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Leaving tues. for Mayo!

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Dave618 Find out more about Dave618
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  • Leaving tues. for Mayo!

    Hi everyone,
    The time is near! I fly out to mayo Rochester this coming Tuesday (8/28/12), testing is scheduled for the 29th, consultation for the 30th, and surgery with dr. Schaff for the 31st.

    Anxious, excited, scared, nervous...yeah, I think that covers my emotions, lol....
    Since my diagnosis on march 31st, it's already been a loooong journey to get to this point, and already been through major testing at UCLA...

    Did ALOT of homework in my journey, which not only found me here, to be a part of the HCMA community, but to also get me to the Mayo clinic for the surgery/myectomy!!!!

    I'd like to thank Marc (mbcube), cynaburst, and Lisa & Kelly for your extra efforts in my journey!
    Wish me luck, and love to you all...

    For archive purposes, whomever may read this for years to come, here is the bottom line for my advice in what I've learned with HOCM...
    Go to a center of excellence (as in the Mayo Clinic), and call the office here @ the HCMA center, and talk to Lisa! She, and all the moderators here will guide you in the RIGHT direction!
    Last edited by Dave618; 08-27-2012, 02:14 AM. Reason: To add the word myectomy

  • #2
    Re: Leaving tues. for Mayo!

    Good luck Dave. This year so far must have been a whirlwind for you.

    Comment


    • #3
      Re: Leaving tues. for Mayo!

      Dave - Wishing you all the best. I hope that you feel much better at the end of your journey. That is why we are here and we were happy to have helped.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

      Comment


      • #4
        Re: Leaving tues. for Mayo!

        Dave,
        Here's hoping for a smooth ride; you're in great hands.

        Gordon
        Myectomy on Feb. 5, 2007.

        Comment


        • #5
          Re: Leaving tues. for Mayo!

          Dave - wishing you the best - Linda

          Comment


          • #6
            Re: Leaving tues. for Mayo!

            Thank you all for the replies! It means so much during this difficult time...
            As soon as I'm able, I'll post here to let you all know how I'm doing!
            Thanks for the wishes, and for all the support, it really has helped!
            Love to all~
            Dave

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            • #7
              Re: Leaving tues. for Mayo!

              Dave,

              Sorry I missed this before you hopped on your plane today, but nonetheless I wish you the best on your upcoming surgery and look forward to hearing about how you are doing afterwards. The hardest part is often the waiting, and you're already through that!

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

              Comment


              • #8
                Re: Leaving tues. for Mayo!

                I am sure you have arrived in Rochester. I wish you the best this week you are in an awesome place
                Midge

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

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                • #9
                  Re: Leaving tues. for Mayo!

                  Thank you guys! I am here, meet with doctors tomorrow, had testing today...must say, the clinic is beyond organized, visits are all mapped out, and I can't say enough about how nice and friendly everyone here is, including the locals!! I'd also like to mention how amazingly beautiful St. Mary's chapel is here! I have been documenting the visit with beautiful photographs I'll figure out later how to share! Nothing gorry though, lol....will post more later!

                  Comment


                  • #10
                    Re: Leaving tues. for Mayo!

                    Had surgery on Friday, left to come home on Thursday! Been home since last. Thursday! Had some lung issues, and they've put me on pain meds, so I have to say, I have yet to notice a difference in my symptoms! I can tell my breathing seems different , but basically feel like I did before the operation! Dr. Shaff suggested I wait two weeks before noticing any kind of change...here's hoping!

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                    • #11
                      Re: Leaving tues. for Mayo!

                      Hi Dave,
                      Glad you're home!

                      Sorry you're having to cope with complications, but they do happen, and you'll get through them. I don't think I felt at all better (better than pre-surgery, that is) until I'd been home for around 4 weeks -- partly because I had to cope with some complications. Hopefully you'll start feeling a lot better soon.

                      Gordon
                      Myectomy on Feb. 5, 2007.

                      Comment


                      • #12
                        Re: Leaving tues. for Mayo!

                        Thanks Gordon!
                        I was told te bottom of both my lungs collapsed, but that this happens to 80% of patients, and dr. Shaff was unconcerned by it! This also caused my fluid in the lungs, but he said within 2-4 weeks that would clear up!
                        So the pain med they have me on is the alternate to the oxcoten, as that made me nations. Also for 4 weeks put me back on metropol, which I've never done well on, so I guess for me to see any improvement, I will need to get past this drug phase, and go from there.
                        Honestly, once I've heeled, the outcome is the only choice I have left to live with now...
                        Dr. Schaff did say he thought in 2 weeks I'd feel like a new man, like I did twenty years ago!
                        I sure hope so...

                        Comment


                        • #13
                          Re: Leaving tues. for Mayo!

                          Dave,
                          Please try to set reasonable expectations for yourself during these first few weeks at home. I fell into the trap of assuming I was going to feel better immediately and was very disappointed that I didn't. I, too, had lungs filling with fluid and other complications that slowed down the recovery process a little bit. I not only did not feel better immediately after surgery, I felt worse. In fact I really wondered whether it had been worth all the pain and aggravation. It is now 4 months post surgery and I can tell you that it HAS been worth it. It just took day after day of small improvements to finally make me realize that I am definitely better off than I was before. So hang in there and celebrate the small victories. It has been said many times on this forum, this surgery is not a cure for HCM, but it should make you eventually feel much, much better. Good luck.

                          Diane
                          Myectomy May 2012
                          CCF

                          Comment


                          • #14
                            Re: Leaving tues. for Mayo!

                            Great post, Diane!

                            Dave, glad to hear that you are home and recuperating. I feel it's important to not try and put a time-frame on symptom resolution because it is different for everybody. I saw some initial improvements right after my surgery but to be honest I didn't see my greatest improvements until several years after my myectomy. That's not to say that it will take that long for you, because basically I'm an odd duck any way you slice it, but the whole heart-remodeling thing happens in it's own time.

                            I will never regret having my myectomy because today, and most days in fact, I feel like I don't even have HCM any longer. It's best to look at the bigger picture and not for any immediate signs of relief.

                            My best to you!

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

                            Comment


                            • #15
                              Re: Leaving tues. for Mayo!

                              Thank you guys, I really appreciate that!
                              I can tell you, since this last post, I have felt a lot of improvement, and notice now when I wake up, my heart is at rest....it's amazing to feel that again! Seems like the only time I notice any racing, is after I've eaten, does anyone else still have that after their myectomy? Hoping in time that goes away....and do try to remind myself, so far it's only been 2.5 weeks....so I do understand its still very early...but know its aural to question, doubt, and feel all the emotions you go through after this experience!! Thanks again guys for the wishes, and indulging in some conversation about what to expect now....

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