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Ups and Downs

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Nigel Find out more about Nigel
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  • #16
    Re: Ups and Downs

    Hang in there Nigel,

    Many of us have seen the inside of that dark closet before. Just remember to come back out so we can all be here for you.

    Thoughts and prayers.

    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


    • #17
      Re: Ups and Downs

      I know how you feel. I was also never told it was my heart, it was always asthma or arthritis or allergies. Im also young, i'm 17, was diagnosed when i was 16...it was definatly a huge shocker...and most of my friends understood but some didnt. it was hard to expect them to understand, hard to believe that they did when i knew they had no idea how i felt, and i didnt understand myself.

      we can all say we understand, and to some degree we do...but we all have a different story and were diagnosed at different times with different histories.

      if you wanna talk im here...like all the others, i know...haha but yeah i'm here, love!
      ~janelle*
      \"The heart swells at the magnificance\"

      1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

      Comment


      • #18
        Re: Ups and Downs

        Nigel,

        I hope you will recognize that all of us would like to hide in dark closets sometimes, but that in fact nothing changes in the closet. More importantly, nothing has changed since you got the official notice. So, we hope you will soon come back and share your findings and move ahead to get some help. Meanwhile we will wait for you, miss you, and pray for you.

        Rhoda

        Comment


        • #19
          Re: Ups and Downs

          Nigel,

          I know honey, I have been in that dark closet too, crying my head off.

          Sometimes you have to let it out, BUT you need to come back too. You still have a life to live. Yes, you will have your limitations, but there still is so much you can do.

          There are many people with HCM that live a long time. My mother is 65 years old, she has HCM, AND she works full time. My grandfather who had HCM lived to be in his late 60's.

          This disease effects everyone differently.

          You did not do anything to cause this or make it worse. My brother was diagnosed at 10 years old, and he never drank or partied or did anything like that and his heart was in bad shape, he was born that way, yet my mom is still working at 65 years old with HCM.

          There are times when I get very sad, and there are times when I am really angry that I have HOCM. These emotions are normal when someone has a heart condition.
          We are here for you. Please, when you can, let us know how you are doing.

          ((((((((((Nigel)))))))))))

          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


          • #20
            Re: Ups and Downs

            The dark will not make it go away, nor will worrying about it. I know this is hard for you, we have all been there, the first few weeks and months are very hard to adjust to.
            We are here, we understand.

            Call the office, we can talk and get you on the path to taking care of that big ole heart of yours!

            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


            • #21
              Re: Ups and Downs

              Today’s Up:

              I called Lisa today and had a wonderful conversation. It turns out, there is indeed a doctor here in Oklahoma that can help better evaluate my condition and set me up with an ICD.

              Right now, I’m working on getting my insurance to pay for a visit (I have Medicaid). Hopefully that will all go smoothly. If not, Lisa told me she’s really good at yelling!

              Today’s Down:


              I had another conversation with my father as he doesn’t quite seem to understand what’s going on. He is supportive, but he doesn’t understand that my heart really isn’t working how it should. When I was 16 and living in California, this doctor had told my parents I was suffering from an anxiety disorder. I don’t think my father has ever come to realize that anxiety and true medical conditions can coexist.

              My mother on the other hand sent me an email explaining that she was bringing my latest test results to a local cardiologist back home in the Bay Area. I don’t understand why on earth she would consult someone who was never able to figure out my condition.

              I don’t blame my cardiologist back home, or my GP for that matter. I feel the error occurred when the pediatric cardiologist I was sent to see overlooked the fact that my E.F. was 88% with some thickening on the echocardiogram. From there, it was a domino effect. One doctor says your fine, all the rest agree. GRRR

              In a way, it’s truly a blessing I moved to Oklahoma. If I had not, who knows what would have come of me. For some reason, the doctors seem a lot more with it too!

              I wish you all the best; your support has been wonderful.

              Nigel

              P.S. Burt, you’re too funny…. If you make me laugh any harder, I might just fall over.
              I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time I’ve had with you.

              Comment


              • #22
                Re: Ups and Downs

                I'm really glad you had a much better day! The anxiety disorder might've been HCM all along. It's hard to say at this point. In the meantime, talk to your mom about this being a genetic disease and the fact that your little sis needs to be screened periodically, like every year. Have a great night!

                Reenie
                Reenie

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

                Comment


                • #23
                  Re: Ups and Downs

                  Sorry Nigel old boy,
                  But to me ‘too funny’ is a contradiction in terms. I wake up in the morning and the first thing I do is to take my pulse. If I have one – I’m happy all day. (OK folks, for those of you who have read this from me before – I am not going to mention how I get my heart started if there is no pulse – you’ll either have to remember or ‘search’ it up.)

                  Nigel, one of my fifteen or sixteen maladies is Familial Hyperlipidemia – which according to my cardiologist usually kills people off in there fifties, so I’m already twenty years ahead of the game – and I’m still playing.

                  Also, according to Lisa, finding out you have HCM for most people is a very trying experience – for me it was a revelation, answering so many previously undiagnosed problems that it was a great relief.

                  I plan on living a long time yet, so if I find somebody throwing dirt in my face, I’m just liable to throw it back – can you picture it? I bought cemetery plots for my wife and I and I wanted to put up pictures of us with the sign “Coming Attractions” but they hit the roof. I claimed it was my land now, and I could do what I wanted – and threatened to put up a lemonade stand. - - Geez, talk about stuffy.

                  Take care my friend,
                  Burt

                  Comment


                  • #24
                    Re: Ups and Downs

                    For me, I feel like a huge burden has been lifted off me. I forgot to tell Lisa on the phone today, but my family has spent so much money on medical bills!! We spent all this money on doctors that couldn’t even take the time to look at my echocardiogram a little closer. I felt like it was my fault and that I had done something wrong.

                    Now I know this condition is genetic. I've had it all my life. After all the biking, running, ect. I've done, I'm so lucky to be here.

                    As you know Burt, I'm into computer hardware and design. I wonder if all the radiation I play with will be bad for an ICD. I leave the side panels off all my systems.

                    A few pictures of my office:





                    It's the infamous boy!

                    I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time I’ve had with you.

                    Comment


                    • #25
                      Re: Ups and Downs

                      hey, just out of curiousity when you say bay area do you mean in maryland? haha cuz thats where i live D
                      ~janelle*
                      \"The heart swells at the magnificance\"

                      1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

                      Comment


                      • #26
                        Re: Ups and Downs

                        Hey Nigel,
                        That looks like some pretty cool stuff. However it is my son who is into PC’s, I’m sill a duffer on that score. (Actually he just increased the memory of his laptop to two gig.) He is pretty deeply into it, knows many languages and is certified by Microsoft.)

                        My career was with what is called “Main Frames.” You know, maybe 68 swappable double density disc drives and a tape robot that holds thousands of tapes and can handle the mounting and dismounting of eight tape cartridges simultaneously. The main frame in California filled the whole floor of a pretty big building, with back-up systems to New Jersey in the event of an earth quake – including on-line processing throughout the country from California to New York and Washington to Florida. You know – The big stuff.

                        Anyway, it looks like you have some pretty cool equipment. I love the clear plastic cases too. I’ve heard of ICD’s and strong magnets not getting along very well, but then a strong magnet wouldn’t do a computer much good either. I expect the final arbiter would have to be a knowledgeable EP on what you can play around with up close and personal. Frankly, I just don’t see you in an aluminum vest. You probably are faced with more radiation in front of a TV or monitor then the computer – but as I said, it’s always best to check with your EP.

                        By the way Janelle, The Bay Area Nigel is referring to is the San Francisco Bay Area. Wrong coast - Wrong ocean – but absolutely the Right country. I have been to, and love both area’s, - but they are not what you might call interchangeable or even similar.
                        Burt

                        Comment


                        • #27
                          Re: Ups and Downs

                          Those are some pretty cool pictures! Also nice to put a face to the name.

                          Reenie
                          Reenie

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

                          Comment


                          • #28
                            Re: Ups and Downs

                            Well, that's a rather bad picture. I need a haircut asap.
                            I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time I’ve had with you.

                            Comment


                            • #29
                              Re: Ups and Downs

                              OK mr. computer dude... how did you get pictures in the posting? Tim is this part of the upgrade?
                              Very cool!
                              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


                              • #30
                                Re: Ups and Downs

                                There is an "Img" button... I think it's really cool. You push the image button, and then insert the image link. Then, you bush the image button again and your all set.

                                The best part is, the images can be on another server, so they don't use any
                                of HCMA's bandwidth.

                                Here is another of my cat:

                                I push the image button, insert the link, and then push the botton again.



                                In the future, I think this feature could prove extremely helpful. In a private section of the forum, a member could upload their latest medical records for prompt evaluation. The quality available is superior to a fax machine and most people have scanners/digiral cameras.

                                Just an idea…
                                I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time I’ve had with you.

                                Comment

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