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Wish me luck!

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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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  • Wish me luck!

    Well, it seems I am still having a lot of problems with the blood clot issues. I have formed more in my right wrist despite the coumadin thereapy and my left arm has all but given out for needle sticks and IV's so on Friday I have to go and have a medi-port put in. The surgeon said it is a bit more dangerous for me because I only have one sub-clavian vein that is useful and it happens to be on the side where the clots were. My other vein houses the leads for my ICD so he is concerned about the clots. I'm a little scared of surgeries these days with my record and all. Does anyone have any insight on living with one of these? And of course my right shoulder is already painful because of my fall last night. I guess on the bright side I'll have two matching lumps on my chest one from the ICD and one from the port!

    I'll keep everyone posted! Keep me in your thoughts!

    Mary

  • #2
    Re: Wish me luck!

    Mary, I wish you all the best. Please keep us updated.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Wish me luck!

      Mary, best of luck, I know you'll get thru this with flying colours.
      Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
      So if you are capable of thought then you are capable of great things
      Good luck and stay well.
      Glen

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      • #4
        Re: Wish me luck!

        Dear Mary,

        Ouch. I'm so sorry you are having to go through this crap. I don't know anything about your procedure, but I hope it goes well. Please keep us posted.

        take care,

        Sarah

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        • #5
          Re: Wish me luck!

          Good Luck Mary....Have Faith! My prayers are with you.
          Tammy

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          • #6
            Re: Wish me luck!

            Good luck Mary!

            My mom had a port put in a few weeks ago for chemo therapy. The only "problem" she has had is if she accidentally hits it. I guess like an IV when you hit it wrong. ouch. So take it easy and take care.

            Matt

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            • #7
              Re: Wish me luck!

              Mary,

              Best of luck with the procedure! Keep your chin up

              Jim
              "Some days you're the dog... some days you're the hydrant."

              Comment


              • #8
                Re: Wish me luck!

                Well, for some reason the surgeon is skiddish about doing the procedure now. He wants a letter from the cardiologist as to why I need it. He doesn't want to be responsible if more blood clots form and I'm high risk because of my heart condition. When was the last time a healthy person needed a port This is just the way Florida has gotten because of malpractice insurance and I am afraid it is only getting worse from here on out .

                So I guess it is back to the drawing board. I'm pretty much down to my last vein. I wonder what they are going to do when it finally goes too?

                Mary

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                • #9
                  Re: Wish me luck!

                  1. I lived with one for 8 weeks in 1990 for my endocarditis - not that bad really - not that good either but there are much worse things in the world.
                  2. I am not 100% clear on why they are doing this...did you talk to your guys in Boston?
                  3. GET WELL SOON

                  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


                  • #10
                    Re: Wish me luck!

                    Sorry I haven't gotten back to you guys about this. It has been nothing but a break neck week for me. Disney has been working me about fifty hours a week and it is getting the best of me. On the two days I did have off this week I went into CHF again because the nurse at the cardiology office said to eat more salt for my hypotension. Boy that was a mistake! I gained 10lbs in three days and was having trouble breathing. Thank God I had an appointment with my doctor that day!

                    Anyway, the reason for the port is because my veins are shot. It took them 8 times to get an IV started. Since they were having these dificulties I ended up getting lasix directly into the palm side of my wrist. The Dr. almost got it. I had never experienced a pain like that! So after that ordeal the cardiologist said he did not want the chance of not getting IV access so I am due Friday to get the port.

                    Of course Disney expects me to be back to work the next day! Actually, they asked me if I felt like it to come in that night and work! They also decided to train me for the opening team at Mission Space so that is adding on more stress! Like I said been a LONG week!

                    Mary S.

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                    • #11
                      Re: Wish me luck!

                      Mary, good luck on Friday. Just take it one day at a time. We're here if you need us.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Re: Wish me luck!

                        Mary, good luck on Friday! I hope you can say no to some of the things at work. I know it is hard to say no, but sometimes we have to do what is best for us. Please take care of yourself.
                        Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

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                        • #13
                          Re: Wish me luck!

                          How are you feeling now? Have you gotten the weight off?
                          YOU are working TOO much... 40 hrs a week is pushing it for you and you know it...dont be silly...back off a little!

                          Love,
                          MAMA Bear...AKA 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


                          • #14
                            Re: Wish me luck!

                            Mary, Are you trying to push it past the luck Hope all goes well for you, and things come together real soon. Linda

                            Comment


                            • #15
                              Re: Wish me luck!

                              Well, Lisa you can tell to lay off because he's not listening to me! With this whole mission Space thing there is no end in sight to the overtime!

                              Are there any specifics I should ask at my pre-op tomorrow like pre-medicating? My brain is because of the six day work weeks and this was my one day off with two doctor's appointments and scheduling issues. They had me planned to have my port put in twice. I do wonder sometimes!

                              Thanks for the help and encouragement!

                              Mary S.

                              Comment

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