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

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  • #16
    Re: ah, the joys of the bumps in the road of a myectomy...

    wow felix

    you are having a lot tougher time with this than i did, ours was done at the same time, and all i'm having trouble with is trying not to do things i'm not suposed to do, are you running fever or they gave me pepcid in the hospital daily to keep the acids down, you may want to try those before you eat to calm your stomach a bit first and reduce the acid before he eats,Sandy i hope you are holding up through this, i can't see fluid in the lungs causing the nausea as i have fluid in my lungs and have had it since surgery they expected it because of just having heart surgery, but i never got nausea because of it, like i said i hope things are looking up for you soon


    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


    • #17
      Re: ah, the joys of the bumps in the road of a myectomy...

      back from the ER....

      the nausea got so bad and noone would perscribe anything, so finally
      the cardiologist said to go to the ER, so we did. 4+ hours later, the bloodwork showed nothing abnormal, but we got our perscription for
      zofran. What I wanted from the start. could have saved the insurance
      co lots of money.

      so now felix is less nauseous. next trick is to actually get him to
      eat something.

      off to sleep. it has been a long night.

      sandy
      Fx

      Comment


      • #18
        Re: ah, the joys of the bumps in the road of a myectomy...

        felix is still feeling horrible, but was able to hold down some carnation
        instant breakfast this morning. the Zofran is helping some. WE are still
        waiting to hear back from his local cardiologist for the next step. I
        suggested that he not take his multivitamin this morning and try to keep
        himself "pill free" for the day. the other meds he takes in the evening,
        now that he is off hte potassium. we want to figure out WHY felix has
        not had much of an appetite and now is so nauseous. bloodwork looked
        ok. I asked the cardiologist about doing another echo since he had
        fluid at one point in the heart and he said that based on his exam of
        felix yesterday, he felt this was no longer the case. Why not just
        do the echo? this might be a problem. could there be a neural issue
        as well after being on the heart/lung machine? We really want to talk
        to Dr maron, but he is in NO , correct?

        the pulminary dr has not called either to set up an appt.

        We are actually at the point here , where I need some help and though
        neither one of us really wanted to get here, we are probably going to
        hire a live in for a couple weeks to help with the kids, the house, the
        errands, the driving, etc. I have lots of friends, but I keep needing them
        and last night I felt bad just dumping my kids off again. they need
        stability.. Alyssa came back home this morning and she is almost afraid
        of her daddy now; she knows that last night something not good happened. jack goes with the flow at 3, but I am sure that he
        is also affected since in the last 3 weeks he has slept in 3 different
        places 4 times.

        I want to thank you for all your support here. I know that months
        down the road this will be a faint memory and blimp in our lives, but
        right now this is controlling our lives. you are all so great and I am
        glad FElix found this board. (and Pam thanks for the phone call last
        night as well!)

        sandy

        Comment


        • #19
          Re: ah, the joys of the bumps in the road of a myectomy...

          Sandy,

          Just believe it will get better! The help may be nice for all in the family. I think Dr. Maron is supposed to be back tomorrow or the next day. It doesn't seem quite fast enough though!

          I will keep your family in my thoughts. Hang in there!

          Mary S.

          Comment


          • #20
            Re: ah, the joys of the bumps in the road of a myectomy...

            Felix and Sandy,

            I left Lisa a message at the ACC conference that you had called and wanted to speak with her. She is very busy down there and will call you back as soon as she can. She was not sure if it would be today but more than likely it will be tomorrow.

            If there is anything else, let me know.

            Kelly
            Life is 10% what happens to you and 90% what you do with what happens to you.

            Comment


            • #21
              Re: ah, the joys of the bumps in the road of a myectomy...

              Dear Sandy and Felix,

              I hope that both of you get some answers and can feel better really soon. Take care.

              Reenie
              Reenie

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

              Comment


              • #22
                Re: ah, the joys of the bumps in the road of a myectomy...

                we did hear back from the pulminary guy who said there is not enough
                fluid to warrent a drainage.

                now if only our local cardiologist would call back. We really need Dr
                maron and him to have a little pow-wow once Dr maron is back in
                the office.

                I got felix to eat a bit, but the nausea is still so bad, even with zofran.
                I just wish we could get to root cause. I believe if we get over this
                hurdle recovery is going to start to speed up quickly. I know that
                felix is having less and less trouble with the stairs and walking, etc

                Sandy

                Comment


                • #23
                  Re: ah, the joys of the bumps in the road of a myectomy...

                  Sandy and Felix , you're welcome . I'm not sure how much help I was but you know we are all here for you both. It is very hard feeling so much nausea. I remember lying in my bed home and in the hospital those 3 times thinking , this is almost worse then going through the surgery. It comes constant and then in waves when you do get a break. For some of us I think it is just the whole experience with anesthesia and all that takes its' toll and makes the nausea linger. I know you must be doing this but if not be sure to time the Zofran and plan the small feedings as soon as the best effect is, when he feels the most relief. Make those feedings as high protien as possible. I ate a lot of cereal and drank a lot of carnation instant breakfast with fortified dry milk added. Sometimes the only thing that felt ok was fresh fruit like they had on the hospital menu. Try to find what appeals the most and stay with it untill this passes. Take lots of deep breaths and I know this hurts but use your inspirometer 10 times an hour. Good luck and I will hope that nausea goes somewhere else very soon. 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


                  • #24
                    Re: ah, the joys of the bumps in the road of a myectomy...

                    Does Felix have any stomach problems as well as the HCM?

                    I have Crohn's disease and when I have a flare up the neasea is relentless. I get dehydrated very easily. Needless to say if it goes on long enough my heart starts to act up as well. Nothing like being in CHF and dehydrated at the same time (yes that can happen). I wasn't diagnosed with the Crohn's until after I was having bad neasea after surgery. The symptoms I had I thought were normal for most of my life.

                    Just a thought!

                    Mary S.

                    Comment


                    • #25
                      Re: ah, the joys of the bumps in the road of a myectomy...

                      felix had a stomach tough as nails before the surgery. he has never
                      experienced this before. (unlike all us women wh o have been pregnant)

                      sandy

                      Comment


                      • #26
                        Re: ah, the joys of the bumps in the road of a myectomy...

                        it seems as if a day of "cleansing" ,i.e. not taking his vitamins or the
                        drugs we think may have had something to do with this, seems to
                        be helping. he , of course, has to take his required meds tonight. he is also taking lots of antacids as well. He says that
                        compared to last night this time its much improved.

                        heres hoping this nausea problem goes away.!!!
                        the good news is that he got 2 10 minute walks on the treadmill
                        at 1.8 mph

                        sandy
                        Fx

                        Comment


                        • #27
                          Re: ah, the joys of the bumps in the road of a myectomy...

                          Hi folks, its Felix himself and not his wife.
                          If I'm on the computer than I must be feeling better. I got a 'decent' nights sleep and woke up this AM not feeling too bad.
                          My best guess on what happened was I overdosed on potassium. When they give you lasiks to get the fluid levels down, they also ask you to take potassium suppliments because its suppossed to lower your levels.
                          Well, my cardiologist reported that the blood tests showed a normal range of potassium in my system, but almost a high level. That was after 3 days of lasiks.
                          Today just may be a good day. I've already eaten and walked.
                          Fx

                          Comment


                          • #28
                            Re: ah, the joys of the bumps in the road of a myectomy...

                            Felix, Glad to hear this . Finally a look at that light through the tunnel! I'm celebrating this day for you. Keep feeling better . 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


                            • #29
                              Re: ah, the joys of the bumps in the road of a myectomy...

                              That is great news, come to think of it the nurse would tell me every morning what my potassium was and said they wanted to keep it at normal levels, in fact there was a couple of days i didn't get the potassium at all, I hope you continue to feel better each and every day, keep us posted


                              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


                              • #30
                                Re: ah, the joys of the bumps in the road of a myectomy...

                                Thanks Felix,
                                You just made my whole day. That is great news.

                                I take 20 mg of Potassium HCL (CR) a day to offset the effects of 40 mg of Lasix, and so far have stayed in the middle range of normal. I used to take as much as 160 mg of Lasix, but never had trouble with too little Potassium in my system. Now I have kidney problems, so my Potassium level is checked quite often.

                                I found this on the net.

                                Serum potassium does not usually go up with high dietary intake of potassium, so toxicity is not much of a problem in healthy individuals, as the kidneys readily excrete any excess of potassium. Only renal failure, heart or liver disease, certain drugs, metabolic acidosis, Addison's disease, major burns or muscle trauma, gastrointestinal bleeding, etc could lead to hyperkalemia (elevated blood potassium).
                                Supplementing too much potassium may affect the balance of other electrolytes such as magnesium, sodium, chloride, etc, or it may cause irregular heartbeat, vomiting or diarrhea.


                                It was on http://www.acu-cell.com/znk.html if you want to read the whole article.

                                Hope this is the end of your ‘adventures’ and now you’ll heal fast. Send our love to Sandy, she’s a real trouper.
                                Burt

                                Comment

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