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More Myectomy Recovery ?'s

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  • More Myectomy Recovery ?'s

    Once upon a time, a doctor said you needed surgery and you just went into the hospital and had it.
    In modern life, you have to juggle family needs with work needs, and the doctor’s schedule, and airlines, hotels, etc.
    In my earlier post, I mentioned wanting to have the myectomy with enough time so that I would recover by the time a long planned vacation for my wife’s birthday. But life has gotten even more complicated, so I need to ask some more questions about the surgery and the recovery.

    1) Realistically, how long is the hospital stay?
    I ‘ve been told as little as 5 days, and as much as 10.
    2) How long is my wife, absolutely needed to be with me, and how much of that hospital stay can I do on my own?
    For those who don’t read between the lines, this is a child care question. We may have issues with having access to good solid care givers. If she only really needs to be there for the day of the surgery and then 1-2 days after, and then return when I leave the hospital, that would really help out.
    3) On a scale of 1-10 with 10 being horrible, how uncomfortable is the flight home? What if I needed to change planes, would that be major league awful?
    4) I have been known to be a sarcastic SOB. How much worse will I be post surgery?

    Thanks for your indulgence to my neediness.
    Fx

  • #2
    Re: More Myectomy Recovery ?'s

    Felix, I truly don't have the answers. I just want to say that I hope you can get the details worked out and get satisfactory care for your kids. Wish I could tell you more, but I'm sure someone will help soon.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: More Myectomy Recovery ?'s

      You are looking at a 5-7 day stay. If your wife CAN NOT stay the entire time you may want to think about her being there for the first 2-3 days.
      If you have a friend or family member stand in and fly home with you that would be best, I would not recommend traveling alone.

      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


      • #4
        Re: More Myectomy Recovery ?'s

        use the search function to find more myectomy stories -they are in here, you just have to look.

        good luck

        s

        Comment


        • #5
          Re: More Myectomy Recovery ?'s

          I know that both felix and myself (his wife) have done searching and there
          are bits and pieces, but not all the information we are looking for.
          When he had the sleep apnea surgery, people who previously
          had the uppp had posted what it was like and recooperation etc. I have
          already talked to felix about us doing a diary of his experience, so
          that others can benefit.

          WE are trying to figure out a lot of things. thanks lisa for the info
          about me staying for just 2-3 days. (barring complications). We are
          still curious as to how to handle the flight back home and what needs
          to be done. Also how much could he tolerate a 1 1/2 hour car ride, if
          were where to use Mayo (no direct flight to rochester from here)
          ,or even once back in Atlanta a 45 min car ride, after a 3 hour plane ride! Would he be more comfortable in the back seat. what do we do about seat belts?
          I guess at the airport we arrange for a wheelchair on both ends of
          the trip. I really wish we did not have to travel for this, but Atlanta,
          with Emory and St Joes, two prominant heart hospitals, has no
          real experience with myectomys. I guess if you have regular heart
          disease though, this is the place to be


          sandy (felix's wife)
          Fx

          Comment


          • #6
            Re: More Myectomy Recovery ?'s

            Sandy, I'm sure that someone with personal experience with this will post soon. My husband hasn't had a myectomy so I can't say what to expect. Good luck.

            Reenie
            Reenie

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

            Comment


            • #7
              Re: More Myectomy Recovery ?'s

              Hi Felix and Sandy,

              I had my myectomy at Cleveland Clinic in August 2002 and the clinic is about 4.5 hours from my home. When driving home we needed to stop every hour for me to get out and walk 10 minutes - this was instructed to me as part of my release from the hospital. It extended our drive home but of course made the difference on keeping the blood moving and encouraging the 'kinks' from surgery to work out.

              As for what to do about the seat belt, a suggestion was given to me by a fellow-HCMA member to ue a small pillow. Sometimes the hospital will give you a 'splint' pillow after surgery or you might use a small thin one you bring or even a folded towel. Putting this between me and the belt over my chest took care of the belt rubbing or putting pressure on the incision site. Hope that is a viable suggestion for you.

              While I did not have the exact set of logistics that you are potentially facing I can relate somewhat and do think that if you can have a 'stand in' available once Sandy leaves it would be best. Often it's nice to have someone else around to help you think of questions and listen with you to the answers. Also, with traveling you can't bet that you're not going to have a moment when you just don't feel terrific; all the way around it was my experience that it is nice to have someone with you who understands the situation fully and can be an advocate for you.

              Let me know if I can answer any other specific questions!
              All the best,
              L
              Lynn Stewart
              HOCM 4/2002
              Cleveland Myectomy Crew 8/2002

              Comment


              • #8
                Re: More Myectomy Recovery ?'s

                Just a thought... We have some HCMA members that live in the Boston area...someone may volunteer to help you to the airport?
                Just a thought??
                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


                • #9
                  Re: More Myectomy Recovery ?'s

                  I was in the hospital for 3 days after my myectomy. I rode home in a van. (2 hours) I remember being sore but it wasn't unbearable. I'm sure the long car ride would be more difficult than a plane ride.

                  I didn't think it was all that bad. After about a week, I was feeling much better. I didn't have the scoped procedure either, they cracked me open.

                  Comment


                  • #10
                    Re: More Myectomy Recovery ?'s

                    Felix and Sandy, I hope things come together soon for your plans with child care. It's a tough juggling act. Felix, you really don't know how you will feel, so it's best if you can plan for the difficult and hope for the best. I would not like to see you traveling alone. When you make your airline reservations, just tell them you need wheelchair assistance. Use it whether you think you need it or not. You don't know when you may feel a sudden exhaustion. You won't have to worry about connections or finding your way around a strange airport either. It's nice to have someone with you to listen to the instructions and help you get answers to questions you may not have the energy to ask or remember in the early days after such a major surgery. Maybe someone can be with you and Sandy can be with the little ones after a few days. As for riding in a car, the back seat doesn't present the problem of airbags so is safer till you heal more. The pillow will take pressure from the seatbelt. You will get instructions from the nurses before you are discharged, but travel tips are some things you can plan ahead for. Take loose, comfortable clothing and shoes. You've heard good info from many already, and most have made remarkably quick recoveries. I've been impressed. Our son was 16 and recovery was not quite so speedy and uncomplicated. I was glad to have had the assistance in the airport and a few extra days at the Ronald McDonald House before even trying to fly home. I'm not trying to sound pessimistic, but rather to help you consider options and be ready to switch gears as needed. Don't worry if you need an extra day or so before you feel up to traveling and do remember Lynn's advice about the walking. It's important to keep good blood flow in the legs. You've got busy times ahead of you, getting everything ready, esp with the little ones. I wish you the best and a speedy and uncomplicated recovery. We'll be watching for updates. Linda

                    Comment


                    • #11
                      Re: More Myectomy Recovery ?'s

                      Hi,

                      I have been away for awhile recovering from my myectomy. I am a little in the dark as to what is going on here, but after reading Lisa's response I have to say I am so anxious to help out here in Boston. I did not gleen you were having a surgery here from the post. I and friends of mine here would be honored to help with transport or anything anyone needs. I know how much this takes because I did it a few months ago. Please, Please, don't hesitate to contact me so we can help. I needed help, and when I asked it was there for me. I would be grateful to return this favor and help you to make this time easier. I would not hesitate to help, please let me know how I can. You can post, or contact me privately. Best of luck.
                      Doug
                      NEMC's (Boston) First Myectomy 7-22-2003

                      Comment


                      • #12
                        Re: More Myectomy Recovery ?'s

                        Doug, You are one of many who are anxious and willing to help others out. Too often, we're not even aware of what is available to us. People of Rochester were so generous and helpful to us while we were at Mayo. We had a total stranger drive us to the airport on NY's Day when our pre-scheduled cab showed up with someone else in it and told us he couldn't take both my son and I, only one. We had at least 4 people in the waiting room stand up and say they had a car and were ready to take us. We all repay these kindnesses to the next person, can't always return the favor to the original giver. Felix, don't be afraid to ask. You might get a few "no's", but you'll never get a "yes" if you don't ask. Linda

                        Comment


                        • #13
                          Re: More Myectomy Recovery ?'s

                          felix's wife again.. I think we are sticking with boston on feb 18th. I will
                          stay until the 20th at night. we have relatives in boston that can help
                          with felix if needed while he is still in the hospital. I am then flying
                          back up to help him get home. (this way always my intention). friends
                          will take the kids for those days.

                          thanks for all your inputs here.. sounds like recovery is in a big range.
                          I will hopefully find an internet connection while we are up there and
                          will do a diary type update, so that others will hear from our experience.

                          sandy
                          Fx

                          Comment


                          • #14
                            Re: More Myectomy Recovery ?'s

                            What hospital will you folks be at. As Doug said, members are here and helping each other would be a great way to make this list come alive.

                            I was at Mass General, where will you folks be?
                            Alcohol ablation January, 2004. Stent placed, September, 2003. Now...at age 53...working out, building a cabin, sober and clean. A 2nd chance at life. There is hope, there is a future. Have faith.

                            Comment


                            • #15
                              Re: More Myectomy Recovery ?'s

                              hi there,

                              its felix's wife again.. We have made 4 sets of round trip tickets (one for
                              my mom staying with the kids for the first part), and 3 nights hotel for
                              myself (versus staying at relatives, not sure when I will get sleep). this
                              leads to my next set of questions.

                              felix will be having his surgery on the morning of the 18th. realistically
                              when will be the first oppty for me to see him? I do have a friend
                              that lives out in Groton coming in to keep me company for the day.
                              I wonder how good NEMC is about letting you see your spouse ASAP.
                              When felix had his UUUP last year I had to fight to see him in recovery while waiting for a room. I know he will be "out of it" but still...

                              I travel back to atlanta on friday (2 days later) but on sat his brother
                              is coming and staying until I get back. This makes me feel much better.

                              also once released and back in atlanta, Felix will probably stay downstairs in the recliner versus the bed. I would assume this is more comfortable?
                              Will he be up to preparing simple meals if he has any appetite, such
                              as toast, sandwiches, etc; Do I need friends to look in on him while
                              I am at work those first few days he is home?


                              less than 2 weeks until surgery. Its very hard not to be anxious here.

                              sandy
                              Fx

                              Comment

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