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Had my septal myectomy at Tufts Medical Center

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  • Had my septal myectomy at Tufts Medical Center

    From the outset let me say that my experience at Tufts was 99% positive. From the initial consult through discharge after surgery everyone I met was wonderful. They were kind, caring and helpful. When the room was too warm they brought me a fan; when I was uncomfortable in the recliner they found me a foot stool; when I couldn’t find anything I liked on the food menu they made me protein shakes. They could not have been nicer or more helpful.

    My experience at Tufts began with a referral from my regular cardiologist. He had been treating me for about 15 years and my symptoms had been reasonably well managed with beta blockers. At a routine follow-up visit I reported an episode of pre syncope I had a week earlier while driving. One echocardiogram and 48 hour Holter later he recommended I go to Tufts for further evaluation.

    Tufts scheduled me for a two day visit. Day one was a series of tests and day two was a consult to discuss the results. Testing included blood work, X-ray, ECG and echocardiogram. I was originally scheduled for a stress echo but my obstruction was readily apparent on the base echo and the stress portion was not required.

    At the consult, we (my wife and I) initially met with a physicians assistant who took my history and other preliminary information. We were then joined by Dr. Barry Maron. He explained the test results and then gave me my options: septal myectomy, alcohol ablation or Norpace. We ruled out alcohol ablation quickly and it came down to myectomy or Norpace.

    I’m a retired engineer and worked my entire career in the medical device industry, most recently for a company that makes cardiac assist devices. I have observed several open heart surgeries. So I had a pretty good idea just what they were going to do to me if I chose the myectomy. And I wasn’t ready for that. On the other hand while Norpace would alleviate symptoms there were questions about how effective it would be and for how long. Dr. Maron explained that in most cases the myectomy was a definitive solution. He showed me data on their five and ten year outcomes following myectomy and they were very good. He explained the major risks were stroke and death and that they were less than 1% at their institution. He also discussed quality of life, that I had many years left (I am currently 67) and asked how I wanted to spend them. My wife pointed out that while I thought I had been doing OK that in reality I had gradually been adapting my lifestyle to work around the limitation imposed on me by my HCM. I went home with a lot of thinking to do.

    I wasn’t so much afraid of dying. Their low risk numbers helped alleviate that fear. I was afraid of how bad I was going to feel after the surgery and how long it was going to take me to recover from it. But, Dr. Maron’s comment about my future quality of life stuck in my mind and I finally decided to go ahead with the myectomy. As for the Norpace, I figured I was only delaying the inevitable and that I would end up right back where I was, only older.

    After informing Tufts of my decision they called back with a surgery date about 6 weeks out. Since my wife and I had been planning an extended RV trip we settled on a date about 10 weeks out. My pre-op testing was scheduled for two weeks before my surgical date. Shortly after making the decision I scheduled an appointment to meet the surgeon, Dr. Rastegar, to discuss the details of the surgery. I left that appointment feeling quite confident.

    For both my initial evaluation and my pre-op testingTufts sent me comprehensive info packets that described where I had to be and when, what I needed to bring with me, what they were going to do and what I needed to do afterwards.

    At pre-op testing they did the usual blood work and x-ray. They also did a cardiac catheterization. During the cath they measured both left and right side pressure gradients and imaged the coronary arteries. Since they were going to have me open for the myectomy they might as well fix any coronary blockages they found. Fortunately they didn’t find any. Again, during this procedure they kept me informed of every step they were going to take and what I might expect to feel. The only unpleasant part was the 15 minutes of pressure they applied to my femoral artery in my groin to close the wound. This guy had strong hands. After that I had to remain in the bed for 3 hours. Then they got me up and walking to make sure the wound would not reopen. Before leaving I met with my surgeon, Dr. Rastegar, for final questions and consent.

    On the day of surgery I arrived at the hospital at 6:00 a.m. There was not a lot of waiting around. They took me to the pre-op room where final preparations and meetings with the surgical and anesthesia staff took place. Then they wheeled me down to the OR. I recall a few of the preparations they were making on me but it wasn’t long before it was lights out for me.

    I recall waking up in the ICU (they don’t have a separate recovery room) and seeing my family there. And yes, my first thought was “Cool, I made it.” I do not remember having or them removing my endotracheal tube, another part that I had been dreading. After a short visit by my family I think I slept the rest of the day.

    The next morning (I think) they removed all the wires and tubes from me except for a couple of IV lines. I had expected the removal of the chest tubes to be painful, but it wasn’t. It just felt weird. Then they got me out of bed for a walk. I was eager to get that started but the first one was probably only 15 feet away from the bed and then back. The next was out around the nurses station and each one after was progressively longer. I think they would have moved me later that day to the step-down unit but no bed was available so I stayed in the ICU one more night.

    I needed quite a bit of help the first few days in the step-down unit. Getting in and out of bed or the recliner was painful, as was trying to change position in either. My walks also needed to be supervised. But it wasn’t long before I could get up and down and go for walks around the unit on my own. My first shower which was around day 5 was wonderful.

    The absolute worst part of the experience was the oxycodone. It really messed with my head. I slept fitfully and had bizarre dreams. And as I drifted in and out of sleep I would go right back into the same dream. By day 4 I gave up the oxy and relied solely on Tylenol for pain relief. They did prescribe Tramadol as an alternative to the oxy but the pain was not as bad as I had been anticipating and I didn’t need it.

    I had a small pericardial effusion that they wanted to monitor so I stayed in the hospital for a full 7 days. That was not really a bad thing since by the time I left I felt much stronger and confident in my ability to get around.

    The 1% bad…. the food. I can’t say much for that. Fortunately my wife and daughter brought me coffee from Starbucks, soup from Au Bon Pain (downstairs) and some home cooked meals. We even set up a “dining room table” down the hall in the solarium one evening.

    Once home I progressed rapidly. I was up and around, washing dishes, doing other light chores and going out for walks. I napped daily. By the beginning of week two post-surgery, friends were taking me out for breakfast or lunch. I noted improvement almost daily. There were a few days where I was more tired or hurt more than the day before, probably from overdoing it. But, overall, my recovery was faster and less painful than I had expected when first deciding to do this. Now, 5 weeks out, I’m doing most anything I want (within reason) and walking 2 miles, 5 times a week. There have been no recurrence of any of my symptoms and at this point I consider it a total success.

    I feel very fortunate and wish anyone who chooses this option the same positive experience I have had.

    Pete


  • #2
    Pete, thanks so much for posting this! It should be quite helpful to others considering myectomy, and considering Tufts.

    Gordon
    Myectomy on Feb. 5, 2007.

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    • #3
      Pete, thank you for sharing your story. My husband will have the procedure done on Dec 19 at Tufts. Your story makes me feel reassured that we made the right decision. We have had a wonderful experience with the folks from Tufts so far and am confident that he is in the best of hands. As a wife and his caretaker, I wonder how your wife fared through the surgery and recovery? What advise might she have for me? Thanks for the heads up on the food! Sounds like I need to make my familiar with area restaurants!

      All the best to you in your continued recovery.
      Sally

      Comment


      • #4
        Sally, a couple of small things maybe, but as my recovery was smooth and uneventful, nothing special comes to mind. She purchased a wedge pillow with a 10" lift so that I didn't have to sleep flat on my back. That was quite helpful, particularly when napping on the couch. Bedtime was a bit frustrating for me at first. I don't do well sleeping on my back, and trying to sleep on my side was uncomfortable at first. Extra pillows to put under my knees and wrap my arms around were helpful.

        After surgery they should give him a "clutch pillow". He will hold it to his chest to reduce the pain if he needs to cough or sneeze. Once I got home I was always leaving mine behind when I moved around. My wife did her best to keep it with me but the few times I got caught without it were unpleasant. I took mine with me in the car and on walks. I'm sure it amused a few people to see this guy walking the local rail trail carrying a red, heart-shaped pillow.

        Lastly, be prepared to put up with a back-seat driver

        All the best to you,
        Pete

        Comment


        • #5
          Pete, I have heard of the infamous red pillow. Perhaps I should consider adding a leash to it and attach to my husband's arm! It sounds like our adjustable bed will be perfect for him then. I truly am appreciative of all of your advise.

          Can't believe the surgery is less than two weeks away. That's two weeks closer to beginning a normal lifestyle once again. My husband and I met at a gym, 15 years later he can barely walk to the end of our driveway. Can't wait to start hiking the White Mountains again!

          Thanks again and Happy Holidays to you!

          Sally

          Comment


          • #6
            There are a few things you need to consider when choosing a pillow https://www.youtube.com/watch?v=wYFOYC-Bz10 so not to complain later that about neck pain or headaches. So, the position of the head. The shoulders only touch the edge of the pillow, only the neck and head lie on it. If the model is with a roller and its height matches your shoulder then everything is fine. The ideal width of the bedding is equal to the width of your shoulders. Then it will be extremely comfortable to sleep.

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