If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Getting message across

Collapse

About the Author

Collapse

Ad Find out more about Ad
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Getting message across

    As HCM is usually inherited - in my case it is - it is important to locate other family members that may be at risk.

    In my case, those would be the children and grandchildren of my mothers sister - three of them with five children. So far, beginning with my uncle (who survived my aunt), the response has been 'lukewarm'.

    Now i understand it isn't a good message but i have a feeling that the importance is (willfully) ignored. Has anyone met the same resistance in bringing the message that screening may be important?

    Note that i'm not talking about convincing: i do not consider it my responsibility to follow through until family members are actually screened. Just making the point seems to be difficult enough.

    Ad
    \"Hope is disappointment postponed\"

    Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

    Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

    Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

    Meds (current) sotalol, dabigatran, furosemide.

  • #2
    Ad,

    Within my own family (extended family) I have people who will not 'believe' that 'this disease' had actually killed one of my family members. It is highly frustrating in that the portion of the family that will not 'believe' has several children and they are all at risk. We can provide information, we can help them understand but to change a person - well lets just say you would have more luck attempting to change the path of the Mississippi River.

    We can try, we can do our best, we can hope, we can pray we can show them the fact but until they are ready to take action we can not do anything.


    Keep up the fight - but do not be too hard on yourself.

    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


    • #3
      My sister has 4 children of her own and has no interest in screening herself or the kids; my brother is not married but claims he will follow up.

      Two primary human reactions at work here:
      • No symptoms = No concern
        Heart problems are self-inflicted

      My brother was hospitalized – many years ago with some sort of infection of the pericardium. He healed and is fine today. But the concept of a screening for HCM doesn’t sound so absurd to him since he has already been treated for a peripheral problem with his heart.

      My sister has no health issues that I am aware of. Her kids are healthy and active in sports. She’s sorry that I’m in this situation, but can’t understand why I would suggest that she and her kids get screened. Though she hasn’t verbalized it, I know she is saying . . . “if you hadn’t partied so much in college you wouldn’t be in this predicament today.”

      Frustrating indeed!
      • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
      • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
      • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
      • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
      • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
      • 2011: Brigham & Women’s - Medtronic ICD implant

      Comment


      • #4
        Hi Lisa,
        I think you chose a rather poor analogy there, since we have been controlling the course of the Mississippi river for some time now – what with dykes and levees and all. That said it isn’t all that difficult to get all your blood relatives to get an Echo and EKG.

        It is rather simple actually, providing these simple rules are followed.
        First, depending on the number of relatives involved, you hire a football squad or two, so that you have at least three squad members for each relative to be tested. Second, you abduct them all. It is very important that you do this all at the same time. Otherwise some of the relatives might catch wind of your plan and evade their football squad entirely.

        Then you hold them incommunicado for a day or so, totally restricting their food intake. This can get rather tricky on two counts. First they must be stripped of all cell phones and other communication gear before they have a chance to use it, and secondly, all junk food, candy and such has to be confiscated so that the diet restrictions will work properly. (This is one of the reasons you need that third squad member – two to hold them and one to search.)

        After they have been properly ‘restricted’ you give them the opportunity of taking the tests and being released. If any of them refuse, they all must be held for another day and then given the opportunity to take the tests again. It is a good idea to let them all know that it is an all or nothing situation. If one refuses they are all held another day. We call this ‘group incentive’ bargaining.

        Now, once they all agree, you bring in a doctor, technicians and the proper equipment and have the tests administered to everybody – then they can be released – but it is advisable to get out of the country before they have a chance to sic the cops on you.

        So you see, you can get all your blood relatives to agree to be tested, and it only takes a few days overall. It’s either that, or letting them make their own choices, no matter how silly it may seem to you. By the way, I’m sure if you told the judge that you did it ‘for their own good’ all charges against you would be dropped. Either that or the politicians (who understand this concept thoroughly) will get you a pardon.

        So you see, it all works out in the end.
        Burt

        Comment


        • #5
          OK Burton - I am thinking oxgen issues again

          Big hugs!
          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


          • #6
            Burton,

            Football American style is not 'that' popular on the other side of the big pond. So this course of action is not available to me

            Ad
            \"Hope is disappointment postponed\"

            Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

            Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

            Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

            Meds (current) sotalol, dabigatran, furosemide.

            Comment


            • #7
              Think rugby.
              --Living life on the edge .. of a continent!
              Charter member: Tinman Club

              Comment


              • #8
                Hi Lisa,
                You don’t have to worry about my oxygen levels young lady – I have a spare closet just full of the stuff.

                Actually I found out today that I have an excellent excuse for these ‘asides’ (if you will.) I finally got seen by the stroke specialist / neurologist today and found out some rather startling information. Remember I spoke of getting an MRI of the brain last September (actually turned out to be early October) because I was getting a bunch of headaches?

                Well the doctor in the hospital advised me to be seen by a stroke specialist, and after dancing around with the insurance company, I finally got to see him today. I had reported here that I had a stroke in June 2003 that had completely cleared away, but what I didn’t know was that I had, and am having, a whole mess of strokes (mostly in the white matter where it doesn’t show any effects, - but there are dozens of them.)

                As it turns out, the things I have been doing to get my diabetes, lipidemia, kidneys, heart, and arterial blockages under control – along with some other conditions, - were exactly the things I should have been doing to prevent further strokes. There are a couple of other things also – which I will be starting now (drugs that is) – so I hope to have this under control also pretty soon.

                While there a funny thing happened. The neurologist referred to a large study fairly recently conducted by the Cleveland Clinic which identified another trigger for getting strokes. He then said anything done by the Cleveland Clinic is head and shoulders above the herd – so I guess this is just one more indication that what we have been saying on these boards is of value. Then, believe it or not, he went on to include both the Mayo Clinic in Rochester and Tuft’s NEMC in Boston as equally high on the chart of exceptional institutions – and this is in neurology. I guess when you’re good, you’re good all over.
                Burt

                PS - If I am not mistaken they play ‘football’ in England and on the continent, and while it is not the game played here in the States, it is still called football. – I do believe those boys from the scrum will also do admirably for the purpose at hand.

                Comment


                • #9
                  Hmm, I had assumed 'football squad' meant "manly men"--hence North Americal football or rugby, not English football

                  Rob
                  --Living life on the edge .. of a continent!
                  Charter member: Tinman Club

                  Comment


                  • #10
                    screening

                    Hi,
                    I have not been able to get all of my family to take this disease seriously neither. Even though I have it, my mom has it and my daughter has it. I have one sister who refuses to have her children checked, and the other sister who said since her kids were fine at age 10 they are still fine. She doesn't get checked again either even though they told her that she had a murmur.
                    I guess there is no way to force family members to get checked. Although I was there was lol.
                    Life is too short to worry about the trival things in life, So live life to the fullest.

                    Comment


                    • #11
                      getting message across

                      Dear Ad,
                      I thought I was the only one with the hard headed relatives! It hurts and its frustrating. I have told my family but they don't care and not knowing makes them feel better. My 12 yr old daughter died last summer from hcm. First sign and I have spread the news like wildfire and they don't care. I take it they don't care much about Sarah or they would listen and find out. They spend no time listening. I just pray for them and go on with my life and tell people who will listen.
                      Laura Friend

                      Comment


                      • #12
                        Well my family joins in also, even though my dad says he has concentric hypertrophy he does have it so, he says you had to get it from your mom and she died of cancer and the doc said she lived as long as she did because of her heart, my half brother died from then IHSS and i have it also and the only thing we have in common is our dad, even though the tech said he had it he continues to say no he doesn't and so does the rest of the family, oh i had one brother that refuses to believe i have the disease even though i have had a myectomy, i told my husband if something happens to me i want an autopsy performed on me and send the family the report

                        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


                        • #13
                          Dear Laura Friend,
                          Thanks for posting to the board. I was wondering how I would be able to tell you that your daughter did not die in vain. Although you sometimes think that you are talking to a brick wall with your relatives, (as many of us do) there are those who have been moved by your daughter’s story, and lives may have been and will be saved as a result.

                          And don’t think that your admonishments have fallen on totally deaf ears either. Although your family appears not to know or care, if they ever have any symptoms you can bet that they will be going for a complete check-up. It’s the kind of thing everybody would like to ignore, and with no symptoms they feel safe, but they are sensitized to the condition none the less, and any symptoms will send them for help. I don’t know what else to say, except thanks again for your post.

                          Shirley,
                          We’ve talked about your and your father’s situation. If you take the actions we discussed there is a good chance that progress will be made for both of you in the near future – and for Ken too for that matter. Take care,
                          Burt

                          Comment

                          Today's Birthdays

                          Collapse

                          Working...
                          X