doctor before getting the reports and reading them alone. If there was truly BAD news in the test, presumably the Doctor would have spoken to the patient before the 30 days was over.

                            I hope you can simply request originals of the tests from the hospital before too long.

                            Hope this helps-----

                            Comment


                            • #15
                              Re: I have a MAJOR vent LONG

                              Shirley here are a few thoughts...
                              1. GOOD FOR YOU! I am happy to see you standing up for yourself and taking your care into your own hands!
                              2. Whatever was going on with this doc...he should at least learn how to read his notes BEFORE opening his mouth!
                              3. Cleveland is a great center - I doubt you will have any of these problems there!

                              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)

                              Comment

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