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4 days in Cleveland and still counting

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DianeE Diagnosed 2000, Myectomy at CCF May 2012, Local COE= University of Kansas Hospital Married 2 adult sons, screened & clear Find out more about DianeE
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  • kirbyj
    replied
    Re: 4 days in Cleveland and still counting

    In my case I started to feel better after six to eight weeks. I had a bout of atrial fibrillation that complicated my recovery but that went away three weeks after the surgery. At six months I could do things I hadn't done in a long time, such as brisk walking. I have always liked walking very fast, as if I always had important things to do, and it was great to have that spring back in my step. I no longer trailed my wife, but instead, had her asking me to slow down!

    Now at two years post surgery I feel really great! I can do things that I had forgotten I could do, such as garden all day. You might think that all the progress after a myectomy would be in the first year, but I have to say, this second year has added a lot to my endurance.

    Diane, hang in there. It gets better little by little. In my experience it has been so worth the wait. I did question it at times in the early days, but now I am very glad I did the surgery.

    Leave a comment:


  • CeeBee
    replied
    Re: 4 days in Cleveland and still counting

    Diane, the "worst"-case scenario is that the myectomy doesn't benefit someone significantly in terms of symptoms, which is true for some people, but they told you that your heart had been significantly improved by the surgery, correct? That means you're just not feeling the improvement, even though your heart is in better shape than it was. For me, honestly, at six months, I was still wondering if the ordeal had been worth it. You did the right thing, and you gotta trust that now you're through the hard part, you'll eventually benefit. My two cents worth, is, right now, let the people in cardiac rehab help you figure out landmarks (I guess that's benchmarks) and an exercise plan. They're great at that, and they'll be able to demonstrate your improvement FOR you. Good luck & best wishes.

    Leave a comment:


  • mike83
    replied
    Re: 4 days in Cleveland and still counting

    Hi Diane,

    I was in really good shape and young before my surgery and I didn't start feeling like myself until the 8 week mark. Really, for me, I just woke up one day and felt like myself again. Listen to your body. It will tell you everything you need to know. Especially if your feeling better or worse. Try not to have expectations. In my situation, I had to learn that each day was a milestone instead of living week to week looking for improvements. The were tiny but after awhile, all the tiny improvements amounted to feeling good.

    Best,
    Mike

    Leave a comment:


  • Linda
    replied
    Re: 4 days in Cleveland and still counting

    Diane - glad you are home and improving. It's good to hear other people's experiences, but remember that each person is different - you will recover at your own rate. You had complications with the lungs that need time to clear also - glad you are doing the cardiac rehab - much support there -it will be good to connect with other people with similar experiences, but remember again, their situation is different so be sure to set goals for you, work towards them. Others in the program may have had heart surgery, but the underlying problem will not be the same as yours.

    Best wishes - Linda

    Leave a comment:


  • mbcube
    replied
    Re: 4 days in Cleveland and still counting

    Its not instantaneous, and due to the fact your recovering form Open Heart Surgery, its a bit hard to find that baseline you knew before. Once your able to walk more - say 2-4 blocks, it occurs to you that your feeling better. For some its a couple of weeks - for others a solid month- month & a half.

    Leave a comment:


  • gfox42
    replied
    Re: 4 days in Cleveland and still counting

    Hi Diane,
    I don't think I was sure I was doing a lot better until about 5 or 6 weeks after leaving the hospital. Part of that was due to some complications I had (that were finally all handled by that point), and part of it was . . . well, people respond differently.


    Gordon

    Leave a comment:


  • DianeE
    replied
    Re: 4 days in Cleveland and still counting

    Hi everyone. I am sorry I haven't weighed in for a little while. To be honest I simply didn't have the energy to compose my thoughts enough to write anythng coherent. I am happy to say that slowly but surely my energy seems to be coming back. I am starting cardiac rehab next week and looking forward to it. I need someone to guide me through what is "doing too much" and what is not doing enough. I don't seem to be able to judge that for myself until after I have overdone it enough to suffer for it. I have been told by so many that everyone heals at their own pace and not to compare myself to others. I have to admit it was hard to not get frustrated while I was in CCF watching patients that were 20 years older than me walk the hallways with relative ease while I needed help getting myself to the restroom. I think my expectations were that due to my overall good health I would be the poster child for myectomy recovery.Boy was I wrong. As it turned out I needed a blood transfusion and also need my lungs tapped of the liquid that was building up in them. However once I finally got home my recovery has sped up and I look forward to each day.

    I want to thank everyone here that kept track of my while I was in the hospital. The notes and emails were very encouraging and meant a lot. My husband was very impressed with our little community here. In fact, I heard him telling other HCM patients on my floor to make sure they checked out the website too!

    I do have a question for all of you who have had a myectomy. When did you start realizing the benefits of the surgery? I know some have said "right away" but that is not the case for me. I am assuming that I will need to completely heal from surgery first. For example I still get winded walking up any kind of incline and overall fatigue is still a problem. I am hoping that will slowly improve as my stamina slowly improves.

    Diane
    Myectomy at CCF
    May 2012

    Leave a comment:


  • mike83
    replied
    Re: 4 days in Cleveland and still counting

    Hi Diane,

    I'm very happy and proud you made it through. Even though it doesn't seem like it was worth it yet, it will come. I'm on week 8 and started walking/jogging which I never thought I'd ever get to do again. Nothing but blue skies ahead!

    Take Care,
    Mike

    Leave a comment:


  • mtlieb
    replied
    Re: 4 days in Cleveland and still counting

    Diane,

    I'm hoping your current issues subside quickly and that you have nothing but smooth sailing from here on in. You are correct that it is no walk in the park, but you're in one of the best places possible to be receiving the care you need. As Gordon said he went through the same thing, and look how well he is doing. Try to focus on the positive and please continue to keep us updated on your progress.

    P.S. I had my myectomy at Cleveland Clinic before they built the new heart center and I understand that it is just fantastic! I'm sorta envious in a wierd kinda way.

    Is it as nice as everyone says it is?

    Jim

    Leave a comment:


  • gfox42
    replied
    Re: 4 days in Cleveland and still counting

    Hi Diane,
    No fun. I had a lung problem too; once they drained it I was *much* better. Hope you feel better soon!

    Gordon

    Leave a comment:


  • DianeE
    replied
    Re: 4 days in Cleveland and still counting

    Originally posted by Moosedreams View Post
    Congrats. Keep up the good work on the blowy thing and walking. Each day you'll get a little stronger - like learning to walk again. Have to say that was a speady surgery. Mine was over twice that long. Keep up the faith and get your rest. Best wishes.

    Toodle pip... Moosedreams
    Today was a pretty miserable day I struggled all day trying to catch my breath. Panting is good term to describe it. After a steady parade of nurses, technicians, aides and doctors it was determined I neededed fluid drained out of my right lung cavity. Although I am still a little SOB it was a big improvement. Maybe tomorrow I will out walking as they have yet to encourage this because I could not catch my Breath and my heart rate would jump so dramatically every time I would just stand up.

    Again, this is a fantastic place and have nothing but wonderful care here. For those facing this surgery it is no walk in the park, but if you choose to have it at Cleveland you will be in nothing but excellent care. Will keep you posted as hopefully tomorrow will be the day I start to see a real improvement and actually be able to the benefits from the surgery.

    Leave a comment:


  • Moosedreams
    replied
    Re: 4 days in Cleveland and still counting

    Congrats. Keep up the good work on the blowy thing and walking. Each day you'll get a little stronger - like learning to walk again. Have to say that was a speady surgery. Mine was over twice that long. Keep up the faith and get your rest. Best wishes.

    Toodle pip... Moosedreams

    Leave a comment:


  • Bruce42
    replied
    Re: 4 days in Cleveland and still counting

    Congratulations on making it through, Diane! Get your rest, keep using the puffy toy, and I hope you're feeling better soon. Hang in there!

    P.S. I think my favorite doc there was Dr. Collette, the recovery specialist. I hope she's there with you--she's great.

    Leave a comment:


  • Cynaburst
    replied
    Re: 4 days in Cleveland and still counting

    You will probably feel better after the transfusion. I felt worse from the anemia than anything I think. I was just about to the point of needing a transfusion, but they didn't give me one in the end and I was able to recover by myself. I only ate food with iron in it for a few months.

    Leave a comment:


  • CeeBee
    replied
    Re: 4 days in Cleveland and still counting

    I agree - you're in the toughest stretch, and it will start to get better soon! Absolute best luck, take it easy on yourself, and rest, rest, rest. Oh, and walk. You know the drill. Good luck.

    Leave a comment:

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