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Still feeling funky?


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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • Still feeling funky?

    I'm not sure what to think about this last episode. Normally, after a couple of days of complete rest I am as good as can be. It's not happening this time. Everytime I started walking today at work I would get short of breath and my chest would start hurting. I would sit down for a bit and it would go away. But as soon as I did something it came back. I ended up leaving work early hoping more rest would help. I was just chilling out on the couch when I felt a little odd I checked my pulse and it was in the 120's and felt like I was having a few PVCs.

    When I was in the hospital I think my local cardiologist had all but given up on me. He told me there was no need coming to the hospital. I offered to give him some of the great HCM information I had obtained and he blew me off by saying "It'll be out in the medical journals in a few months I'll read it then". I don't know about any of you but when your not feeling well a few months feels like a few years. Oh well, enough of my complaining.

    Lisa, I did look back at some of my old echos and found gradients up to 70%. Is there a specific number indicating obstruction or is it different for each person? I've always been told I am non-obstructed.

    I'm not sure what to do about the chest pain. Yes, there are times I can tough it out but there are others that it just hurts so bad I want to cry. But the dr says no use in going to the hospital. What should I do when the pain gets really bad?

    I guess I should give Dr. Maron a call and see if he has any insight. I am also going to see if I can get in with my primary and see if she can help me. Any advice would also be greatly appreciated!


  • #2
    Re: Still feeling funky?

    Gradients are not measured in percentages, they are measured in "mm's", the percentage may be the EF?

    Call Dr. Maron and discuss your symptoms with him. I know that he is going out of town later in the week so do call today.

    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)


    • #3
      Re: Still feeling funky?

      Well, I talked to my GP yesterday about the issues I am having with my local cardiologist. I don't like being told that I should be happy to be as healthy as I am because some people are worse off than you. I also didn't like being blown off. He could have at least taken the paper.

      Anyway, she called a friend of hers who is a cardiologist and he is very interested in HCM. He was able to get me in for a visit today. He had a lot of interesting things to say. Honestly if I wasn't sitting there with him I would have thought he was M. Maron because everything he said was mainly what Maron told me. He also said he would keep in touch with Boston to keep us all on the same page.

      While we were talking and I made the mention that I didn't like changing Dr. and this relationship needed to be a long term one. I stopped and looked at him and said I almost feel like I'm on a first date or something talking about long term relationships and all. He laughed and we got along pretty well.

      So I guess now my perdicament is to change Dr. or not? And how would I tell my current cardiologist that I wanted to change?

      Mary S.


      • #4
        Re: Still feeling funky?

        You can either take the chicken route (which I myself have chosen in the last year since I am very non-confrontiational- I totally understand this), or directly have a conversation with the old doc, tell him or her why you were unhappy and why you feel you need a new doctor, and then ask that his office have your records sent to the new doctor.

        The chicken way is to call your old docs office and find out what you need to do to have your records sent to the new doc, do it, and then eventually he or she will figure it out when you don't call or show up anymore or when his office staff tells him.

        I know what you mean when you say its like dating. When I switched docs last year I felt like I was breaking up with my old cardiologist, who I loved, but who didn't know that much about HCM and had an EP partner that I didn't like and who I didn't want putting an ICD in me. Ultimately, I decided that it was my body, and I only had one of them, and that I shouldn't stay with a doc or have his associate cut me open because of loyalty when it wasn't in my best interest.

        Good luck, but I say change would be good for you. I have followed your various ups and downs in the last year, and I think you need someone locally who has your best interest at heart, and who will work with all of your other docs.
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


        • #5
          Re: Still feeling funky?

          dear mary,

          are you really hesitating leaving a doctor who tells you not to bother going to the ER if you are in pain??????

          you don't have to say a word if you don't want to. have the office fax/mail you the medical records form and have your files sent to the new guy. end of story.

          if you want to let this character know that they don't meet your needs, you can call and leave a message on the vm or with the front desk.

          move on, girl. what are you waiting for?


          • #6
            Re: Still feeling funky?


            I switched and was very vocal with mine i think he figured out that i wasn't coming back after i told him off. Cynaburst is right if you are not happy with your current dr. I would switch too, I figure if I'm not happy with him why stay, my old cardio dr. put me on Beta blockers when i take asthma meds, it was tearing my lungs up, my new dr. caught it, after reading my meds list. he put me on calcium channel blockers, and today he called and upped my Spirolactone to twice a day, Iam feeling a little better but i think he is going to have to up the meds blocker that is my heart is still pounding out of my chest and my heart rate is still over a 100 at rest, he said in fact i do not want you to do anything for now, because i asked about working in my yard, he didn't even put me on the tread mill because my heart rate was a 135 at rest in his office but by all means switch if you like this other doctor, it's your life and your body, and you know it better than anyone and if they don't like it they will have to live with that, this is why we live in this country, we have choices
            Take care
            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


            • #7
              Re: Still feeling funky?

              There's no reason to play games. Tell your old doctor that you are leaving, tell him why, and then move on. Doctors can get lazy and give poor service just like anybody else. It's not like the guy at the deli who cuts your lunchmeat wrong, this guy was in charge of your health. If you pay for an oil change in your car and they screw it up, you tell them about it don't you? I can't imagine thinking any less of your body than you do your car. But then again, i'm a crusty old 40yo.
              "Some days you're the dog... some days you're the hydrant."


              • #8
                Re: Still feeling funky?

                You took the words right out of my mouth! I absolutely agree with your comments...you go, girl
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson


                • #9
                  Re: Still feeling funky?

                  Originally posted by Sarah
                  dear mary, are you really hesitating leaving a doctor who tells you not to bother going to the ER if you are in pain??????
                  I agree with Sarah wholeheartedly, but i also think you need to tell your old doctor what he did wrong. There's so much misinformation about HCM and poor treatment... if nobody ever calls them on it, things are never going to improve. What about the next person who goes to this same doctor with HCM? Don't you owe it to them to say something?

                  Just my thoughts,

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


                  • #10
                    Re: Still feeling funky?

                    Big thanks for everyone's help. I do believe I am going to change doctors. I do also believe I need to tell my Dr. why. Unfortunatly, I am horrible with possible confrontations it stresses me out greatly. I think I may write a letter and let him know. I think it would be wrong just to leave with out any warning. Just like a relationship you don't just dessert them. Oh gee I hope he understans. As they say breaking up is hard to do.



                    • #11
                      Re: Still feeling funky?

                      Okay, i'm really going to show my age here, but as Neil Sedaka said so many years ago... Breaking Up Is Hard To Do. Yes Mary, I am a thousand years old. LOL. Leave the doctor if you want to, but at least tell him why. Hang in there
                      "Some days you're the dog... some days you're the hydrant."


                      • #12
                        Re: Still feeling funky?


                        like i said, you don't have to see them in person. a "dear john" letter is fine and even better in some ways as you get it all off your chest and the doctor can't interrupt or dismiss it and cut the appointment short. it also saves you the cost of a visit, which would be a waste of money anyway.

                        take care,