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St. Patrick's (3/17) Myectomy (wish me luck)

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franklins Father had "IHSS"; I was diagnosed in 2005. Find out more about franklins
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  • St. Patrick's (3/17) Myectomy (wish me luck)

    OK, so I think I've made a decision.

    I'm scheduled for a myectomy at Stanford Hospital on March 17. On that day, I'm supposed to have Dr. Mallidi, the relatively new Stanford Center of Excellence heart surgeon and designated myectomy specialist, shave out my septum.

    By all indications (Echo, MRI) I have a "classic" obstruction, and therefore need a classic myectomy. Dr. Mallidi came from the Toronto group that has done 1000+ myectomies with no mortalities, so that seems like a good group to be from. You can download the writeup that documents these myectomy outcomes from the HCMA.

    I also have the good luck to live a mile from Stanford. It's nice to have HCM and be so close to a Center of Excellence. Ideally, I only have to travel a short ride there and back, not a day's ordeal through airports. And be near my usual doctors, familiar with my case, and with the support of family and friends all right here.

    It was a tough decision - I can't imagine actually volunteering for having my chest chopped open, so I try not to think about it and instead think about how I might be able ride my bike with my 10 year old son again. And by that measure, once I heard that my situation could be most likely improved, and read some of the stories here on the HCMA board, I say "Let's get on with it" - I'm not sure I could keep on going as things have been lately. I've seen my capabilities diminish quite a bit just in the past 4 months or so, and tweaking medications hasn't helped.

    Yet, I'm still on the fence, and have a backup plan to get on the schedule for Dr. Smidera at the Cleveland Clinic (CCF) if I have to. (My cardiologist is content to refer me either direction)

    Why the fence sitting?

    Well, there is the appeal of going to an expert, the best, the Mozart of myectomies. Why not the best? Don't I deserve it? ... and then we consider the awkwardness of traveling across the country, and the extra inconvenience for my family, my wife's time away from work, and of course the extra expense. Since my case is classic, I don't need a maestro. It's really a questionable value.

    But this may tip the scales -

    Stanford Hospital nurses just voted to authorize a strike. If they call a strike tomorrow (3/7), in 10 days, they walk out, right in the middle of my hospital stay.

    Aside from the generic question about crossing a picket line, the Stanford nurses were on strike when we had our son 10 years ago. I had to stay with my wife just about 24 hours a day since the substitute nurses just didn't know where things were, didn't respond to call buttons, and generally had this "who cares, I'll be outta here" kind of attitude. And this was just for a routine C-section, not a cardiac ICU. We swore we'd never go into a hospital on strike again - and now, 10 years later, the 10 year contract is expired, and I need heart surgery...

    So, I guess this is the start of my myectomy journey. It may be a striking story no matter how you look at it.

    I've seen a lot of people post their pre-op and post-op diaries here, so if you don't mind I'll do the same - I think it's good for me to have a place to get my thoughts and feelings out, and I greatly appreciate the feedback you have to give me.

    At the moment, I just try not to get too scared, and keep my eyes on all the things I may be able to do again once it's all over. Biking with my son. Hiking in Yosemite. Maybe that climb to Machu Picchu we have yet to do.

    Wish me luck.

    Frank S.
    Father had "IHSS"
    "Exercise induced asthma" since age 40
    Diagnosed with HCM age 44 (2004)
    Myectomy and L Ant Artery unbridging Stanford Dr. Mallidi 3/17/2011

  • #2
    Re: St. Patrick's (3/17) Myectomy (wish me luck)

    One more thing...

    My wife was told that we ought to get a recliner chair for my post-surgery recovery, so we made a trek to La-Z boy and another furniture showroom nearby.

    We weren't impressed, and were not sure how valuable an automatic "lift" chair might be for the few weeks while recovering from surgery.

    We're not ones to normally hang in recliner chairs anyway (or we'd have one already), and the $1-2K they want seems outrageous.

    But I can see how a soft, adjustable chair instead of a lying down in bed could be more comfy, and that reaching for a lever on the side of the chair could be extra awkward when your breastbone is healing.

    Anyone on the far side of heart surgery able to chime on on the chair question?

    Frank S.
    Father had "IHSS"
    "Exercise induced asthma" since age 40
    Diagnosed with HCM age 44 (2004)
    Myectomy and L Ant Artery unbridging Stanford Dr. Mallidi 3/17/2011

    Comment


    • #3
      Re: St. Patrick's (3/17) Myectomy (wish me luck)

      Hi Frank,
      I did fine without a recliner, but there are others on this board who say they couldn't have slept at all without one. I bought a large wedge pillow, and that + ordinary pillows were enough to allow me to sleep in my own bed.

      As for Stanford/Cleveland, I understand your dilemma -- and would understand either choice.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: St. Patrick's (3/17) Myectomy (wish me luck)

        Frank,

        Good luck! As Gordon said I also did fine without a recliner. As for the decision to have a myectomy, it changed my life in ways I never could have imagined. All for the better.

        You'll be in our thoughts.
        Steve

        Diagnosed HCM & Bicuspid Aortic Valve 2006
        Diagnosed HOCM 2008
        Myectomy @ Mayo 2008
        "It is what it is!"

        Comment


        • #5
          Re: St. Patrick's (3/17) Myectomy (wish me luck)

          Frank I just had a myectomy done in June, 2010 and I can tell you that I feel so much better now. I can do many things with no problems. I am not cured of my HCM but the obstruction is gone and so is the S.O.B and the angina.

          After my operation I used an old Lazy Boy recliner we always had around the house. It was in an extra room we used for me to stay during the day and watch TV and shower in. I really liked the recliner. I could put my feet up and keep myself pretty comfortable. At night I went upstairs and slept in our bed with pillows to prop me up. At times, though, I had difficulty sleeping so I would go downstairs and get into my Lazy Boy, turn the TV on, throw a blanket over me and watch some good movies. Often I would fall asleep in the chair. It was especially helpful the first couple of weeks or so.

          Frank it is funny you should mention Machu Picchu. Before I had my myectomy I had ruled out ever going up there, but now it might be a possibility. Of course, I would need some extra time to acclimate.

          Good luck on your myectomy!

          John
          Diagnosed HCM 1998
          Myectomy June 2010
          50 mg Toprol XL

          Comment


          • #6
            Re: St. Patrick's (3/17) Myectomy (wish me luck)

            M-Day minus 10
            (Mon 3/7)

            Downloaded the myectomy checklist. Great advice!

            Spent part of the day exploring recliners and medical equipment stores around Silicon Valley. Macy's has fine recliners, but nothing available before mid-April.
            Other places seem to rent them, but they look kind of tasteless.

            Weird thinking of myself being in the market for some of this stuff.

            My heart seems surprisingly well behaved in this time - perhaps it knows the game is up and drastic action will be taken, so it's on its best behavior.

            I read a lot about post-myectomy a-fib. I'm not sure I've experienced that, anyone have a better description so I can recognize it?

            Thanks for the comments.
            gfox42: Always appreciate your myectomy comments. Glad you could get by without a recliner; it seems like a big expense for not much use.

            steve75: Hoping my life changes for the best too. Hearing your comments really helps know there can be life on the other side of this.

            kirbyj: I appreciate the Lazy boy comments, but you already had this around the house. I guess we'll see you in Peru. Now I feel like I'm at 14,000 feet all the time, with no hope of acclimating. My son did a project on Incas this year, and thinks Incas are really cool. In the past, when he's gotten interested in a something, we bend our vacation plans to include them, and Macchu Picchu is on my wife's life list. Maybe that will be the big test of whether this makes a real difference.

            Thanks again,

            Frank S.
            Father had "IHSS"
            "Exercise induced asthma" since age 40
            Diagnosed with HCM age 44 (2004)
            Myectomy and L Ant Artery unbridging Stanford Dr. Mallidi 3/17/2011

            Comment


            • #7
              Re: St. Patrick's (3/17) Myectomy (wish me luck)

              Frank, I am so glad you made a decision and it sounds like the right one for you! It is a hard decision to make but I keep reminding myself that after my 1st surgery the worse part for me was the first 3 weeks after that it was way easier and I could sleep pretty comfortably. So 3 weeks is a small trade off for the benefits you'll get from the surgery (at least this is what I tell myself as I prepare for operation #2). Also, thanks for your response to one of my questions.

              As for the recliner I had an old one with a horrible lever on it so it was pretty useless unless I got someone to pull it for me. It was more comfortable to sleep in the first couple of nights home though. Maybe you could borrow one from someone. That is what I did as I didn't have one either. I have since inherited my moms fancy recliner and now all I will have to do is press a little button and everything adjusts like magic!

              Best of luck with your surgery and let us know how it goes! Jeanne

              Comment


              • #8
                Re: St. Patrick's (3/17) Myectomy (wish me luck)

                I did buy a recliner in advance of my myectomy and honestly, while I still like sitting on it, I found that it was more comfortable for me to sleep on my couch propped up on pillows. When we were still in the hotel in Rochester, I didn't have a recliner, and I slept on the sofa there also, propped on pillows. So, I say that if you have a comfy couch, skip the recliner. It is not necessary.

                I agree with your assessment of the Stanford nurses strike, however. I have had surgeries in hospitals where there was no strike, but they had to supplement their nursing staff with travelling temp nurses. They were basically useless and it made the experience awful. At Mayo the nurses were wonderful. On the other hand, if they cancel the strike, it should be fine. I agree it would be easier to just drive across town for surgery and skip the traveling headache.

                I also read in the L.A. Times yesterday that Northern Cal has the most expensive hospitals in the state. Maybe Cleveland will be more cost efficient. I know that Mayo was much cheaper than here in So. Cal.
                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


                • #9
                  Re: St. Patrick's (3/17) Myectomy (wish me luck)

                  Frank,
                  Best of luck. I would always use caution when it comes to a possible strike.
                  I was very spoiled at the Mayo clinic, where the ratio was 1 nurse for 2 patients, so we were well taken care of.
                  I just got out of a local hospital where I had on nurse for at least 3 rooms.

                  I had debated a recliner, but I don' spend as much time downstairs as I do in bed.
                  You can go to rental places where you might find one there.
                  Diagnosed with HOCM 11/03
                  A-Fib 4/09
                  Ramipril 2.5mg
                  Baby Aspirin

                  Myectomy 1/3/11 - Mayo Clinic - Dr. Schaff
                  Maze Procedure 1/3/11 - Mayo Clinic - Dr. Schaff


                  Mom to two crazy dogs

                  Comment


                  • #10
                    Re: St. Patrick's (3/17) Myectomy (wish me luck)

                    Best wishes!

                    Linda

                    Comment


                    • #11
                      Re: St. Patrick's (3/17) Myectomy (wish me luck)

                      We had recliners, but were getting new ones around that time. But I slept with several (as in 5 or 6) pillows in my bed and on my couch a lot more than the recliner. The lever can be a little troublesome, but not bad. The pain for me was in the rising and laying back mostly. My sleep was random anyway. The lift chair is definitely not needed for most. At the hospital they will set you in a chair for a while daily and it isn't an automatic lift chair. The pain doesn't last forever and that is what the pain medication is for....lol.

                      I am wishing a speedy recovery and sending you my best wishes and prayers!
                      Shelly
                      *****
                      Choose to laugh instead of cry...it's prettier!
                      Remember...
                      You always have the option to change.

                      Diagnosed 1994 with no family history
                      AICD 10/06
                      Mayo Clinic Myectomy 11/07 Joe Dearani

                      Comment


                      • #12
                        Re: St. Patrick's (3/17) Myectomy (wish me luck)

                        Frank,
                        Best of luck and good wishes, your approach to a possible strike is a good one don't even think about letting you health get caught in the middle of it.I did fine with a wedge of pillows, the difficulty was in moving up and to the sides.The hospital here provided a cute heart shaped pillow to clutch to your chest and it worked pretty good (they make a good momento of sigs. by the surgical team), personally I would skip the recliner. As you can see I went through two of them but they don't reflect an opinion of failure (maybe the second one was unnessary) by me. They got rid of my obstruction,but I'm a rare case of something 'else', so don't let my tag line scare you off.The benifit of a myectomy is testified by many here on the board, and most have been returned to full lives. The experiance of the operation and the post recovery was a lot easier than I ever imagined or expected it to be, and the care of the nursing staff was essential in making it so,if it looks like a strike will happen go to plan b or put it off til after it (the strike)is over. Just my opinion.
                        John F.
                        had HCM since birth
                        'enlarged heart' identified in 96'
                        HOCM dx in 7/08
                        Myectomy 8/09
                        extended Myectomy 5/10
                        'End stage' HCM dx 8/10
                        CRT-D implanted 9/10
                        evaluated for Transplant 11/10
                        Listed for transplant 6/11

                        Comment


                        • #13
                          Re: St. Patrick's (3/17) Myectomy (wish me luck)

                          The luck o' the Irish be with you! You've gotten great advice so far, nothing to add here.
                          "Some days you're the dog... some days you're the hydrant."

                          Comment


                          • #14
                            Re: St. Patrick's (3/17) Myectomy (wish me luck)

                            Frank,

                            Yes you are fortunate to have Stanford at your doorstep. I hope the nursing contract is settled quickly so that you can put your mind to rest. Since the myectomy can be scheduled at your convience, maybe consider waiting until the outcome of the nurses contract.
                            You will be amazed how quickly most of us heal after surgery. The first week just stinks. (no way of sugar coating it ). The second week you should be home and you will be shocked how well you are recovering. I did not in the least bit need a recliner. I was able to get up from the couch without any problem. After a few days you realize that you are not as fragile as you think.
                            I did use a large wedge along with a bunch of pillows in bed. I found it helpful to have two pillows on either side of hips to rest my arms on when I slept. It took the pressure off my shoulders and chest. Within another week I was sleeping on my side and by week four I was sleeping on my stomach.

                            Keep us posted, we are here for you.
                            Dx with HCM November 2009
                            Myectomy and Mitral Valve Repair @Tuft's March 2010

                            Comment


                            • #15
                              Re: St. Patrick's (3/17) Myectomy (wish me luck)

                              Some of the things I did before surgery -
                              Got a real close haircut. I knew I was not going be driving for a while.

                              Hire a maid service - Really? heck yeah! there is nothing better then to come back from your long walk to a clean house!

                              Buy items in smaller sizes - You can't lift a gallon of milk for a while

                              Invest in quality sweats. You'll be wearing them out! Its not easy to get dressed those first few weeks so elastic & zippers were my friends.

                              Stock up on DVD's, increase your netflix susbscription. investigate library & book mobiles! You'll find you can do an entire years series in a week. I talked like a Soprano for two weeks - Fogetaboutit!

                              Regardless of location - You'll do fine. Keep up the postings!
                              Marc
                              Diagnosed @ 48
                              Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                              Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                              AICD - Valentines Day '08, Spark Plug replaced 11/14
                              After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                              Quietly going insane . . .

                              Comment

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