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Art Geddes Find out more about Art Geddes
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  • Art's story

    Hello people,
    I was first diagnosed with hocm in May of 1975 at the age of 21 after being misdiagnosed in a screening at Stanford in 1973. My mother had IHSS for years and was treated at Stanford so they tested us shortly before I went to basic training and said i appeared to be normal. That was more or less in the early days of echo's so more mistakes were made. Mom had 4 brothers die from scd in there early 40's and in March 75 she had a major stroke from A-fib. She spent 15 years bedridden after that before she finally died from another stroke.She was 52 when she had her first stroke.
    I was symptomatic before this time but no one knew why. I always had a strange sounding murmer and I remember when I had a spinal fusion when I was 14 one resident went into a panic because of the murmer I had and tried to persuade the ortho into canneling surgery, but as an ekg turned up normal they went ahead. When they finally diagmosed me it was because of an abnormal ekg prior to some jaw surgery, which was postponed until a cath was done.
    Following diagnosis I had to give up running, 2 miles a day at that point and the rotc program I was in in college. I ended up dropping out of college becuase I became an emotional wreck for a while and never did finish my degree. But a couple of years later I did become a born again Christian so I have learned that the absolute worst that came happen is dying, but there is no victory of death only victory over death.
    None the less, Hocm has affected us quite a bit. I have been rather symptamatic over the years, syncope, sob, exhaustion and in 1998 saw a noticeable increase in septal thickness and gradient, with an increse in regurg to 2+.. About this time I was admitted through the er with a possible MI but my cath showed clear coronaries. An Holter was done at that time and ddocumented several instances of V-tach in my sleep, so I was admitted again, had an ep and icd put in March 1998.
    Even after the icd I continued to be symptamatic and had meds adjusted and lowered and now take toprol and covera.
    Our plan with teh cardioligist at that time was to start screening our kids when they reached their 15th birthday. On Mother's day 2000 we are getting ready to take my wife's parent's to dinner in Tulsa , (we live next door in Broken Arrow, OK) when I told my wife that I really felt God saying to stay in our town so we made arrangements to meet her folks at the Denny's here. After we had dinner and were walking back to the van our 10 year old suffered a cardiac arrest. Immediatly after he went down we called our fire dept on the cell phone and they were on scene in 1 minute flatThe next thing we did was to start praying and claiming the promises of God for our boy. Thankfully the first paramedic on scene recognized a cardiac problem was defibbed him right off. Our son was then Air lifted to the hospital in Tulsa and the next day was implanted with his icd. during the next year and a half he was shocked 5 times for v-fib and his septal thickness increased to 45 mm. His gradient is 62 both at rest and provoked and he is non obstructed, but he is also inoperable due to the location of his thickening. But thankfully he has now gone 19 monts without any other shocks and has been free of any arythmia. This is a result of God's hand on him. Both of his older sisters have been screened and continue to be followed.
    My son is otherwise a normal 12 year old who is hard to keep down. He doesn't do any sports beside the living room olympics, vaults over the couch, somersaults over the recliner and doesn't know the meaning of "walk in the house." all while taking 100 mg of atenaolol per day.
    I heave a resting gradient of 10 which provkes to over 60 and a septal thickness of 1.9 mm as of two years ago.
    So that is how HOCM affects us, We face it knowing it is not from God, God does not put hocm on anyone, it is not His nature. Sickness and disease come the devil and God uses doctor's and others to help overcome them(even though some of them don't admit it.) I've been viewing this website since 1998 but only started posting recently. Lisa, Sarah I appreciate what you have undertaken and I pray for those here.
    In God's love,
    Art Geddes (sorry for the length)

  • #2
    Art,

    Thanks for sharing your story. I loved the happy ending the most! Your family is blessed. I watched the 11 o'clock news last night and heard that a young boy died suddenly on Saturday in New York. He collapsed during baseball tryouts. He was a beautiful 14 year old, sounded like a child we would all be proud to parent. I didn't sleep well last night. I needed to hear your story this morning...it's something positive.

    My daughter is back off to college on Friday. During Christmas break, she had a syncopal episode in the gym and taken to Hackensack, NJ. On Christmas eve she had an icd implanted by Dr. John Zimmerman, the same dr. that implanted her father's icd years earlier. Lisa, if I'm not mistaken...he's the same doctor that you saw for your dad? I believe we spoke about that on the phone once., but my mind is going!?!?

    We were aware of our daughters disease, she was diagnosed in March 02. At first, the HCM was apical, but had changed by her 6 month follow up just a week before she passed out. The thickness traveled up the septum more & increased to 2.3. Thankfully she was home on break, but soon leaves the nest again and my heart is aching just thinking about it! She's doing great... healing beautifully on the outside as well as on the inside. I know with time i'll more comfortable with her away. I really can't complain...we live in New Jersey and she goes to school in New Jersey!! She is only an hour and a half away...how lucky am I?? Thank god for instant messaging & leaving away messages. I know exactly where my daughter is more when she's at school then when she's home!! And, she has a wonderful group of friends at school which comforts me a great deal. When her girlfriends left our home after visiting...I slipped them drs.#'s, our cell phone # & instructions on exactly what to do if the device fires, etc. As Lisa says......knowledge is power.

    Art, take care. I wish you and yours the very best. We need to keep this family from New York in our prayers. They need strength to make it through without their boy.

    Karen

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    • #3
      you're welcome

      Dear Art,

      Thank you for sharing your story with us. You are very welcome for any help I've been able to provide.

      Never apologize for a long post, or crabby post or any such thing. That is why we are here. There is no word limit!

      Your son is definitely blessed. And it is also a reminder to all of us that it is never too early to start screening your kids when you know the family history.

      take care,

      S

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      • #4
        Yes. Dr. Zimmerman did take care of my dads, bi-Ventricular pacer/defib - not your typical device -
        He is very good and I am glad she was in good hands...just sorry your holidays were so stressful!
        Where is she going to school??
        All the best,
        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)

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