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

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  • #31
    Re: ah, the joys of the bumps in the road of a myectomy...

    Hi Felix, hopefully you have turned the corner on you recovery. We were all getting concerned with your difficulties impeding your recovery. It is good to hear you are sleeping better, able to manage some physical activity and now that you are starting to eat some you strength will improve too. You may have second guessed yourself somewhat wondering why you did this while dealing with the agony of recovery. I am sure you will be feeling MUCH better in short order and can move on to bigger and better things. Hang tough, it's getting better.

    Comment


    • #32
      Re: ah, the joys of the bumps in the road of a myectomy...

      Felix,

      I hadn't really thought about this until it was mentioned in a previous post, but I really do hope that your recent trials and tribulations haven't caused you to second-guess your decision to have the myectomy. You made the right choice given your circumstances, and I'm confident that in no time, you'll be leaping tall buildings in a single bound, and putting the rest of us to shame!

      As you know, i'm a big fat wuss-boy myself, and I'll be looking at a myectomy myself soon enough! Even as we speak... i'm listening to ABBA (Dancing Queen) on my MP3's and it always makes me feel so much better. Would you like me to send you the file? LOL. Okay, maybe not

      You hang in there buddy. It could be much worse... you could be me!

      You and Sandy take good care of yourselves.

      Jim
      "Some days you're the dog... some days you're the hydrant."

      Comment


      • #33
        Re: ah, the joys of the bumps in the road of a myectomy...

        Jim,

        With your talking about being a fairy and all you might have to start working for Disney (pixie dust and everything).

        Actually, I wouldn't wish that on anyone!

        Be well,
        Mary S.

        Comment


        • #34
          Re: ah, the joys of the bumps in the road of a myectomy...

          LOL Mary,

          I could use a little Pixie Dust right about now. Where can I get some of that? I hope that your own situation is getting better. I'm here for ya if you ever need to chat

          Jim
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #35
            Re: ah, the joys of the bumps in the road of a myectomy...

            Truthfully, I would have to be crazy if I didn't have second thoughts during some of the darker moments. This is major surgery, and there have been some bad times.
            However, in a few months, I will KNOW how successful this surgery turned out to be. If there ends up being some problems then I will deal.
            Even with a successful Ablation, you will always have question marks. Each visit to the cardiologist would bring on the old fears. I can not imagine spending the rest of my life wondering.
            Even now, each time a new person on these boards post "I'm getting an Ablation", I cringe. Especially if they do not state their age or circumstances. I wish there was a technical way for this website to generate an email back to the new member that says "CALL LISA ASAP" whenever "getting an ablation" is found in the text.
            When those douibts and second thoughts do come around, I just look at some pictures of my kids. If I had still been single I would have probably got an ablation, because there would have been no motivation to get my chest cracked open.
            I did this to return me to my family, for many decades ahead. And if you knew my kids and my wife, you know its worth it.
            Fx

            Comment


            • #36
              Re: ah, the joys of the bumps in the road of a myectomy...

              Sorry Jim,

              But due to cutbacks we no longer have Pixie Dust it is now Pixie Crack not quite the best grade but the guests will never know the difference.


              Mary S.

              Comment


              • #37
                Re: ah, the joys of the bumps in the road of a myectomy...

                Felix

                I did it for my kids and my grandkids and most of all my Husband and i wanted to show my neice she could do it too as i am older than she is but she died about 2 hours before i went to surgery, she also had HOCM she was 35 years old too young, she died in her sleep and left a husband and 4 kids behind i will truly miss her as i use to bounce her on my knee when she was a little girl, i had talked before about her on here and between Lisa and I we were trying to get help for her, but her dieing was meant to be or she would still be here, now she is with her Father which also died of HOCM 16 years ago. I hope everyone has a great night I am still hanging in there going on week 3 since my Myectomy

                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


                • #38
                  Re: ah, the joys of the bumps in the road of a myectomy...

                  Shirley I am so sorry to hear about your niece , what a tragedy. I don't know how it is that some have so many crosses to bare. I can not imagine what it is like to have ones mother die and leaving the children to cope. My heart goes out to you all. You keep doing well . 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


                  • #39
                    Re: ah, the joys of the bumps in the road of a myectomy...

                    I'm very sorry about your loss. I can't even imagine what you were going through just before surgery. It just shows we still have a long way to go on this journey with HCM.

                    Be well,

                    Mary S.

                    Comment


                    • #40
                      Re: ah, the joys of the bumps in the road of a myectomy...

                      Shirley,

                      My heart and prayers go out to you. What a terrible thing HCM can be. I hope you are feeling better every day and will be back doing many things you couldn't do prior to surgery.

                      I am calling Dr. Lever at Cleveland Clinic today to schedule my surgery for most likey next week.

                      Ralph

                      Comment


                      • #41
                        Re: ah, the joys of the bumps in the road of a myectomy...

                        Ralph

                        Good Luck and do what they want you to do that is very important, i will keep you in my prayers, i went by my gut instincts and they told me it was time and the test did also they just confirmed what i already knew, i was just existing not living and i was tired of it, it was going to be all or nothing a year ago i would have said no to surgery that's shows you how fast i went downhill, you will be in my prayers

                        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


                        • #42
                          Re: ah, the joys of the bumps in the road of a myectomy...

                          Figured I would do an update.

                          today was finally a good day. probably the very first. not a great day, but a good one. he woke up in a good mood this morning. Late this
                          afternoon I took him to the farmers market to pick up some food for
                          this week. he still has no appetite, but is eating the high protein diet.

                          we are hoping that tomorrow Felix can go with us to Alyssa's T ball
                          practice. WE shall see.

                          I will also admit that now that I hired help with the kids, i have
                          been less stressed. I am going out tonight with a friend to a st
                          patty's day party.

                          keeping our fingers crossed that good days will outweight bad days.
                          It took 24 days before we had our first really good one

                          oh, one addl thing... felix mentioned that reading and even computer
                          work has been someone hard. he gets bored, but sometimes mentally
                          cannot really think. He has wanted to work on his diary for all of
                          this, but is having trouble--and felix is not one to have trouble writing!
                          Just wanted to state this since I had heard that after being on the heart
                          lung machine it sometimes takes a while for your brain not to be "cloudy"

                          sandy

                          Comment


                          • #43
                            Re: ah, the joys of the bumps in the road of a myectomy...

                            Sandy this is true. With some things it takes a while or a little slower process to gather the thoughts . It was interesting that for new ideas my mind spun in all directions and I wanted to write but often could not write fast enough for my thoughts but if someone asked a question that they thought I should recall the data to, I would stare at them blankly and say "I don't know what you are asking or what you are talking about." The other part was I did not know what I did not remember but would be cognizant that a memory was gone because one of the kids would say " you remember this right?" I still don't know what I don't know , it could not have been too important to me I quess. I know that there was a slight delay then but not now. Things flow well and I am much more creative then before surgery, probably due to more cerebral perfusion. Sometimes at night I can't stop all the ideas I have and wish I could get up and try some on paper. This refers to my paintings. I think Felix will begin to feel better and better it is just going to be slower for him due to those 1st 24 days. He will write again and be back at it soon . He has been through a lot and will need to give himself time. I am glad you are taking time for yourself this is so important as there is so much stress on the caregiver and you know all about that. Have a good time at Alyssa's t-ball. Wow you must be having warm weather. It is still very cooold here. We were teased by some warm weather about a week or so ago. Take Care . 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


                            • #44
                              Re: ah, the joys of the bumps in the road of a myectomy...

                              yes, here in atlanta it is in the 60's. this is normal for march. I remember
                              when I lived in Nashua NH in the late 80's how I could not wait to get
                              out of new england. the winters were just too long for me.

                              it looks like today may also be a good day. I am cautiously optimistic.
                              maybe this is also the week that felix will be able to set up our
                              wireless home network ... not pushing just helpful.

                              I really thank all of you for bearing with us while I did all these posting.
                              It greatly helped me get thru the hard times here. I also hope that
                              this post will be of great service for those coming here in the future.

                              sandy

                              Comment


                              • #45
                                Re: ah, the joys of the bumps in the road of a myectomy...

                                Hi Sandy,
                                You come unload on us any time you feel the need. That’s one of the reasons why we’re here. Of course we’d much rather hear that Felix is having a whole string of excellent days, but any way the cookie crumbles - - here we are.

                                The way you and Pam were talking about memory reminded me of a story. Two women are sitting at a card table when one says to the other, “I know we’ve played cards together every week for over thirty years, but dear, right now I can’t remember your name.” The other woman just sat there and glared. For over three minutes she sat there and glared. Finally she said, “How soon do you need to know?”
                                Burt

                                Comment

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