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Myectomy- July 19, 2005--very scared


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  • Myectomy- July 19, 2005--very scared

    Hello everyone. I wanted to thank all of you for all your support. You guys have given me the strength and courage to get through this. I love you guys!! I have always read these message boards but have never written. I have prayed for each everyone of you. It is now my turn to get the myectomy and Maze procedure for afib... I will be in Boston...NEMC-TUFTS. Dr Maron and Dr Rastegar are my docs...
    Im a 32yrs old with HCOM. I was diagnosed at 24 and had a pacer implanted. My Septal wall=1.9 atria 5.2, gradient 80mmHg at rest.
    I just spoke with Lisa and had no idea I was going to be on a ventilator upon awakening. My surgery is in a couple of days, and Im terrified! I feel like I will panic upon wakening. Im so scared you guys!!!
    What tips can you guys give me for my hospital stay, the pain and breathing tolerance, what I will feel post op, excercise tolerance, weight loss/gain/nutrition, scar/incision. What should I bring with me to the hospital? I spoke with Lisa and she has given me so much info...If there is anything anyone can think of, please let me know...
    Love you guys!!!!

  • #2
    surgery date

    My surgery is scheduled for Tuesday, July 19, 2005.
    What should I expect for the preop visit the day before?


    • #3
      I am glad to see you have joined us here on the message board. I am sure you will find lots of info and support!
      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)


      • #4
        Hena, Welcome to the site. You will be receiving many responses very soon. I want to wish you the best and let you know you will be in my thoughts and prayers. Linda


        • #5

          You i'm sure got some very good advise from Lisa, she has volumes of it but all i can say is try to relax and put yourself into in their hands they are the experts and know we are all praying for you and just think how good you will feel having this behind you

          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


          • #6
            Hi Hena,

            Well, I can tell you that the worst part of the procedure is the time leading up to it. Don't think about the waking up part too much. The truth is it is not as bad as you are thinking it is. I was terrified of that and when the time came I was so doped up and looped I didn't even care. I had my best friend sitting there when I woke up and I was more worried my hair looked bad, than that ventilator in my mouth.

            The day before you will just do blood testing and they will tell you what to expect. The morning of is tense, but for me it was such a relief to get to that point you feel very ready to move forward. There is a little poking and prodding right before, getting IV's and all set up, but once that is done it is a short time to getting under way. Even when they are getting you ready, you are given sedatives so it is really hard to be tense or nervous.

            I was the first one they did at NEMC and I was more worried about that part than the rest. I made it and am at 2 years this month. They have done many more since then and Dr. Rastigar is a very highly competent surgeon. The nurses are all great and you will be very well taken care of. Best wishes and hope you have a speedy recovery.

            NEMC's (Boston) First Myectomy 7-22-2003


            • #7
              Many of us here know exactly how you are feeling! As everyone will tell you-we were all "freaked out" over the vent-but it's worse in your mind than the reality. By the time you wake up (after surgery), you will be close to being extubated & you will be heavily medicated. I just said to myself " pretend you are breathing slowly, in your mind & stay calm-it worked!
              My best suggestion is to have someone give the CCU RN a lip moisturizer (Chap Stick is OK) & ask the Staff not to rub ice/water on your lips-use the lip moisturizer. It's kind of icky when the water drips into your mouth & your lips will be very dry.
              Take a couple pair of PJ bottoms, slippers, a family picture (put by your bed after the CCU) a magazine.
              It will take awhile for your appetiteto return.
              Others will give you a more complete picture, but I really wanted to respond to your vent issue, because we all have that issue.
              Think positively & remember you will be feeling much better!
              Don't forget your Smile .
              My thoughts & prayers are with you.


              • #8
                Hi Hena,

                (Honestly, I don't mean to make you feel worse, but....)

                Yep, I freaked out when I woke up on the ventilator -- but -- there are nurses around you and they will calm you down. You will not be alone. And you will be medicated.

                And the more calm you are, the sooner they can take the tube out.
                It is no fun, but it is doable. You are stronger than you think. You will probably want ice chips after surgery. They were the best things I ever ate, to this day.

                As far as recovery.... I won't lie to you, it hurts, but you will have pain meds to help with that.

                Use the little blow-pipe they give you often, I think it was ten puffs every hour (I'm not exactly sure if that is number is correct).
                And Ronnie mentioned chapstick, that was a life-saver for my lips. I had it next to my bed during my entire recovery.

                I love music, mostly classic rock and Yanni. So I brought a portable CD player with me that has a radio in it too. And I brought some CD's with me. It helped distract me from some of the discomfort.

                Hold your pillow against your chest to cough. And cough up as much as you can when you can (sorry gross).

                I found that open back slippers are better than full back slippers.
                Also, I brought comfortable clothes with me, easy to put on and take off.

                I know sweetie, it is scary. My insides were shaking. But alot of people have gone through this and have done very well. (I am one of them.)

                You are with experts. You are in really great hands and will receive the best of care.

                Is there anyone who can update us when you have your surgery?
                I am hoping to hear how you are doing.
                I am praying for you dear, you are going to do great.

                Huge Hugs,
                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.


                • #9
                  Ronnie is absolutely right. I would bet every single person who has done the myectomy and woke up on a vent would agree that the worst thing is your imagination of the event prior. I would also bet that most if not all would say it was not what they expected. It is hard, but try not to think about it and by the time you are feeling coherent you will already be off of it and you will say, "that wasn't as bad as I imagined it to be".
                  NEMC's (Boston) First Myectomy 7-22-2003


                  • #10
                    Hi Hena,

                    I was the third myectomy done at NEMC, right behind Doug. He and everyone is right. We were all stressed out about the vent. The doctors and nurses are very prepared for our fears and do not take our experiences as old hat . For each of us it is the first and unknown experience and we do not have anything to draw on as a reference , this is why it is so scarey. Doug is right you should be pretty looped and in sort of a limbo zone and time will just go by. Remember when you wake up. "YEAH it is all behind me celebrate that thought. " Each tick of the clock each movement of the hands on the clock will mean the time is approaching closer to when the vent comes out. I know you have had to wait for things before so what ever works. If you happen to be awake focus away from it , bake cakes in your mind , plant flowers, hum a song in your head, guaranteed you will soon be a sleep again. Each time you awaken think of another thought that you may have planned to keep your focus away from the vent. When it is out, it is behind you., Celebrate that event also . We will all be cheering you on in spirit so remember that thought. Remember that the 1st 3-4 days may be crappy but by day 3 for me , just like Dr. Maron promised, it all turned around.

                    Do not be hesitant to ask questions and ask your nurse when each apparatus will likely be removed. this gives you a strong sence of the days and events . Keep track of your pain med schedule and do take it regularly. They wait for you to ask for it. You will feel you need less when the time comes and you can start getting the tylenol in between the big pain killers and stretching it a bit as you feel you tolerate it.

                    Eve was correct , the ice chips will give you much relief from the soar in your throat that many get from the vent tube.
                    I wore my Nike slip on sandals and they worked real well . They are velcro closure and did allow for the adjustment post surgery when I had 18 pounds of fluid suddenly on my body and very much in my feet and legs. If you have short hair it will not be so bad to go til your first shower. I used a face cloth with shampoo on it washed my hair as best I could -one handedly and then rinsed and rinsed and rinced using a face cloth over and over. Took me forever but heck I had time on my hands. IT FELT SO GOOD Drink lots of water, it helps flush the edema away and walk as much as possible as soon a you can tolerate it.

                    That is all I can think of for now. PHEW!!! Oh yeah , bring a pre-paid phone card. The phone charges were so big the first time I was there and did not have the card.

                    Finally we are all here. If you need to talk while in the hospital or anything.

                    It will go well , I am sure. We will all be here to help you get through this.

                    My Best,

                    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


                    • #11
                      Hi Hena
                      I can agree with the advice you have been given.

                      I had my first myectomy at the age of 20 (many years ago) & I was never told about the ventalator. When I awoke, I was scared to death. The nurses explained why I needed it which made me feel more at ease. I walked out of ICU and told the nurses I would go through it again if needed.

                      There are many times I faint and get close to death. I am taken to the hospital (or if someone is nearby that knows CPR, I am given that), and then the ventalator is inserted in order for me to breath.

                      It is never in very long, but I tense up and that makes it worse. It will be a new experience for you, but once you come to terms with it, try and relax. I know you are probably thinking "Is she nuts!", but it does work.

                      I hope there is someone that can keep us updated as to you progress.

                      I will include you in my prayers.

                      Take care and I KNOW you will be just fine.
                      Well, it just so happened that I had to have another myectomy in 2000. I went through the process again.


                      • #12

                        Hena - its a great thing that you are having done!!. I am 4.5 weeks after it and have not felt as good as far back as i can remember. I went for a 2 hour walk yeserday with my dog in the woods - hills .. woods, unpaved roads.. Last time i did that i thought i would need an oxygen tank. I fely great yesterday. !!! i am so delighted that i had it done.

                        As everyone else has said - you will be fine and don't worry. It is really not as bad as you think.

                        try to keep us posted



                        • #13
                          Hi Hena,

                          More support here. I am almost 6 weeks post myecotmy at Mayo and I know you will be so happy that you took this step. You are doing the right thing by getting information from everyone. I did the same thing and felt like I knew exactly what was going to happen through all of it - that really helped. The breathing tube for me was not any big deal. Like Doug said you are doped up, so it was a bit of a blur. Right when I woke up the nurses were right there talking to me letting me know what was going on. It was very reassuring.

                          I'm in agreement with everyone about the ice chips. WOW those little frozen H2O's were YUMMY!!!

                          I took a portable CD player for pre-op (when they get you ready for surgery) and it really helped me relax. They also gave me something, I think maybe Valium and then I was like WHOOPEE lets go to the O.R.

                          You will have pain after surgery, but everyone is very good at making sure it is very minimal. The nurses at Mayo were constantly asking how my pain was. If you are in any pain make sure you let them know because if you let it go too far it is harder to control. It's no problem to be a bit dopey for a few days (and not in pain)

                          After a few days you will really start to feel better especially when you can get cleaned up and the first shower is as close to orgasm as you can get (is that okay to say?)

                          Make sure you are using the breathing exerciser every hour - It will make a huge difference because your lungs may feel a little tight post surgery.

                          Eating in the hospital was not great for me. I didn't have any appetite but I did eat a ton of these little sorbet / sherbet cups. and drank a lot of juice & diet soda. I didn't have too much problem eating when I got home. You will definitely get your appetite back.

                          Overall I had a very good experience with everything at The Mayo Clinic and I am sure you will have the same in Boston. The nursing staff was like a bunch of little angels. I think that's it. Let us know if you have any more questions. I know you will do great! You will be in my thoughts and prayers.

                          Best wishes,

                          41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005


                          • #14
                            Hena, I go in the day before you and I really feel ready due to everyone here and the great people at cleveland. Pre-op is no big deal day before, meet with nurse, anesthesiologist, surgeon, etc. you'll watch a movie, at least I did at cleveland, you'll have plenty of time to ask and all questions. It's meant to reduce fears rather than increase anxiety. I am someone that likes knowledge and with that I am calm.

                            I'm not looking forward to the vent either, but I will you use guided imagery as others have explained (think of myself doing a favorite thing, laying on beach, etc) and I hope this will help. I have a strong will, so if I tell myself to relax I think I can do it, esp when I know the more I can relax the sooner it will be all over.

                            I don't look forward to monday but yet again I do. I'm ready to feel better!!

                            So, there are three of us, you, connie and me. 3 is always a good number. i don't know if you're a believer, but remember when 2 or 3 are gathered, Jesus is right there, too!!

                            Best of luck, Laura
                            Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.


                            • #15

                              Just wanted to send my best wishes to you for Tuesday.

                              I'm sure that you will do great, and that we'll be hearing from you soon.