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ah, the joys of the bumps in the road of a myectomy...

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  • Lisa Salberg
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    Step by step... it sounds like it is all coming together!

    Best wishes,
    Lisa

    Leave a comment:


  • Cynaburst
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    Sandy - I think that it is normal to have some forgetfulnesss/inability to focus/problems with attention span after major surgery. I mentioned before that I had a 7 hour brain surgery. I had all of these problems, and was fuzzy for months. I really think I began to improve only after I went back to work a year and three months after my surgery.

    That will also improve, just give it time. They say it takes a year for the anesthesia to leave your system.

    Leave a comment:


  • sandylevitt
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    the monday morning update. maybe felix will update this thread himself
    at some point.

    Last week was an uneventful week, which was a good thing. Things
    are getting better and felix is going to return to work for 1/2 days
    starting wednesday. friday he saw his local cardiologist and nothing
    out of the ordinary there. His walks are getting longer and faster,
    and he makes sure to walk every day. The naps are not everyday, but
    about every other day. The fluid seems to be gone from his lungs.
    His sleeping is improving a bunch as well.
    he does say that he is experiencing more sternum pain.

    on sat he was able to go with us to Alyssa's gymnastics, then to the playground and ice cream. Sat night we went out ot dinner (yeh!!!) and
    then to the mall to shop without the kids. He still has not experienced
    hunger, but food no longer nausiates him and he is starting to enjoy
    it again.

    yesterday he was wiped out after the morning out watching Alyssas
    first T-ball game. We think that his problem yesterday was moreso
    related to allergies. the pollen is really really bad here in GA this
    time of year, and Felix always have had problems with that. it was
    also hot--hitting 82 yesterday.

    Felix is also helping out more with the kids , which is nice. His mood
    and demeaner is a lot better as well, which is real nice. I even got
    some jewelry the other day to thank me for all that I did/put up with
    in the past month. got a beautiful watch! I think being able to drive
    really helped felix feel better faster.

    mentally his is still not at the top of his game. he does forget a lot,
    so he cant complain when I repeat myself . Still waiting for my
    wireless network as well .

    WE are looking forward to our disney vacation in 4 1/2 weeks.

    sandy

    Leave a comment:


  • pmurphy
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    I'm so glad to hear that your energy level is improving and that things seem to definitely be on the upswing! I imagine that some of this beautiful Georgia spring weather we've been having may be helping. Kudos to you and Sandy for hanging in there and have fun on your date on Saturday!


    Paul

    Leave a comment:


  • sandylevitt
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    felix does love his baseball

    sandy (who also posted because she is trying to get avatar working)

    Leave a comment:


  • shirleymahoney
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    Felix

    That is great news, I think as you get back into the swing of things it will get better for you, i still have fluid in my lungs, i have my husband beat lightly on my back so i can get it up and i was also a smoker for 30 years so i'm sure that didn't help with it either, but i'm slowly getting better, my incision is healed but sternum still hurts I have a friend that had surgery 4 months ago and says her sternum is still tender to the touch, but everyone is different in the way we heal, so so keep chugging along you'll be out there throwing a BASEBALL BEFORE YOU KNOW IT

    Shirley

    Leave a comment:


  • felixdacat
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    Jim, she is a babe, so no problem calling her that.
    Jeez, this thread is getting too long. Time to start a new one.
    I just walked two miles, and mile two was just as easy as mile one.
    I have turned some kind of corner because my energy level is much higher, at least until evening.
    I still have some kind of fluid build up in the lungs because I still gurgle, especially when I'm in a reclined position. Noreen from NEMC says to do more lasiks. I have an appointment with my new cardiologist on Friday with an echo. That should be the decision maker on going back to work. I think I should start off with at least one week of part time.
    I still have no physical appetite, but I just ate a two egg omelette anyway. Yesterday was my highest calorie count since the surgery. So despite the lack of appetite, food is making it into my belly.
    My sternum still hurts and I have a feeling this will go on for at least a few more weeks. The clicking (Myectomy patients know what I mean) seems to be almost gone.
    Thanks to all for giving a damn!

    Leave a comment:


  • Lisa Salberg
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    I heard something while at the ACC meeting that I really thought was true..
    "the Bumps in the road of life...is life, its a long road."

    Just some thoughts..
    Lisa

    Leave a comment:


  • mtlieb
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    Sandy,

    Hang in there babe (if i may call you that),

    You're getting ready to turn your corner, have no worries about that. There are some of us out here, who have not had the surgery, and who still need their afternoon nap to keep us going. LOL. And by the way... good news about Felix not snoring anymore! That's worth the cost of the surgery right there!

    You both are in our thoughts and prayers... please know that it's going to be nothing but continued improvement from here on in

    Jim

    Leave a comment:


  • sandylevitt
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    felix has talked to dr maron and noreen up at NEMC, but neither had any real answers. but the good news is that after the dismal weekend, the
    last 2 days have been pretty good. felix has driven the kids to school
    in the morning (ok, he drove a few days before he was suppose to), he
    was able to sleep more on his side, and he has not had to nap. He is
    tired by evening, but this is an improvement. he also walked a mile
    today. Today was also a good day with food. he is still not hungry but
    was able to eat a bit more. so its not great, but much better than
    sat and and sunday. I am hopeful to finally have a "date" on sat night.
    The sitter is lined up. He still feels a bit fuzzy headed.. but that will
    probably get better over time. he has spent a bit more time with the kids.

    Friday is his regular appt with his cardiologist. We are thinking that
    he was suppose to go back to work a week from tomorrow, but will
    probably try to work it out to be 1/2 days for a few weeks, since mornings
    are his best time.

    I guess it is darkest before the dawn.

    sandy

    Leave a comment:


  • shirleymahoney
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    Sandy

    How long was Felix in surgery, i was in surgery for 4 hours, I thought maybe it may be the length of of the surgeries as to why he may be more nausious and how much blood did he loose, I lost very little, my dad got sick alot after surgery and his doctor said it was because of the blood loss, i mean i may just be grabbing at straws. I hope you find some answers soon, I too would call doctor Maron, I mean i still get tired, and i get very sore, but i feel i'm getting better daily.

    Shirley

    Leave a comment:


  • Linda
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    Sandy, Please do call your doctor tomorrow. I hope he is able to shed some light on the whole thing. Maybe he will be able to help you determine what expectations are reasonable for Felix. I know how discouraging those slow recoveries are esp. when others tell of how quickly they have recovered. We are all delighted by their wonderful stories, but it's so frustrating if your own recovery doesn't go like that. Remember though, that even those really great stories had a few "bumps in the road" too. I can identify all too completely with what you're going through. You just have to keep taking one day at a time, maybe just find one tiny thing that has improved and focus on that to get you thru till the next day. I do hope and pray for things to begin improving quickly for Felix and the rest of the family. Linda

    Leave a comment:


  • Pam Alexson
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    Sandy, I am sorry to hear that things are still not that good for Felix and of course that makes things very rough for you and the children. I hope that Dr. Maron will indeed shed some light or have some ideas. The fluid could be a problem if it has gotten larger. Perhaps part is that it takes quite a bit of time to build ones blood back up after major surgery and blood loss. This certainly impacts on emotional strength and stamina when you're drained physically and not sleeping well. All I can say to reassure you both is 4 1/2 weeks out is not a long time for an adult with a pre-existing heart disease to have had such major surgery. At 4 1/2 weeks I was just getting back on my feet after my second stint in the hospital and then to return again to a weekened state and be re-admitted 3 weeks later at week 7 . Although this is an unusual course it nonetheless had a few pitfalls. I believe for some of us we just have to be very patient with our progress and it may take longer then we expect. Key word expect. Try to just go through it at the pace his body can deal and find some way to keep the mind away from it . That is the only thing that I could do besides cry a lot. The holidays were worst then I could ever have anticipated. I tried to remind myself a lot that this would be all behind me one day. I tend to keep a lot inside when I am hurting so it was and still is very difficult for my family when I am quiet. They don't always realize what mountains I have been climbing even to this day . We are all different and have to express our difficulties best suited for our individual personalities. This is not at all an easy task for our loved ones dealing with us. I know Felix did the right thing for him. I never regret going through the surgery just regret still having this disease and realizing what symptoms are left remaining even after the surgery. It is still far better then it was and I know Felix knows that too. I am sorry that nausea persists. I don't know what it could be for him , it was a med for me and lasted untill it ws d/c'd at month 3. I think when he gets a few more weeks he will turn a corner. Please know I and everyone else is here for you, to offer help and support . Pam

    Leave a comment:


  • sandylevitt
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    I am starting to get very discouraged and wonder if there is some physical problem that we are missing at this point. Over the weekend,
    since I was home, I am not seeing any improvement at all. I even
    think things are sliding down again. FElix cannot function past about
    1pm at all. the food thing is also disconcerning. I cannot even mention
    food or he feels nauseous. he forces himself to eat. we are almost
    5 weeks out. basically he does his walks in the morning, sometimes
    afternoons and that this about all he can do. He still cannot really
    interact with the children at all. I had to leave him wtih our easy one
    yesterday for an hour in the morning and that was it for him for the day.
    He is also wondering when he is going to "turn a corner". he cannot
    spend the rest of his life laying in bed and watching TV past 1pm. He
    does not want to be this way. he wanted so bad to go out ot eat last
    night, but could not. tonight I have to pick up my daugher and feed
    the kids, but I know that he cannot go with me to dinner.

    I wonder even though they decided there was not enuf fluid in the
    lungs 2 weeks ago, that maybe he should get another xray. or
    maybe there is a neural issue that requires an MRI. Of maybe feeling
    this badly with no major improvement at 4 1/2 weeks out is normal? he
    has had one good day the entire time, which was a week ago sat.
    Felix is going to give a call to Dr maron tomorrow to see if he can
    shed any light on this.

    my kids really miss their daddy and I know he badly wants to participate in their lives, but he cant. they keep wondering when he is going to
    be better.

    The only really encouraging news is that felix feels like the HCM symptoms
    might be gone. I feel like we traded one set of problems for new ones.
    we have less than 6 weeks to our disney vacation/cruise. I truly hope
    by then we have this thing licked.


    Sandy

    Leave a comment:


  • Ronnie
    replied
    Re: ah, the joys of the bumps in the road of a myectomy...

    Sandy-
    I'm so happy Felix is doing so well! I remember how difficult those first weeks were, but now he's going forward! The complaints you list were similar to mine, the sleep thing for me is still not great! I slept (and still do) propped up inbed or sofa. The memory & concentration thing improves a little every day.
    I took 10 weeks off, B4 returning to work. I started driving at 8 weeks. Getting out every day, helps the Spirit & the Sleep., but weather can be a hindrance.
    You are Both Sailing Forward - you should be proud of yourselves!

    Leave a comment:

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