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  • What to say?

    I am looking for some help on to what to actually say to my stepfather, on why I believe it would be beneficial for my mom to go see the HCM team at NEMC. I get the impression he is not all for the idea, and I feel my moms cardiologist has also helped him to feel this way. When my mom asked her Dr for her records and explained why he said "thats fine, but besides them clustering all their HCM patients and collecting data, what are they going to do for you that im not? It seems like my stepfather agrees. I personally feel as if my mother could be receiving better medical treatment then what she is getting now. Like I I say to my mom all the time, "your going to a cardiologist, but how many patients does he have or see that have HCM?"

    1)Does anyone feel as if im in the wrong?
    2)How should/can I actually present it to my stepfather about the benefits of seeing an HCM specialist?

    Sorry for these questions that I hope I can get some answers to, but I felt I would probably get the best answers here, seeing we all fight these issues, and battle every day

    Take Care,
    Bryan

  • #2
    Re: What to say?

    Gosh, Bryan. I don't feel you're wrong and I know exactly what you're going through. In my case it's my husband that I can't get to a specialist. Just tell her that you're concerned that her doctor doesn't really understand HCM since it's an uncommon disease and that you feel if she saw a specialist, she might have a better quality of life. Good luck.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: What to say?

      Hi Bryan,
      Geez, that is a very tough question. You don’t want to intrude yourself between a married couple, even if she is your mom, yet since it is your mom you have a right, and possibly even a duty to make suggestions and express your concerns about her wellbeing.

      I think one of the keys is to talk to them together. Hopefully this will minimize any feelings of antagonism about your ‘butting in’. Then I think the first thing to establish is your concern for your mom being the reason you are expressing your views in the first place. Everybody can understand that motive, and hopefully it will open their minds to a calm discussion about the situation.

      Next, I think you have to establish that the NEMC is among the very best in the country when it comes to dealing with HCM patients. You can even suggest them checking out this message board to get some unbiased testimony about the Center. I would also question why your mom’s cardiologist seems to be afraid of getting a second opinion. After all most cardiologists have only a passing understanding of the condition, and you don’t know why he would be against getting a top specialist in the country supplying another view.

      The final card to play, - and one you might not wish to, - would be to reiterate your concern about your mom getting the best care possible, and offering to pay any expense not covered by their insurance to get her seen at the NEMC. I don’t know the whole situation, and can’t even guess at how it would be received, but it would firmly establish where your sentiments lay, and your deep concern for your mom’s situation.

      Hope my babbling has given you some ideas on how to proceed. It really is a sticky situation.
      Burt

      Comment


      • #4
        Re: What to say?

        Bryan, Remember I was one of those individuals who was a former patient where your mom now goes. I am not intending to knock them by any means as they were initially the ones who were finally to diagnose me after seeing me for 5 months! Even though I was sure that from my research that I had HCM , there was a lot of scratching of the heads before it was confirmed . Interesting that the first person I saw there said it was HCM that I was at great risk of dying and that I should not be working and they gave me a list of things I should be alert to that might hasten my demise in the next 24 hours and that I needed to see a world renowned specialist on HCM who just happened to be in practice at that hospital and that I needed to see him like tomorrow. Whew that was a sentence ! And then the world renowned specialist took 5 months to confirm HCM. Then he had a defibrilator implanted in me and eventually said I am sorry but there is not much we can do to help you; there is no magic bullet, ( saying the same thing 3 times over 2 separate visits ) for you and your particular form of HCM and due to the severity you would have to be at the end of your rope before any possibilities could be entertained as you are not a candidate for any interventions and the technology is not there for you at this time. Well as Lisa came to my rescue and sent in the real HCM specialists, the HCM Clinic, the wonderfull place we love , you can share with mom I am doing very well for a marked for death person , 5 months post myectomy. Getting stronger everyday doing things I never thought I could even dream of again. It is interesting that that particular doctor is still having a problem with what I had done and through my brother I have been told that he does not believe I have been helped and that this clinic advertises practically by handing out fliers in parking lots. He also recently backed that statement in his mind by saying to my brother that they also have an HCM Clinic there but just don't advertise it. NOT! Interesting also that he watched as I suffered and pleaded with him over and over to help me and never would have made a referral. I WAS AT THE END OF MY ROPE. He just refused to see it or direct me to the right help. So Bryan I hope this helps in some way to have your mom get the second opinion that she needs. Remind her that I am a nurse and a very trusting faithfull devoted patient and I do not jump ships easily but it may just have sved my life. Thank you once again to Lisa Salberg. Good Luck, 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

        Comment


        • #5
          Re: What to say?

          The number two most frustrating thing about HCM (after having it in the first place) is having do deal with your "average" cardiologists. The chips on their shoulders and their refusal to learn more about the condition can actually turn out to be harmful to their patients.
          In just the last month or two, we have heard on these boards that these "Doctors" have...
          1- Told a 14 year old girl to get a ablation.
          2- Told a pregnant woman that she had a 10% chance of dying during childbirth.
          3- Prescribed low doses of medication or wrong combinations.

          Your step father seems to be either a hard head or in awe of the advise of a medical professional. I guess he would refuse to reads these boards.
          The best thing to tell your mom is that its just one day. One day in which she will be in the hands of some of the top experts in the world concerning HCM. If you can just get her to Boston, then you'e done all you could for her. Whether she takes their advice, stays with her cardiologist, or seeks out help, would totally be up to her.
          Let them know that you'll back off if she will just make this one appointment.
          Good luck (have you had yourself checked out?)
          Fx

          Comment


          • #6
            Re: What to say?

            if you step-father is going to be an obstacle even if your mom decides to go, then you need to sit down with him and say,

            Hey, step-dad, I know that you want the best for my mom and I do too. I would like to talk to you about having mom see someone who knows HCM and can make sure she is getting the best treatment possible. Can I tell you why these doctors are different from the local guy? and go from there.

            Never accuse and use the word "you" as little as possible. Have information about NEMC in your hands and perhaps print out testimonials from this site, too, to show him. Go with what he will respond to best.

            good luck,

            S

            Comment


            • #7
              Re: What to say?

              Hi Bryan, I agree with Felix in that we do unfortunately often view our docs like they are gods and are in awe of their care. Some very good individuals deserve to be held in awe and some are contemptable with what they have done to us or should we say not done. I cannot impress enough the horror I felt that very first day when I was told that I indeed had HCM and my self diagnosis had been correct. Not that it had been a contest but my local cardiologist after maligning the diagnosis and the place took credit for sending me to Boston in the first place . He did not and I made my own referral & just asked him to get my records in order and ship them or give them to me. He held out with any sort of support and agreement and even tried to disuade me from the implant of the AICD. The support I desperately needed was not there. He had the audacity to offer in the end that I come to his office and have my AICD interogations and said there was no need for me to go into Boston. I wish I could have told him what I truly thought of him at that moment the anger ,hurt, disappointment. I left him after being his patient for 18 years, I wish I could have said "you're fired!" I was so angry I consulted a lawyer but the lawyer said it was complicated and if I could prove harm or get my doctor to clearly state that I would not have deteriorated if I had been diagnosed and treated earlier then he would go forward. I just dropped it as it was too much to bear. I really wanted him to just be stopped for being such a bad cardiologist. The kick is that he was not practicing as a cardiologist all those years and when he finally decided to be the chief cardiologist at my local hospital he told me I did not need to see him ,I could just see a GP. It is kind of funny now in a queer way now as the years have passed and I had to once again leave an institution that had helped me but then adopted his same attitude and said there was nothing further that could be done for me. I did take some responsibility and when I was denied out of network coverage for my AICD interrogations. I told the insurance company the whole story and backed it up in writing as a grievance. They said they use these complaints to determine who they will allow to be providers . It didn't change anything but I felt a little better but they did allow my out of network coverage.. I did however prevent them from sharing my letter with him. I wish I could have been braver but I did not want him to try and sue me . Heck if they get enough complaints they may change things. My friend a doctor said I should have taken it 1 step further and reported him to the Board of Registrations of Physcians. I know this was long what else is new about my posts I'm a wordy girl, but maybe excerpts of all our stories will help mom to get that opinion she needs. Good luck Bryan. 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

              Comment


              • #8
                Re: What to say?

                I thank all of you for your reply's. I had already scheduled my moms appointment before I made this post. She said shes going, its just getting other people to understand WHY she should go. Again I thank all who replied.

                Comment


                • #9
                  Re: What to say?

                  Hey Brian,
                  That’s really great news. Now you will all know the situation as it is today. Let’s hope it was all a tempest in a teacup – but it’s always better to be safe then sorry.
                  Burt

                  Comment


                  • #10
                    Re: What to say?

                    I would simply say "Mom, I would like you to have the best care possible, please see someone who specializes in HCM".
                    I'm glad you're ready set up an appointment and am sure when your mother gets to New England medical Center she will see the difference between a community cardiologist and specialty Center.

                    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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