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.

People in my life understand HCM

Collapse

About the Author

Collapse

Lisa Salberg Find out more about Lisa Salberg
This is a sticky topic.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #61
    Re: People in my life understand HCM

    Dear Eileen,
    If I had to, I guess I could match horror story for horror story with you. Suffice it to say that I no longer lived at home after the sixth grade, and became financially self supporting after the eighth grade. I did my laundry in the bathtub with a scrubbing board, and I did my own mending and ironing. As soon as I was legally able to work full time, I held down a job in New York, commuted three hours a day, and went to school three hours a night, five nights a week. Basic training in the Army turned out to be a rest cure for me.

    Right now I have fifteen diagnoses, but thankfully none of them involve cancer. My arthritis is such that I just bought myself a scooter to get around on. About health insurance, there are plans out there that will insure your whole family, especially the families of self employed business man. In New York I worked for a time for Blue Cross – Blue Shield and I know that once a year for a month they had open enrollment. At that time I got a neighbor in whose wife was dying of cancer. I believe pre-existing conditions were not covered until the policy was in effect for six months, but after that everybody was covered for everything the plan selected included.

    Now when it comes to friends – Here you have hundreds of friends. Anytime you feel the need, come post a message and you’ll get more support and understanding then you can imagine. And finally, the piano. I love the piano and taught myself to play – after a fashion. I figured out the keys for the melody and would play that with both hands, an octave apart. Try it, it doesn’t sound half bad. I would have played by ear, but I have a tin ear and that just wouldn’t work. (I would have played by nose, but I am not near sighted.)

    Anyway, welcome to the site. Given half a chance you will learn to love the people here as I do. They are among the very best this world has to offer.
    Burt

    Comment


    • #62
      Re: People in my life understand HCM

      Hi Burt,

      Wow, you had it tough. God bless you for all that you have been through.
      My father was violent, at times he would threaten to kill my brothers with a baseball bat. And to this day I cannot watch violence on TV or at the movies. It is too disturbing. I go to therapy to help with my childhood and my heart condition.

      About insurance, my husband and children are covered by insurance. If I can remember correctly Blue Cross - Blue Shield did not turn me down, but the montly premium was almost $1,000 a month because of the cancer and heart defect. I just figured I would save my money and see the doctor. That was some years ago however, I should call them again just to see.

      I'm sorry to hear about your health problems. I would love to have a scooter. One of these days I'm going to get one, I need one now.

      Thank you for the wonderful welcome. It is so nice and comforting to hear that I have support. I thank you all for that.

      Hugs and Smiles
      Eileen
      49 yrs. old
      Diagnosed at 31.
      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
      My brother passed away suddenly at 34 yrs old from HCM.
      2 teenage children, ages 17 and 15.

      Comment


      • #63
        Re: People in my life understand HCM

        It is amazing how people judge you on how you look on the outside and not how you feel on the inside. Since I have been disabled since 1993 for all my other medical conditions, I clearly know how you all feel.

        First and foremost not only doesn't my family care to hear how lousy I feel lately including so fatigued, my husband is in total denial. He thinks now that I have the defibrillator I am good to go. I always said he was from the Wizard of Oz and still has not found his brain.......

        My adult children do not want to discuss it. At least my 2 1/2 year old granddaughter is concerned. She wants to know if Grandma's booboo is better. When I tell her not yet, she tells me I will take you to the doctor and make him make it better. Pretty sad when a baby gets it and adults don't huh?

        I love the looks I get when I do get to go out and park in the handicap spot. Boy do I get dirtly looks. Just aggravates me to no end.

        It isn't bad enough that I am just accepting that I have this disease, after four years of denial. To deal with my family in denial is not cool. So right now I am extremely frustrated and tell them all where to go.

        Sorry to vent but at least here I know I am not alone and you all know how I feel. I am just sorry to hear how many of you feel as lousy as I do. I wish you all well.

        Comment


        • #64
          Re: People in my life understand HCM

          Hi Eileen.
          I got the Golden companies Buzz Around scooter, and I love it. It is small enough to fit into the trunk of my car so I avoided the expense of a tailgate rack. Broken down, the heaviest piece is 39 pounds, and after shopping the internet, I got it for just pennies over nine hundred dollars. (Try a Google search.)

          Virginia,
          Personally I don’t give a damn about people who expect me to be a different color or visibly crippled to use the handicapped spots. (I’ve even had two old ladies complain to the store owner about my using a spot, and wanted them to call the police on me.) My comment to them was, “Your handicapped placard is no better then mine.” If the state agrees that you deserve it, that’s all anybody should ask.

          Of course in LA there was a black market in placards, if for no other reason then you are excused from paying parking meters with one. That brought a few jaundiced looks at that time, but I hope that problem has been resolved.

          In regard to your husband not being supportive, why not take him to your next cardiologist appointment and let him ask some questions about your condition. Maybe that will be all that is needed to get him on your side. At least I hope so.

          HCM is not an easy condition to deal with – as are many others. Thankfully, if properly treated, it usually does not carry a death sentence, but it still takes a lot of understanding to appreciate the difficulties involved. Lots of people still believe that if you ignore something it will go away. If you get your husband on your side, maybe the rest of the family will follow. Don’t throw them away too quickly; it took you years to accept it.
          Burt

          Comment


          • #65
            Re: People in my life understand HCM

            no, because not that many people know about and the general public is not informed of this disease. Had a teacher of my grandaughter's say that your dad couldn't have died with that it only affects athletes. Daughter in law straightened that educator out.

            Comment


            • #66
              Re: People in my life understand HCM

              I am ashamed to say that none of us understood HCM. That's why I feel so guilty over my son's death. It took his dying for me to find this website and to really understand what a nightmare this disease can be. He never fully understood either...or he would never have lived life at the pace he did.
              Linda G
              Son died of cardiac shock second to HCM at age 36.
              Live Well...Laugh Often...Love Much

              Comment


              • #67
                Re: People in my life understand HCM

                Wow, I am SO glad I found this group! I cannot say it enough...

                Whether or not I ever get approved for disability, I swear I am going to have a 31 piece set of T-shirts printed up, one for each day of the month, with a few to spare some months.

                The front will say, in big letters, "Yes, I really Do have a big heart!", then underneath in smaller letters, "but it's not always a good thing, HCM can be disabling!"

                And the back will read "Do not discriminate against, nor follow too closely, the backside, either! I have also been diagnosed with chronic collagenous colitis!"

                Seriously, I must admit that I used to have my own ideas about what constituted a "real" disability, or not. I guess it's because of my military upbringing, and also in a former job many of our clients were receiving disability, and many I am sure were healthier than me. It just goes to prove you cannot always judge a book by it's cover! Not everyone has to be in a wheelchair to need help!
                Family history of HCM and SCD
                Multiple symptoms but misdiagnosed over the years
                Finally, diagnosed correctly after multiple tests
                HCM gene test positive June 2009
                Single lead ICD implant July 8, 2009
                Dual lead ICD replaced May 2013

                Comment


                • #68
                  Re: People in my life understand HCM

                  I don't expect too many people around us to understand HCM because many doctors don't understand it. I did give my mom and dad Lisa's book to read. They have been reading it and asking good questions. I, too, have learned a lot from the book. Thank you.
                  Christie Dalton diag. 3/27/07: ICD on 4/25/07.
                  Son diag. @ 6 and SCA at 8. ICD on 9/1/06.

                  Comment


                  • #69
                    Re: People in my life understand HCM

                    I would have to agree with you all not too many people understand about HCM or want to. If they are not saying that you are fine then they are doing the other saying you are not allowed to do anything and you should be in bed. I get both all the time. My mother and sister are the two that tell me not to do anything and to stay in bed.
                    I was lucky enough that my family Dr who knew nothing about the condition read everything she could to make the right choices as to which cardio specialist would be best for me. I have suffered from one condition or another all my life so when I told my family that I am going to need heart surgery they just more or less shrugged it off saying that they where just waiting for something else to go wrong.
                    My mother has been my biggest supporter in teaching everyone she can about the condition and letting everyone know it will not just go away. The best way I can say it is I was born with and I am going to die with it. Not from it. As to getting the word out there about it.....here in Canada you mention it and people are more interested in learning about it and what can be done about it. I am glad I live here.
                    Smile and Enjoy Life no matter what!!!

                    David

                    Comment


                    • #70
                      Re: People in my life understand HCM

                      Hello everyone,

                      I am so glad that I'm not the only one hearing all this. Even before I was diagnosed, I was showing symptoms and none of my doctors could figure out what was wrong with me! They diagnosed me with panic attacks! I had to see a shrink -- they even told me to see a neurologist. Then they found HCM in my dad when he had his gallbladder out. "Oh maybe you should be tested" is what I got.

                      I definitely feel your frustration!

                      And no one understands.

                      Kris
                      Diagnosed HCM 2007
                      Sycope/Obstructive sleep apnea 2007
                      Daughter Lex, 6 yrs old no signs!
                      Father diagnosed HCM 2007

                      Comment


                      • #71
                        Re: People in my life understand HCM

                        I give people the quick details that it is a heart disease, limits physical activities, and so on. But I do not feel many truly understand it. They either think it is terrible because it is a heart condition, think I'm fine because there's no symptoms, or think that it will eventually go away. My mother seems to understand. My best friend might, but since he is scared for me he dwells on the worst results of the condition. So, for the majority, I have to say no.

                        Comment


                        • #72
                          Re: People in my life understand HCM

                          Hi:

                          I wanted to pick up on this thread because I have been running into some of the same strange looks and questions that non HCM'ers give us when we try to explain what's up.

                          From my standpoint, I get very frustrated because I get those "quit your b-t--ing" looks and yes I have been guilty of bemoaning my situation. I just reread a posting that Lisa did a few years ago and she's right you've got to get on with your life no matter what. I am sure we all have models in our lives we can look at as folks who are undergoing alot more physically than we are. I think the variability (in my case) of the condition is what bugs me the most....some days I come close to feeling normal and to all around me life is great. Then comes one or a few of "those days" and all the good days are forgotten (by me), rather quickly.

                          All that said I sometimes don't know how to respond to the normal "How are you doing today" greeting.

                          Should I be honest and say "Well really today I feel pretty Sh-tty". Or, should I say "are you talking about my emmotional or physlical state"? Or should I just do what most of us do most of the time I suspect and say, "oH, I'm feeling pretty good" and let it go at that.

                          I just talked to a young lady who used to work for me and has become a good friend over the years and has suffered from breast cancer which is in remission...she and I agreed that the best answer to the question "How are you doing today?" Is "let me turn up my hearing aid so I can hear you"

                          We'll enough of my ramblings....for the outside world "I feel marvelous" to the HCM world....today I feel about 50/50 and I know your hearing aids are turned on.

                          Have a good week everyone and god bless this forum.

                          bucky
                          Last edited by Bucky; 03-30-2008, 08:04 PM. Reason: grammer
                          Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

                          Comment


                          • #73
                            Re: People in my life understand HCM

                            This is really a struggle answer for so many of us and you know while we are education minded about HCM we must become very familiar with our audience and often quickly realize that THE REAL ANSWERS are not what is sought by the majority of our inquirers. Really only those who have a vested interest in our illness really need to hear or want the details...

                            AS of late I have said "so, so," while nodding and have only been asked to define "so, so," 1 x. My uncle died and was buried on Saturday so I had the opportunity to test this new response and a few others on many relatives. As you also have the same response, MANY say, "Well.. you look real well."
                            My response is.."thank goodness my face is not a reflection of my heart!" That response gets a chuckle and then a head tilt w/ a sort of.. gee I should have had a V-8 look from most and then they say, "Yeah... Right.. I get you!"
                            Some hear from the family grape vine that many trips are made for medical care and and I respond, "Yes where else does one with a lot of heart complexities go on a regular basis." If they say, "that is too bad," I say, " Actually it is a very good thing that there is a lot of medication and treatment that they can try on me and others with this very diverse disease called HCM, I am always hopeful."

                            I think picking carefully and choosing your response well can make a difference in how thirsty someone may become w/ regards to what the real PICTURE is about HCM and how we are effected. Many times I have realized that people are more interested in learning about the disease called HCM vs getting into an emotional posture and to deal with how they may be concerned for me . I have learned to flip them this way in my conversations and it is often most effective.
                            Soooo...It is a tough thing this HCM stuff and I think you will find over time that those who are really invested and those who want to know and learn the most WILL seek you or a family contact out to learn and inquire. AS for the rest ..and there are a lot of those.. we have to be hopeful that something may inspire them to seek REAL answers and it may just be each of us and how we portray the FACE of HCM.

                            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


                            • #74
                              Re: People in my life understand HCM

                              Well, today is not a good heart day for me. HCM-wise, I feel pretty good but my heart aches for other reasons. It it aches with the fear and frustation HCM brings with it...

                              I spoke with my cousin this morning. Her 7 year old daughter got her DNA test results back. She is positive for the HCM mutation that runs in my family. She's the first child in my family to be identified. I can't even begin to describe the devastation I seem to feel at this moment. I hadn't anticipated this - somehow it's just different when it's a child.

                              If this wasn't hard enough, my Aunt was admitted to hospital on Friday. She has HCM and suffered a very debilitating stroke a few years ago. She's now been told she's suffering with Heart Block. I have done ALOT of reading on HCM but this is the first I've heard of Heart Block being an outcome of HCM. Does anyone have any insight on this?

                              Anyway, thanks all of you out there, reading this...just being able to share has helped...

                              ~Lindsie

                              Comment


                              • #75
                                Re: People in my life understand HCM

                                Biokemkid,

                                Complete heart block is rare in HCM but does in fact happen. Here is one article.

                                http://www.jstage.jst.go.jp/article/jhj/45/2/347/_pdf

                                It is not uncommon to have first degree heart block and HCM, I have that and that said there is always the risk of heart block progression to complete. Some of us have more electricle involvement difficulties than others with our HCM.

                                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

                                Working...
                                X