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Two weeks since myectomy

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  • Two weeks since myectomy

    Hi guys. Its two weeks since my myectomy so time for a formal update on my progress (and a new thread).

    As some of you will know from the last thread, my myectomy here in Melbourne Australia was complicated by internal bleeding and 5 days of atrial fibrillation. Less than a day after the myectomy, I was rushed back in for emergency surgery to repair a ruptured blood vessel. Ironically, the bleeding was unrelated to the actual myectomy, but rather was the result of one of the temporary pacing leads tearing a blood vessel. The surgeon explained that this was a freak incident, which could have happened with any cardiac surgery.

    Other than fighting for my life in ICU for 2-3 days, the recovery has been difficult. The worst part has been the sheer exhaustion. I have no way of knowing if this is normal, given that I am only two weeks out. I've also been feeling the blues quite a bit, which is not normal for me. But other than this, the doctors say all my vital signs are normal. That is some relief after what I've been through, but the extreme fatique is a constant reminder of what I've been through.

    Anyway, I'll send regular updates on my recovery (as per Felix's instructions!). I would greatly appreciate hearing from others about their own myectomy recovery experiences.

    Many thanks,

    Paul
    Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

  • #2
    Hi Paul,

    You've had such a rough ride with the myectomy and complications, I'm so happy that you are now 2 weeks post-myectomy, each week will no doubt find you improving, even if it seems all too slowly. After all that you have been through I'm not surprised to hear that your exhaustion is so prevalent right now. With any surgery you tend to feel that way just from all the meds, anesthesia and 'trauma' to the body. The complications that you experienced no doubt took another huge toll on your body that was already taxed. Hang in there, it will take some time but I'm absolutely confident that you will soon begin to feel stronger.

    As for the blues, that is also a common, unwelcome side effect of surgery, particularly open heart surgery. The entire body, including the brain, was impacted during the bypass and surgery. Gradually you should find the blues lifting but it may take a while. If they become too bad please seek additional assistance with them. However, as your strength rebuilds I think you will most likely find that your blues start to subside as well.

    Hang in there, every recovery has its challenges and yours is just a bit more involved with the complications you fought through. I hope that each day finds you a little stronger!!

    All my best,
    Lynn
    Lynn Stewart
    HOCM 4/2002
    Cleveland Myectomy Crew 8/2002

    Comment


    • #3
      Thanks for your post Lyn. Yes, my 'logical' brain keeps telling me that I will eventually be ok, but because of how extrememly weak I feel, it is hard to get that to sink in.

      I had flashbacks from the ICU the other night and had to go to my local ER as I thought I was having a stroke. This was not altogether an unreasonable assumption as I had been in non-stop A-Fib for 5 days. The ER doctors said I was ok and diagnosed me as having post traumatic stress due to the serious complications following my surgery and my time spent struggling in the ICU. This has obviously having an impact on me. But I just can't seem to shake the fatigue and weakness. I pray that each night before I go to bed I will wake up and feel refreshed and energetic.

      Thanks,

      Paul
      --------------
      American Citizen living in Melbourne Australia: Myectomy at the Royal Melbourne Hospital 2 weeks ago
      Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

      Comment


      • #4
        Hi,

        I am not sure how much support you are getting during your recovery - what I can tell you is that those with strong support, good hydration and some mild exercise (walking regularly) seem to have a better time during recovery.
        Is there anything we can do to help you during your recovery?

        Be well,
        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


        • #5
          Hi Lisa,

          I really want to know if this total exhaustion is a normal part of the recovery process. As soon as I get up in the morning I am wiped out. I want to exercise, but my body is just not up to it right now. Not knowing if this is normal or if there is something wrong is the hardest part. But I do have a wonderfully supportive wife.

          I guess I just need some advice on all this.

          Many many thanks,

          Paul
          -----------------
          American Citizen living in Melbourne Australia: Myectomy at the Royal Melbourne Hospital 2 weeks ago
          Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

          Comment


          • #6
            Hi Paul!

            Here are my thoughts on your fatigue and remember they are just opinions:

            Normally I would expect that you would be feeling refreshed after a night of sleep to a certain level at this point. With the energy slowly diminishing throughout the day following. (Although at that length of time out of the surgery I still wasn't interested in doing a a whole lot that's for certain!)

            However, there was nothing really 'normal' about what you experienced post-op. I've witnessed my own mother recuping after many bouts of fighting for her life in ICU over the years and my experience with that has shown me that total exhaustion every hour of the day from that is 'normal' in those cases for quite a while once she was out of ICU. Your body and systems were no doubt depleted during what you went through afterwards. Your body is still trying to rebound from that.

            Does that make sense? I would certainly keep checking in with your doctor(s) and asking what they expect would be your energy level now taking into consideration all that you went through. If there is a question in your mind, then you deserve to have them evaluate it and respond.

            I hope this helps a little, I know it's not absolute answer but the recovery process isn't an absolute either unfortunately.

            Wishing you the best and that soon you begin to feel more rested and recuperated - you deserve it!!
            L
            Lynn Stewart
            HOCM 4/2002
            Cleveland Myectomy Crew 8/2002

            Comment


            • #7
              Paul,

              Sorry to hear you had such a rough time.

              After Myectomy, it is hard to sleep for quite a few weeks. It does take a couple of weeks to start to feel better. In your case that may take a few extra days. But you will get to that point faster than you think.
              FX & Lisa are right, WALK WALK & WALK some more.
              You will find that there will be days that you feel 100% better than just the day before.
              At that point you will be amazed at how rapidly you progress.

              Hang in there,
              Stuart Schwartz
              Myectomy 8/31/04
              at Cleveland Clinic
              Cleveland Myectomy Club
              August 31, 2004

              Comment


              • #8
                Paul, I commented in your other post about feeling likewaking from the dead after sleeping. I too did not feel energized after waking and in fact it was so difficult to do the walking due to the fatigue , I kept getting presyncope episodes. I had to stop and wait on the walking. I did go back into a-fib and believe my heart was just not on the expected schedule as I had projected it to be. It was a slower process. They had considered tranfusing me post surgery and then waited. Even with all the transfusions you have had it will take your body some time to return to it's normal.

                Additionally for me , due to all the problems , the visiting nurse visited 2 times a week for 11 weeks. Do you have such services available to you? They could bring in a physical therapist to assist you . Another thing, are you taking in high protein? It is very important to increase the protein during this bone rebuilding time. Try supplemental high protein drinks . You can have your wife add dry milk to whole milk and add flavoring . This will fortify your milk. I was told to do this for several weeks post surgery. High energy foods are important at this time.

                Feel better 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


                • #9
                  Hi Pam,

                  Yep I know exactly what you are saying about feeling like I am dragging myself from wet cement when I get out of bed. Did you also have a-fib after your surgery while still in hospital? I did and it lasted for 5 days.

                  I don't have a visiting nurse, but will have access to a cardiologist when I go to my local hospital for cardiac rehab tomorrow. They will do some repeat blood tests tomorrow to make sure nothing is abnormal. As for my diet, I am not always hungry, but do try to eat something. I know that this is important to rebuild strength.

                  Steward and Lyn, thanks for your posts. Lyn, I'm not at that stage where I wake up energized and then feel my energy fade throughout the day. I wake up ok for a few minutes, then I am just exhausted. Its getting frustrating......

                  I'll update on how things progress with my recovery.

                  Many thanks,

                  Paul
                  Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                  Comment


                  • #10
                    Yes Paul,

                    My a-fib started on the 5th day, the day they were thinking of sending me home and I was fortunate the loading doses of amiodorone( 1200 mgs) converted me just as they were about to wheel me down to the lab. I stayed 7 days and then 4 the next time and 3 for the lung drainage. The second time was when they had to convert me. I stayed on the amio for 3 months and it did not come back. They told me my aicd did record some small 1-2 second intervals as well ,but that was all. They did tell me that about 40% of people who have open heart get a-fib post op. I guess we were the not so lucky ones.

                    I will share with you that when it happened it started with a bang and it was a very high rate. I had not factored this in as I had prepared myself for surgery. It started at 2 in the afternoon. I had trouble sleeping and I felt on fire. I managed to fall asleep for a short time and awakened at 3 AM nearly hysterical. It took a nurse well over an hour to calm me down and for me to stop sobbing. I told her to release me and that I had not signed up for all of this and this was not part of the plan. I wanted out and I wanted it to stop and that meant now. I had never felt so out of control of my life ever and it was shattering for me and very scary. The nurse was very good at what she did , cause she managed to help me regain control without major tranquilizers. I will tell you that 5 days is a lot on a recently operated heart and you have gone through a lot. My surgeon came in the next morning and comensed to demand info and explanation and to tell them they were to convert me ASAP. He said loudly ," you will not stress this newly operated on heart any longer, get it and get it done now , do you understand? no discussion!" Wow I was quite taken with his attitude.

                    There is so much to the whole myectomy and things can vary immensely from person to person. Also sometimes I think we know too much and we can easilly become overwhelmed if we do not progress the same as others. This is why I say take your pace and try to just be day by day. It will get better.

                    Thoughts for 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


                    • #11
                      Paul,

                      I know that I need a lot of time to heal. When I had my hysterectomy, I could not do anything for 3 weeks. Heck for the first 3 days after the surgery, I did not even know my name, and that was just a hysterectomy not open heart surgery.

                      I am not looking forward to having a myectomy, (if indeed they do the surgery).
                      There are so many times when I want to chicken out.

                      Please give yourself some more time, your surgery had complications.

                      Well wishes,

                      Eve
                      49 yrs. old
                      Diagnosed at 31.
                      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                      My brother passed away suddenly at 34 yrs old from HCM.
                      2 teenage children, ages 17 and 15.

                      Comment


                      • #12
                        Pam,

                        I can so identify with what you are saying about the A-fib. I had it for 5 days, night and day and it would make me SOB and feel out of control and helpless. I could not sleep for more than 20 minutes before waking up. It took them 5 days to do my cardioversion and boy was I relieved when they did it.

                        Meanwhile the recovery continues and at times I feel the same sense of helplessness I did when I was in hospital with the A-fib. I am trying to stay positive and hope the days fly by.

                        Eve, I hope that my experience has not put you off doing your myectomy. If the experts agree it would help you then you should do it. My case seems to be unusually difficult due to all the complications and so you shouldn't think of it as normal. There are numerous stories on the Board of smooth surgeries with a positive outcome. Hopefully in a few weeks or months I can report back with positive news.

                        Best wishes to you guys.

                        Paul
                        Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                        Comment


                        • #13
                          Hi Paul,

                          I hope you are feeling better today.

                          It was nice of you to be so thoughtful, but your experience did not put me off from doing the myectomy, but thank you for mentioning it. My 2 biggest concerns for me are 1. the concentric part of my left ventricle and 2. the stiffness of my heart.

                          I hope you are geting better everyday.

                          Healing thoughts and wishes to you dear.

                          Eve
                          49 yrs. old
                          Diagnosed at 31.
                          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                          My brother passed away suddenly at 34 yrs old from HCM.
                          2 teenage children, ages 17 and 15.

                          Comment


                          • #14
                            Paul, how are you today?

                            Reenie
                            Reenie

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

                            Comment


                            • #15
                              Hi Reenie, Eve and everyone,

                              The blues seem to be lifting a bit this last day or two, which is a big relief as I just didn't know what to do with myself I was so miserable. I am still very tired though. I have cardiac rehab today and just don't know how I will cope, but I will do it anyway. I don't think I've turned that "corner" yet but I'll definatetly give a report when I do.

                              Eve, what have the experts said about the outcome of a myectomy for you? I know that there are some ways of being able to tell if you will be helped. I know you have concentric HCM, but it sounds like you must also be obstructed or else they would not be doing the myectomy, right? my surgeon seemed convinced that my symptoms were largely being caused by the obstruction, which was related to a severe case of SAM. Thus, he believed that I was a good candidate for surgery.

                              I also found out that the surgeon told my wife that my surgery took twice as long as usual because of the large amount of tissue that had to be removed. Apparently my surgeon had never had to remove so much before.

                              Take care guys,

                              Paul
                              Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                              Comment

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