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Rough Week!


About the Author


Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • #16
    Re: Rough Week!

    Mary so glad your doing better. I hope your getting some rest now.



    • #17
      Re: Rough Week!

      Hey Mary glad your doing better . I am going to post this to also let you know you arent all alone with problems .as you know in feb i had trouble with v-tach and v-fib spent 10 days in hosp getting back in rythum.Then in April thought i was having a stroke ,it turned out to be Bells Palsy (its better than a stroke but still not good).and for the last 3 months i have been having some vision problems ,thought i just needed new glasses but it got real bad in 1 eye so i went to dr who sent me to specialist and i have some kind of bleed that is stopping my vision from being clear in left eye,so now i get to go see another specialist to find out what is what I gues we all have some kind of Chronic body failures going on so stay in stride and dont let them get you down
      Allways remember you cannot control the wind!!
      However you can adjust your sails!!


      • #18
        Re: Rough Week!

        More wonderful news! Yesterday when I got up and took a shower I happened to look down at my matching scars AICD (left) medi-port (right). I almost passed out in the shower. the medi-port incision had opened and I could see the port sticking out. So I had to go back in to the surgeon and have it resutured awake this time. I had only had stitches put in while i was under anesthesia so I was freaking out. Thank God he put the sterile field over my head or I would have bolted I think. My shoulder that I sprained it where all of this wonderul stuff is happening and it hurts like the Dickens.

        Oh well, enough of my belly aching. Lisa, I am so sorry to hear about your mouth that is not good. I am thakful that my heart is behaving lately just the rest of me is falling apart now!

        Lisa, I just got a PM from Tommysgirl and I am extremly concerned. I think it needs to be brought to someone's attention on what is going on at UF. I think someone is going to get hurt or worse if this is not brought to someone's attention! As I read her message it was so eeriely familiar that I was shaking. I got lucky I found you first but other's aren't we have to get this out in the open. Anything you can think of I will help do! THIS HAS TO STOP!

        Mary S.


        • #19
          Re: Rough Week!

          I have said before in many situations if you are concerned over the care you have received you must document it and submit it to the appropriate people. Hospitals want to give good care... if they do not know where the problems are they can not fix them.
          I am sorry to hear that you have had such a rough go of it latley...keep looking up...it may be tough but it is workable
          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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