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Long week!


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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • Long week!

    How I wish I were giving out good news like everyone else. But I guess when the time is right I'll have some.

    At the advice of my primary physician I went to the ER on Monday night because I was not feeling any better. Well the news wasn't so great. Yes, I was in CHF only mild but still in it. My arm, well it has a ton of blood clots. Including partial occlusion of my jugular vein. I am not happy about all of this especially having to take three times the drugs I was taking. Having to inject a blood thinner into my stomach twice a day sucks and I am on coumadin for the next three months. I am also permnantly on Lasix as well as my Isrdil being doubled. It has taken a lot out of me but i guess I should be thankful I am still here and able to get out of the hospital. I'm just trying to find a little good news right now but its not happening.

    Just thought I would let everyone know how I'm doin!

    mary S.

  • #2

    I'm saying a prayer for you that you will get your health under control. I know it's difficult, but try to take it easy and not do too much.


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


    • #3

      Dear Mary,

      I'm so sorry. That really, really stinks. I will be at this convention all weekend, but I'll be home at night (probably!) if you want to call.

      I hope you have filed a complaint with that stinky hospital so you don't have to pay for any of the treatment for the arm.

      Hang in there! Hey, it is going to SNOW here tomorrow, so just be thankful you are in Florida for a start.

      take care,



      • #4
        It is sunny in NJ... does that count as good news.. ( I tried! )

        I am sorry to hear this turn of events... any clue what caused the clots?

        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)


        • #5
          The docs believe it was a combination of an allergy to phenrgin and an infiltration. He said it could be cleared up though which is good news. I gave Dr. Maron a call today and see what his imput is on this mess. Especially as far as the CHF is concerned. They did start me on potassium as well just like you said Lisa mine dropped dramaticaly.

          Right now I am going to sleep. I think every drug I am on right now has a side effect of dizziness and sleepiness. I can barely keep my eyes open! I'll let you know how things go as far as that other hospital.

          Oh yeah the weather is a high of 88 without a cloud in the sky!

          Mary S.


          • #6
            Hi Mary,

            Sorry about the set back. I'm glad they figured out what was going on. I remember Roy when he got those injections in his stomach - it hurt.

            You will be posting some good news in the near future - I know it. I'm so looking forward to your nursing news!

            You take care - think happy thoughts.



            • #7

              my ex-hubby had to learn how to do them on me. He was freaked out.

              I live alone, but my bf's apartment is, um, next to mine. So if (god forbid) I have to have them again, I've got someone to press into service.

              Mary ---we need to hook you up with someone nice who can give shots!!



              • #8
                Ya know a cute firefighter would be nice

                I have faith that things will get better. It will just take a little while. My only problem now is finacial burdens. I have not worked in about a month and for some reason down in Florida money doesn't grow on trees. Prescriptions costed 80.00 and electric is due. I had to make a choice which kinda sucked.

                I would kill for a REALvacation. Unfortunatly, it will have to be next year. Thanks for listening to me whining about my life. As my cardiologist reminded me there are people a lot worse than I am and I should be thankful that my heart condition allows me to be close to normal. Easy for him to say but at 22 it does become too much sometimes.

                Mary S.


                • #9
                  Mary, hope things are improving for you, Linda


                  • #10
                    Mary, I'm so glad your finally getting things figured out. I'm sorry that you have to deal with the shots and all of the rest of it and I will add you to my prayer list.

                    Is their a possiblity that the electric company has any programs to help you? In Oregon and I'm sure in other states there are ways to get help with utilities? Also is there any family that can help with financial assistance while you go thru this? Please forgive me if you have posted about these things in the past and I have forgotten.

                    Your in my thoughts.



                    • #11
                      Re: Long week!

                      I hope you start to feel better very very soon!