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

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  • #46
    Re: ah, the joys of the bumps in the road of a myectomy...

    Burt that was very funny ,thank you. Pam
    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


    • #47
      Re: ah, the joys of the bumps in the road of a myectomy...

      Your quite welcome. Actually I was primarily trying to lighten Sandy's day. Hey, two stones with one bird - and all that. .
      Burt

      Comment


      • #48
        Re: ah, the joys of the bumps in the road of a myectomy...

        Sandy and Felix,
        I am no longer in sunny Florida nor sunny Louisiana. I am here in snowy NJ. It appears I have missed quite a bit of if your recovery here on the message board. From what I can follow it seems all is well now.
        How are you feeling?
        best wishes,
        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

        Comment


        • #49
          Re: ah, the joys of the bumps in the road of a myectomy...

          figured I would give an update... wed was 4 weeks since the surgery.
          The big news is that this week there were no major problems. some of
          the minor stuff that felix is facing now:

          1. tireness. Part of this is not sleeping well. he has never been a good
          sleeper but he is now up in the middle of the night even moreso. part
          of the problem is that he is normally a side/belly sleeper, which is
          not really possible right now (some sleeping on right side, but not left,
          and definately not belly). The other part of this is that he is so
          tired that he needs a nap still, but wakes up from the nap and is
          not refreshed, but rather feels yucky. mornings are definately his
          best time. Last night was the first time he slept in our bed, versus
          the guest bed, so I can report that the snoring is gone.

          2. lack of appetite. still at 4 weeks out, food does not appeal to felix
          at all. he is never hungry, but he forces himself to eat. he does try
          to eat high protein. I really want to go out for a nice dinner tomorrow night, but I am doubtful it will happen. We have a cooking party to go
          to a week from sat, and even that seems doubtful. The side affect
          of him losing 20lbs has been wonderful though, I hate to say. He had
          gained a bit before the surgery. I am hoping that after he heals up he keeps up the walks and watches what he eats, and can keep the weight
          off. I really think this will help him overall.

          3. the brain is still "fuzzy". AS much as felix loves to write, he cannot
          get himself to do it. Also, he enjoys reading and finds that hard to still
          do. I would like him to set up our wireless network in our house, but
          he mentally is not clear enough to do that yet.

          So on the positives, he is walking more every day, he is getting out some,
          (went to watch the kids perform at school yesterday), and his moods
          are getting better (something that is helpful to me).

          On the negatives, he is still sluggish , tired, and has no interest in food.

          He is suppose to go back to work in 2 weeks. I am beginning to think
          that he needs to go back part time, but its up to his dr and the disability
          people to work that out.

          Sandy

          Comment


          • #50
            Re: ah, the joys of the bumps in the road of a myectomy...

            Sandy, you guys are still in my prayers.

            Reenie
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

            Comment


            • #51
              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!
              RONNIE

              Comment


              • #52
                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

                Comment


                • #53
                  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
                  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


                  • #54
                    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

                    Comment


                    • #55
                      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
                      Diagnosed 2003
                      Myectomy 2-23-2004
                      Husband: Ken
                      Son: John diagnosed 2004
                      Daughter: Janet (free of HCM)

                      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                      Comment


                      • #56
                        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

                        Comment


                        • #57
                          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
                          "Some days you're the dog... some days you're the hydrant."

                          Comment


                          • #58
                            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
                            Knowledge is power ... Stay informed!
                            YOU can make a difference - all you have to do is try!

                            Dx age 12 current age 46 and counting!
                            lost: 5 family members to HCM (SCD, Stroke, CHF)
                            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                            Therapy - ICD (implanted 97, 01, 04 and 11, medication
                            Currently not obstructed
                            Complications - unnecessary pacemaker and stroke (unrelated to each other)

                            Comment


                            • #59
                              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!
                              Fx

                              Comment


                              • #60
                                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
                                Diagnosed 2003
                                Myectomy 2-23-2004
                                Husband: Ken
                                Son: John diagnosed 2004
                                Daughter: Janet (free of HCM)

                                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                                Comment

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