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Offical Evaluation next 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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  • Offical Evaluation next week

    I'm still kinda stunned at how fast this is happening. Guess I'm just used to progress being agonizingly slow but today was a huge leap.

    I spoke with the transplant doctor at shands University of Florida hospital. He was very frank with me and explained a lot of stuff. He told me he wnated the full workup done on me sooner rather than later. Which means I go in on Monday. Would have been sooner but my appoinment wasn't until today. For some reason he wants tha patients on Monday.

    Unfortunately, he said I had two strikes against me. My Chron's disease and the IVC filter. I did tell him that one of the GI doctors I had seen said I did not have the Chron's disease. So, not only will we be checking the status of my heart but will be doing a full GI work up as well. Just what I want another EGD Colonoscopy in less than six months. He said the biggest thing he was concerned about though was the filter because it makes it hard to do caths. Since it is in the IVC they can only do biopsies from my neck. He said though if this was my only problem that it should not prevent me from becoming a candidate.

    So, wish me luck next week!

    Mary S.

  • #2

    I wish you all the luck in the world!! Have faith...better days are coming
    \"It is not length of life, but depth of life.\"

    Ralph Waldo Emerson


    • #3
      Good luck!!!! We'll all be pulling for you.




      • #4
        Cheering and rooting for you

        I am cheering and rooting for you. After we both get our transplants and the others who are waiting do I am sure we will all be able to write a book. It's an adventure all of us. Some days are tough but we can do it. Take care and my thoughts and prayers are with you.
        Kimberly K. Plaster


        • #5
          Okay, now you're getting somewhere, Mary! Hopefully the forward progress will keep on keeping on! (Is that an expression limited to children of the 60's?) Good luck during the evals. I'm sure you'll be pretty busy with tests for awhile. Try to get as many as you can done right there at Shands to minimize the chance of lost paperwork between doctors/facilities. And the colonscopy would come later, anyway, better to have it over with now.

          Biopsies are normally done on the right side (from the neck) for some reason, even when a left side (femoral artery) cath is being done at the same time, and I have no idea why. When I was at Mayo they did a left-side cath and then a right-side cath immediately following grab a sample for biopsy. The docs at the UCLA transplant clinic do so many right-side biopsies that they have the procedure down to a point where it only takes a few minutes--no sweat.

          When I was 16, in 1971 (that's AD, not BC) they did a left cath through my right arm using a procedure that I'm told isn't even taught anymore! So many things are possible.

          We're pulling for you!

          --Living life on the edge .. of a continent!
          Charter member: Tinman Club


          • #6
            Hang in there Mary. We will be praying for you.


            God Squad co-moderator
            Nothing is as gentle as strength and nothing is as strong as gentleness


            • #7

              I wish you the best of luck.

              I am praying for you and I am pulling for you too.

              Hugs to You,
              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.


              • #8

                I certainly will be thinking of you and praying for the best.

                You're on the right track now.

                Keep us updated when you can.


                • #9
                  Mary, I am so excited for you. The big journey has begun. As far as heart biopsies all of mine except one have been through the neck on the R. Not a problem. As my Dr.'s told me when we are done testing you for this transplant we will know more about you than you ever thought possible. And they did. they knew every child hood disease I had had and hadn't had. The more you have had the better as you have the immunity to them. So good luck, and you are in my prayers.

                  Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                  ICD&Pacemaker 1996
                  Heart transplant March 19, 2004 @ Mayo Rochester
                  Mom of Kaye.


                  • #10
                    Good luck and keep us posted!


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


                    • #11
                      Mary, Thinking of you, praying for you - Linda


                      • #12
                        Wow thanks for all of the heart felt wishes. I truly appreciate them. just when you think you are all alone in this so many step up and remind you that you are not.

                        Boy did all that driving take it out of me. On top of it all I think I might be getting a cold or another pleural effusion. That is what it feels like at least that and my temp is about 100 right now. Not sure who I should call about it. Hopefully though I will be feeling better tomorrow.

                        Thanks again!

                        Mary S.


                        • #13

                          We will be praying that Monday yields great news!



                          • #14
                            Dear Mary
                            Good luck.We are all praying for you.

                            Karen Cicconetti
                            Heart Transplant 1998
                            Don\'t take your organs to heaven
                            Heaven knows we need them here


                            • #15
                              Best of luck Mary!!!!
                              mom to Andrew(HCM) 21 years old
                              Diagnosed \'95 age 5
                              Myectomy \'96 age 6
                              ICD implant \'99 age 9
                              First ICD shock (X2) \'04
                              ICD replacement surgery \'05 age 15

                              *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)