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Having Myectomy Done At Cleveland....Very Nervous


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  • Having Myectomy Done At Cleveland....Very Nervous

    I'm 28 yrs old and having a myectomy done sometime before Easter. This is all very surreal to me....I was diagnosed in Dec and just got back from the Clinic last week. Had my initial tests and a consult with Dr.Lever and hopefully will know the date of the surgery on Monday!! I'm still in shock and could use a lot of advice AND info on what the heck is about to happen!!! I've been taking a look at some of the postings and it's definitely making it more and more real for me. I'm just a very impatient person and I hate the unknown...help, please!!?? Steph
    Had myectomy on March 1 2005 and was implanted w/an ICD on April 28 2005....please refer to me now as the Bionic Woman

  • #2
    Steph, You're in good hands and that's very reassuring. Give yourself time to get used to it. You will have plenty of responses and lots of support. I hope you will be able to have consistent family support thru the surgery and recovery. Keep us posted on how things are going and the time frame. Best wishes, Linda


    • #3

      I had my Myectomy at Cleveland about 5 month ago.
      Piece of cake. You'll be fine.

      I sent you a Private Message.

      Stuart Schwartz
      Cleveland Myectomy Club
      August 31, 2004


      • #4
        Hi there. We have several members here who have had ablations at Cleveland. They're top doctors there and you will be in a very good place. I'm sure others will post their experiences soon.


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


        • #5
          Hi Steph,

          There are a bunch of us here who have had myectomies at the Cleveland Clinic, and every one of us will be happy to help you in any way possible. We're a pretty tight-knit group and love to help others through the myectomy process just as there were people to help us through our own. I can tell you that you are in great hands there, and please try not to worry, and it's a walk in the park, blah, blah, blah... which is all true of course... but then again that's easy for me to say because i've already been through it! You are understandably nervous, and at the age of 28 the prospect of any surgery at all is pretty scary, much less open-heart surgery. Hang around here with us and we'll get you prepared as best we can.

          If you've done a search through the myectomy forum then you have undoubtedly found some very specific posts concerning what to expect in Cleveland before and after the surgery, as well as during your recovery period at home. As your surgery date draws closer, you will probably have additional questions and/or concerns specific to your own situation, so please post often so we can try and address these for you. You may also PM or email any one of us if you would like to chat or speak on the phone prior to your surgery, but i like to keep as much of this on the board as possible so that others can learn from your experience.

          The first issue to deal with will be where to stay and who will be accompanying you. Since you have been to the clinic you may have already taken care of this part, but i'll reiterate it anyway.

          You'll be asked to be in Cleveland 2 or 3 days prior to your surgery for various tests, etc. and the hospital stay following the surgery is normally 5 days... so you're looking at about 8 days total. It would be very helpful if someone can be there with you for the entire process, as you'll find there's quite a bit of waiting involved during the preliminary tests, and it helps to have someone there to keep you calm and cool through all of this. During your surgery and in the days following, there are classes and instructional videos for your family or friends to attend every day so they can assist you in your recovery and help you know what to expect.

          There are three hotels adjacent to the campus, and of these the Cleveland Clinic Guesthouse is the most affordable at 100 bucks a night or so. Be sure to tell them you're a patient to get the discounted rate, and if someone will be staying with you for the duration, you can get the further discounted weekly rate as well. I highly recommend the Guesthouse for the hassle-free factor alone, since you won't have to deal with driving around Cleveland and paying for parking every day at the clinic which can get expensive. The rooms are nice, there's a shuttle to take you anywhere you need to go on campus, free internet access downstairs, refrigerators in the rooms, and if you ask in advance they can put a microwave in there for you also.

          I'll quit rambling for now, but once you get your surgery date confirmed please post back and we'll address any additional concerns and questions you might have about the myectomy itself.

          Take care,

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


          • #6

            Jim covered it pretty good for now. Give us a little more info and we can respond a little better.

            My myectomy was in May of 04. I'm getting ready to go back to Cleveland for my one year check-up. I'm 50, so at your age you should have an even easier time than I did.

            Who ever goes with you tell them to be sure and hit the cheesecake at the Chicago Deli. It's killer...

            " Real Courage Is Being Scared To Death But Saddling-Up Anyway "


            • #7
              Steph -
              You have come to the right place to get ready for your procedure. You are in great hands at Cleveland and this should bring you comfort.

              If I can do anything to help just call!

              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)


              • #8
                Hi Everyone, I'm Steph's mom, Sally. We.ve had trouble posting and then a real set-back. If this posts I'll explain where we are!
                Had myectomy on March 1 2005 and was implanted w/an ICD on April 28 2005....please refer to me now as the Bionic Woman


                • #9

                  Steph had her cath. test done on Friday. She has small arteries so they couldn't plug it. They used a platelet seal and then, with pressure, moved her from the table to a bed. When they moved her, the seal broke (at least that's what they think happened). She bled into her abdomen. Lost quite a bit of blood. Was in the ICU under Dr. Lever and Dr. Grasso until Sat. night (when they finally had a bed in the cardiac step-down unit). She will be there until her surgery. Dr. Grasso wanted to discharge her and postpone the surgery for a week or two, but Dr. Lever wants to keep an eye on her and possibly do the surgery tomorrow, if Dr. Smedira can do it. She has really had a time of it and now is even MORE nervous about the surgery. If you could give her some encouragement and prayers, it would help. We'll keep you posted as to how things progress. By the way, her ARTERIES are fine!
                  Had myectomy on March 1 2005 and was implanted w/an ICD on April 28 2005....please refer to me now as the Bionic Woman


                  • #10
                    Sally, Please give our best to Steph. Let her know she is in our thoughts and prayers. Thank you for keeping us up to date. I hope you have someone to be with you and help you thru this whole thing also. Best wishes, we will be waiting for updates, Linda


                    • #11
                      Sending prayers of strength and peace for Steph and good thoughts of everything going smoothly from here on out for her!!

                      Steph - I am a myectomy veteran under Drs. Lever & Smedira in 2002 when I was at the age of 31. I also had a complication following my heart cath and required an overnight stay following my cath although mine was not in ICU but rather just in the 23 hour unit. It is scary and unnerving to have a complication on the eve of a myectomy so I can relate to your increased sense of nervousness. Please know that you are safe and in the best possible care at CCF and under the watchful and knowledgable eyes of fantastic doctors.

                      You will do wonderfully through everything! Please keep us posted on progress and feel free to PM if you would like!
                      Lynn Stewart
                      HOCM 4/2002
                      Cleveland Myectomy Crew 8/2002


                      • #12
                        Steph(and Sally),

                        Sorry to hear of your troubles right now.
                        I hope you can get the care you need and get back on your feet as soon as possible. We are all here cheering you on, and hope to hear from you soon. Take care and keep us posted.

                        It's not what you gather, but what you scatter that tells what kind of life you have lived.

                        Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


                        • #13
                          Steph (and Mom),

                          Please try not to be discouraged as you really are in the best of hands there despite your recent setback. I also had a slight complication during my cath, and two days later on the eve of my myectomy i jumped in the shower only to find that the entire lower half of my body (yes... even there) was dark purple. Yikes! I had been hurting like heck ever since the cath and i could hardly walk (which ain't supposed to happen), and now apparently i was turning colors as well!

                          Needless to say i trodded on off to the ER and spent the rest of the night there. They released me just one hour prior to my 5:30 am arrival time for the myectomy, and i was so tired and cranky i was about ready to call the whole thing off at that point! But i'm very glad i didn't and the results have been great. Yours will be too.

                          These things happen to all of us, but your main objective for being there is to get that myectomy and i know you will do great.

                          Mom... please keep us posted regularly as we will all be very anxious to hear how everything goes!

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


                          • #14
                            I'm really sorry to hear about the setbacks. I hope that everything goes well and she is able to sail through the surgery.


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


                            • #15
                              Hi Sally
                              I'm sorry to hear about Steph's set back. This does happen in some cases. The best thing is to remember that Steph will be feeling great after she re-coops from surgery. Steph is probably thinking "enough is enough, let me out of here", but that would be the worse thing she could do.
                              I was 20 yrs old when I had my first myectomy. I had it performed at the National Institutes of Health in Bethesda, Maryland. I was scared to death. My mom and husband went with me. It was so weird because they had locks on the outside of my bedroom door. My mom said, "We haven't sighned the permission yet, if you want to change your mind now is the time".

                              I remember the doctor that was going to do the surgery telling me if I didn't have the surgery, I probably wouldn't live to see my 21st b-day. I had a little girl (she was 3 at the time) and I knew I wanted to be around to watch her grow.

                              My mom and I talked again and again before surgery. Talking to her lifted some of the weight off of my shoulders. I knew that when I woke up after surgery, she would be there for me along with my husband. My mother was a gem.

                              That was 32 years ago. My mom has passed away but I still remember the support and encouragement she gave me.

                              I know it will be hard for you, but just by you posting here shows me that you are concerned and strong.

                              Please keep in touch and let us know how Steph is doing.

                              Prayers for both you and Steph.


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