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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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  • #16
    Re: St. Patrick's (3/17) Myectomy (wish me luck)

    M-Day minus 9.
    Tues 3/8/2011

    So, another day, another day of details to try to wrap up.
    I ran a conference last year, and still need to deliver my final report. I've been working on the laptop furiously trying to analyze the attendance statistics and the budget details now that the final invoices have come in, and it feels great!

    Hey, using the laptop (3 cheers for the internet!) and sitting driving a car and I feel I don't have a problem at all. Top of the world!

    Then, I take out the garbage - picking up a 20 pound bag of the week's accumulation and taking it to the curb makes everyone gasp for air, doesn't it??? It's heavy, after all...

    I took my wife to look at the recliners I saw the other day, and we're debating. We see one I like for recuperation, but the style doesn't match our stuff and I can't imagine using it after I'm all well. She saw one she liked but it's a bit narrow if I'm going to think about sleeping in it. And I found places that rent lift chairs, one that thinks they can get it covered under our insurance plan as a DME expense (Durable Medical Equipment).

    In the meantime, my wife reminded me we have a Sleep Number bed, and if I turn the number all the way up, the mattress inflates and sort of eventually rolls me off the bed - so I could use that as my own "lift bed" if I wanted to. And it costs nothing - no waiting or delivery charges! Clever thinking!

    I'm very grateful for all your comments about getting by with wedges and pillows - I bought a foam wedge today (weird - prices range from $38 to over $50 for a piece of foam?!? and am encouraged to think about the long term, when I'm "back to normal" and not as an invalid, which (I hope) will only be a month or so.

    Any advice on the "shower chair" I see on the HCMA Myectomy list?
    I saw a bunch of things at the medical store but didn't know one from the other - and I thought sitting in the shower would be tougher than standing... Please fill me in; I do want to be clean and realize I won't be taking a nice hot bath for a while after surgery.

    For those kind folks out there who commented on the strike, let me clarify - the Stanford Nurses contract expired March of 2010 (last year!) and they've been negotiating a new one ever since. The nurses finally had it, and voted 70% in favor of authorizing a strike. But they didn't actually call a strike yet, and they need to give 10 days notice (so guys like me can cancel their surgeries, etc.). They go back to the negotiating table Thursday (my M-7).

    If that fails and they call a strike, it depends on the day but my hospital stay (it's typically 5-7 days, yes?) may be might be over by the time they walk out, meaning I just get in under the wire.

    We looked it up - the past strikes were authorized early but the nurses didn't go on strike until June, after school let out and family vacations could be taken. So, we actually expect hostile on-off negotiations until June this time too. Which means I'm in and out under the regular nursing staff, who know where the painkiller drips are stored etc. etc.

    And, my medical plan employs "hospitalists" at Stanford - MDs who follow up on local patients in the plan to make sure their hospital stays are going OK - that people on liquid diets are getting no solid food, that the doses of medicine are at 1X and not 10X, etc. I'm not sure if it's an indictment of Stanford that the plan felt the need to staff "hospitalists" there, but they're there now - one of those advantages of having a local hospital instead of going across country to have strangers in cold places look at me.

    I hope these "hospitalists" are useful, and can look after me so my wife can get a break - right now she's expecting to do a bunch of that job, and I worry it will wear her out.

    Michael-Medic: I really appreciate your comments on your recovery - it gives me great hope. When you say "the first week just stinks", you mean the first week (mostly in hospital) or the first week once you get home? If it stinks at home, any pointers to keep the stink down? When can i get back to eating good BBQ again?

    mbcube: Thanks for the detailed comments - hard to imaging not lifting a gallon jug, so that kind of information is really helpful to plan. I really appreciate it. Just got a haircut so not sure I need one again, but I'll trim the beard back so I don't have to tend it for a while. I can't think of any TV series I'd like to catch up on, but I'll think harder. How soon in recovery can my attention return to a laptop? Lots on the internet to browse, a time sink extraordinaire...

    Matzbo (John F.): Thanks for your comments; looking at your foot note descriptions, have you considered Ventricular Assist Devices? My scheduled surgeon, Dr. Mallidi, (aside from doing transplants) has as one of his pet passions developing Ventricular Assist Devices, which I understand is a kind of a mechanical "assist" device to help your heart, (but using your own plumbing, so less intrusive than an artificial heart) and without inserting alien tissue as transplantation does (and all the rejection problems that entails).
    Dr. Mallidi says this would be mainly for end stage HCM (which my Dad eventually had), and which I see in your footnotes - have you talked to your Dr about this option? Not sure how widespread it is, but a transplant is pretty drastic.

    That's it for today.

    I greatly appreciate what you all have to say.
    It makes all this much easier to face.

    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


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

      Frank,
      I'm the one that added the shower chair to the list. Again, we are all different, but just getting dresssed and undressed wore me out for the 1st week I was home. I had no/minimal energy to add that to my list of daily activities. Just getting dressed put me down for a 30 minute rest. So, a friend found a shower bench at a garage sale and brought it over. It was a God send. Actually, if you have an old fashioned beach chair with the woven straps, that would work nicely too.

      I have a recliner and NEVER even contemplated sleeping in it, nor the couch. I never contemplated a wedge........I just used pillows to prop me up and it was fine.

      I hope they give you a green hospital gown for St. Paddy's day.
      L
      Onward and Upward !

      Diagnosed 4/07 HCM with fixed & dynamic obstruction
      Myectomy with resected cordonae tendonae 4/08 CCF
      ICD 10/08

      Comment


      • #18
        Re: St. Patrick's (3/17) Myectomy (wish me luck)

        Hi Frank.

        Whichever hospital you choose, my best wishes will be with you. I had my myectomy on August at Cleveland, travelled from New Jersey, and all went well. The anxiety and the planning seem like a far off memory now that it is over and I am doing great. Right now your anxiety levels are through the roof. The only advice I can give is when you finally make the decision you will be relieved. I have to say that the pre-conception of the operation was far worse than the recovery. You will certainly have discomfort but you will recover and quickly. The recliner is not necessary. Pillows, wedges, work fine. As for the A-Fib, I was lucky enough not to experience it. Think positive thoughts. Not everyone gets every symptom. I am sending you some of the extra energy I now have because I can breathe again.

        Maresey

        Comment


        • #19
          Re: St. Patrick's (3/17) Myectomy (wish me luck)

          M-Day minus 8
          Wed. 3/9

          So, another busy day focused on getting this Conference write up done before I go in to the hospital. It's good to be busy to keep my mind off the facts of the surgery, which could drive me batty with angst if I let it. But then again, I spent 1/2 hour trying to account for a 2 cent rounding error in the food & beverage bills. I think I'm losing some perspective, trying to find something to distract my attention.

          I had a weird dream last night that I was being rolled into surgery, but just as I'm going under because they couldn't find any clean blood to use in the heart/lung machine. "But wait", I try to say as the anesthesia begins to take hold, "I have lots of blood! Please, get this over with...." and dimly I heard the nurses say "Not enough blood? That's it! we're out of here!" and they threw off their gowns and marched off to go on strike. And then as I go under I hear the Dr say, "OK, I guess I have to do it myself... how do you run this thing, anyway?" and then I woke up as my dream self went under.

          All day I wondered if I ought to go to the hospital to have some blood drawn so I would have a reservoir of my own to use, which doesn't make too much sense - if they needed me to do that, wouldn't they have mentioned it?

          I looked up used lift chairs on Craig's List, and we sent to see one tonight.
          "We got it for my Dad", he said, "but he had a stroke and died a few weeks after we gave it to him. So it's barely been used". We said Thank You and tried not to shudder as we drove off - we nicknamed it the "Bad Karma" chair. That settles it - no more of this chair nonsense - I couldn't imagine trying to sleep in this thing, and it sounds like the lift function would only be useful for perhaps a week out of hospital. Based on all your kind comments, I expect to be aiming to get back to normal as soon as possible. I'm too young to be an invalid.

          That's it for today. I greatly appreciate all your thoughts and comments.

          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


          • #20
            Re: St. Patrick's (3/17) Myectomy (wish me luck)

            Frank -

            Personally I think the greatest thing you are doing to help yourself over this traumatic time is writing these blogs - it has a way of putting things in perspective while getting all your fears and worries out of the way. Keep it up and before you know it you will be writing how the whole experience was no where near what you expected and that you are right back to where you were before all this started.

            I wish you the very best no matter which hospital you choose.

            Comment


            • #21
              Re: St. Patrick's (3/17) Myectomy (wish me luck)

              BTW welcome and keep blogging .. its all good we gain perspective from each unique journey..

              The blood situation is... MOST do not need transfusion following or during septal myectomy.. So USUALLY no plan needed. You will be typed and cross matched for emergency but following they like to let the body re-build itself following surgery. This is one reason why a diet rich in protein foods is essential to healing and regaining strength following open heart surgery. My myectomy was going on 8 years ago and I remember it was important for me to have strong legs. I used my feet and legs to move my overbed table and to propel me out of bed . I used a wedge at home but doing a semi roll to the side with my arms crossed over my chest was very helpful from getting up from the bed and couch. Time is ticking but work on keeping those legs exercised and practice some of these moves before surgery.

              Best wishes.
              Dx @ 47 with HOCM & HF:11/00
              Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
              Lead failure,replaced 12/06.
              SF lead recall:07,extracted leads and new device 2012
              [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
              Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
              Genetic mutation 4/09, mother(d), brother, son, gene+
              Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

              Comment


              • #22
                Re: St. Patrick's (3/17) Myectomy (wish me luck)

                Hi Frank,
                Most people don't need transfusions. I was one of the rare exceptions; I had a fair bit of internal bleeding after my myectomy and needed some blood. But they had plenty. Besides, taking blood out of you now will only worsen your symptoms -- this is why HCM patients usually are discouraged from being blood donors.

                It sounds as though you're doing well. I know that the run-up to a myectomy is not an easy time!

                Gordon
                Myectomy on Feb. 5, 2007.

                Comment


                • #23
                  Re: St. Patrick's (3/17) Myectomy (wish me luck)

                  M-Day minus 7
                  Thurs 3/10/2011

                  OK, one week away. I'm now finding my path to surgery seeming more and more inevitable. No new news on the possible nurses' strike, which means any walk out is at least 10 days out (their stated rules), well into the end of my stay (if all goes well). And likely later.

                  Although I could be surprised, I think I'm almost reaching the point of no return. I'm on for Stanford and getting it done as scheduled Mar. 17. One week (!) from today.

                  I talked to the Dr's nurse and also the scheduler today; they said that the time to give blood had come and gone over a month ago, and transfusions weren't usually needed anyway. I asked about the logistics about where I am to stay; not surprisingly, the day I go in to have an angiogram first, I'll stay in one place, then off to surgery and after that to the ICU, then out of there to a "step-down" ICU. I guess with all that moving around, I'll have to pack light.

                  What I didn't realize was that my son will not be allowed in at all while I'm in the ICU - nobody under 16 years old. Perhaps for the better, but my wife was expecting to basically sit with me the whole time, with him playing his portable video games nearby, so this means we need to find someone to sit for our son more than we originally expected.

                  Officially, no kids under 12 in the step-down ICU, too, but my 10 year old is tall, and they said "as long as he's well behaved, nobody is going to check his ID..." Still, I'd think he'd have a hard time not seeing Daddy at all for a week while this is going on. I suppose it's all to keep school and day-care germs away from cardiac patients, but still...

                  We've tried to make sure my boy knows what will be happening next week, without emphasizing the negatives too much. How much did you guys tell your kids? How much of the risk should you prepare them for? Actually, I'm not so scared of dying (but that's another story), but missing my son's growing up and graduations would be a great loss. Perhaps the greatest.

                  And I suppose that's the real reason to do this - sometimes I think I'm fighting against "nature", that this is postponing "my time to go", that SCD may be what I was programmed for in my genes and I should accept my fate. Not a bad one, really - better than a long lingering Alzheimer's, isn't it?

                  But I also realize that my family loves me very much and I love them and I don't want it to end, at least not yet, not now, and certainly not next week.
                  So, I take this act of will, with the help of a surgeon, and a will to recover, to sidestep my genes and give us more time, hopefully just enough. Soon enough, the time will come to take the next step to that "undiscovered country", and then perhaps I'll be just a bit more ready, my son that much more ready to carry on in the world ...

                  Enough for tonight. I'm clearly getting overly poetic and philosophical.
                  But perhaps that, too, is for the best.

                  More later,

                  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


                  • #24
                    Re: St. Patrick's (3/17) Myectomy (wish me luck)

                    M-Day minus 6
                    Fri. 3/11

                    A quiet day on this board.

                    Big news out there in the world, with the Japanese Earthquake and tsunamis.
                    I spent quite some time in Japan, and almost directed my career so I'd live there (back before I knew I had this heart issue). But, living in such a built up urban area ultimately knowing another giant Earthquake was coming made for serious anxiety.

                    Speaking of anxiety, I actually feel some relief now. No more strike news, which means this worry is most likely simply off the table. I'm approaching the surgery as something inevitable, like an exam I know is coming, and doing my best to be as prepared as I can be.

                    A quiet day, mostly taking care of minor business, doing a Costco grocery run to load up on things I can't carry after Thursday (my wife says "I hate going in there, so you go get the all the things you get at Costco for the next month or so") Cases of Diet Cokes, jugs of grape juice - will I really be having trouble lifting gallon jugs after surgery? What about 1/2 gallon? I suppose I can rely on you guys to tell me whether to push it or just go easy and let things heal.

                    That's it for today.

                    More shopping tomorrow for supplies on the HCMA checklist.

                    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


                    • #25
                      Re: St. Patrick's (3/17) Myectomy (wish me luck)

                      Yeah.. That sternum will offer its own restrictions post myectomy so it will guide you. Any shift w/ regards to lifting and you will feel it .. remember takes about 3 weeks-4 for bone to bridge / knit over and start to solidify. Remember to stifle a sneeze, should be on the list and a very valuable skill to practice if one comes up before hand.
                      Dx @ 47 with HOCM & HF:11/00
                      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                      Lead failure,replaced 12/06.
                      SF lead recall:07,extracted leads and new device 2012
                      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                      Genetic mutation 4/09, mother(d), brother, son, gene+
                      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                      Comment


                      • #26
                        Re: St. Patrick's (3/17) Myectomy (wish me luck)

                        Regarding your son...I have a 9 year old son who was 4 when I had my surgery. I have always been very matter of fact with him and have explained things to him at an a level appropriate to his level of understanding. It is best to just be as matter of fact as possible and answer all questions to the best of your ability.
                        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


                        • #27
                          Re: St. Patrick's (3/17) Myectomy (wish me luck)

                          M-Day minus 5
                          Sat. 3/12/2011

                          Nothing big to report today. My wife was off on a special project she's doing for most the day, and I got to sleep in until 11 AM(!).
                          Finally, so good to actually get enough sleep!

                          Weird dreams about being in a cliffside hotel when tsunamis hit; my room on the 5th floor only slightly flooded, and I take lots of photos. Others lower down clearly impacted and dismayed, if not washed away. Dreams clearly influenced by the news of the week.

                          Routine family time - we had dinner out, saw a movie ("Unknown"), stuff that may get very tough for a while. Read my son to sleep; he seems to be more clinging to me in these days - I expect he's more nervous too than he lets on (as am I, for that matter).

                          Now to bed, more next week...

                          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


                          • #28
                            Re: St. Patrick's (3/17) Myectomy (wish me luck)

                            Hi Frank,

                            First of all, good luck on the surgery! You mentioned about using your laptop: I found that it took me about two weeks post-surgery to be able to concentrate and focus on anything I was doing. So, you may not even feel like cruising the internet for a little while. I was able to lift a gallon jug of milk about 10 days after the surgery - it felt heavy and in retrospect, I probably should have waited a few more days.

                            Yes, the first week after the surgery (in the hospital and at home) really blows! I couldn't imagine all the pain I was in and questioned myself whether it was all worth it (7 1/2 weeks later - it is all worth it!). I spent the first four-five weeks focusing on my breathing and walking around the house. I found it really difficult to take a big breath until just a couple of weeks ago. So, religiously use the breathing thing they give you at the hospital! I still haven't sneezed, had a few times when the sneeze was there and then my body just kind of halted the process - it hurt like crazy! Coughing isn't a whole lot of fun either, but you need to do it as per the instructions of the nurses and doctors.

                            We do have a recliner and I found it really helpful, but I would also think that some strategically placed pillows on a sofa or bed would work just as well. The first couple of nights out of the hospital I could not lie in the bed and ended up sleeping in the recliner. But I was able to go back to bed after just a few days of being home, but needed quite a few pillows.

                            I do think you should take it easy, pushing yourself in small increments. Your body will tell you if you've gone too far. I do think the lifting thing is quite important though - I was told you certainly do not want to cause any distress to the sternum. Anyway, you are really not going to want to lift anything like that for a couple weeks.

                            I'll be thinking of you on St Patty's day and wishing you the best.

                            Vincent

                            Comment


                            • #29
                              Re: St. Patrick's (3/17) Myectomy (wish me luck)

                              Wishing you the best - we'll be watching for updates, so I hope your wife or someone can post for you till you are able to do so yourself.

                              Best wishes - Linda

                              Comment


                              • #30
                                Re: St. Patrick's (3/17) Myectomy (wish me luck)

                                M-Day minus 4
                                Sun 3/14 2011

                                4 more days! Yikes!

                                Spent the day reworking the layout of the living room with my wife, assuming that the couch should be positioned where I can better zone out to watch the TV for hours on end. Sort of exhausting, pushing furniture around. Revealed a bunch of filthy dust bunnies, spilled coffee stains, and even a cookie stash (!) from under a couch that hasn't been moved in forever. Now we have to see if we can get the carpet cleaned before we head off to the hospital - with the new layout, the grungy traffic pattern looks really odd.

                                We also did a lot of shopping - bought curtains to darken the room for daytime TV viewing, got extra pillows, a shower stool, slip-on (no tie) shoes, new PJs for the hospital (I usually sleep in a T-shirt; somehow I'm getting the impression lifting my arms over my head for a T-shirt will get tough) and found Isotoner slippers on sale at Sears for $9 (normally $24). They seem to have a good grip, and make my feet feel very nice and cozy.

                                I know I must be missing something, but that will be a plus for not being far from home for this. Easy to find whatever we're missing.

                                I had another strange dream last night - This whole event feels so much like I'm preparing for something very transformative, and in my dream, I woke up on the far side transformed all right - I couldn't see my reflection in a mirror anymore, because the operation had turned me into a vampire. A major adjustment, not being able to go out during the day, but the hospital had plenty of blood, was happy to discharged me at night, and with the help of a great online vampire bulletin board, I found I was able to adjust...But I woke up when I made the mistake of trying to watch a sunrise, forgetting how painful that would become as it began to roast me to a crisp. One little mistake, so much pain...

                                Weird.

                                I expect nobody out there has had trouble seeing themselves in a mirror or developed a serious thirst for blood once their procedure was over and done, correct? Right? Right?!?

                                Sheesh - I think I'm beginning to go a bit nuts here.

                                More later,

                                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

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