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headed to cleveland clinic aug 2nd for myectomy

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  • headed to cleveland clinic aug 2nd for myectomy

    Finally I am going to have treatment! I feel very confident that I am having the right procedure at the right institution and I owe a big thank you to everyone on the forum. I have regularly visited the site over the past 6 months and soaked up everyone elses experience with myectomy. Knowing what to expect makes me feel much less anxious. Special thanks to Felix and Jim for such detailed accounts of their myectomy experience. I will talk to you soon.

  • #2
    Re: headed to cleveland clinic aug 2nd for myectomy

    I am sure you have a ton on your mind... I am sure you have done all of your studing and reading by now.

    Please remember one thing - Do not have too many expectations - you may find yourself either let down or nervous that you are ahead of your thoughts. Stay positive and keep working on feeling better each day.

    You will be in my 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


    • #3
      Re: headed to cleveland clinic aug 2nd for myectomy

      Hi Keith
      I'm glad the information you got here was of help to you. Many people, (including myself - I had 2 myectomies) have been in your shoes but with less information. You will be in my prayers for a comfortable and speedy recovery. Let us know how everything goes when you're feeling up to it.
      Esther

      Comment


      • #4
        Re: headed to cleveland clinic aug 2nd for myectomy

        Keith,

        Good luck at Cleveland. Our thoughts are with you.

        HERES TO A SPEEDY & UNEVENTFUL RECOVERY

        I'll be looking forward to reading your postings in the next few weeks. I am scheduled for my Myectomy at Cleveland Clinic on August 31st. I can relate to what you say. I just found this site a few weeks ago (I'm sure you have read my postings). I feel the same comfort going in as you, thanks to all the suport here at HCMA.

        Stuart
        Cleveland Myectomy Club
        August 31, 2004

        Comment


        • #5
          Re: headed to cleveland clinic aug 2nd for myectomy

          Keith

          I had my myectomy done on May 17 at the Cleveland Clinic. I am amazed at well I feel. I am walking miles a day. Working up a good sweat at my rehab 3 times a week. I am amazed at the difference of how I feel as compared to 4 months ago. I am really lucky that I have had no setbacks and I have a family that is the best.

          I know you are going to the best place on the planet to have your procedure done. I can't think of anything negative to say about CC, ( not counting the food ). I guess I just didn't feel like eating when I was there.

          Remember two things; 1) get up and walk as much as possible, even when you don't feel like it. 2) get up and go to the bathroom as much as possible, even when you don't feel like it.

          Stay positive and be strong and I know you will be just fine...


          Tigger1
          " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

          Comment


          • #6
            Re: headed to cleveland clinic aug 2nd for myectomy

            Keith

            I had my myectomy done on May 17 at the Cleveland Clinic. I am amazed at well I feel. I am walking miles a day. Working up a good sweat at my rehab 3 times a week. I am amazed at the difference of how I feel as compared to 4 months ago. I am really lucky that I have had no setbacks and I have a family that is the best.

            I know you are going to the best place on the planet to have your procedure done. I can't think of anything negative to say about CC, ( not counting the food ). I guess I just didn't feel like eating when I was there.

            Remember two things; 1) get up and walk as much as possible, even when you don't feel like it. 2) get up and go to the bathroom as much as possible, even when you don't feel like it.

            Stay positive and be strong and I know you will be just fine...


            Tigger1
            " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

            Comment


            • #7
              Re: headed to cleveland clinic aug 2nd for myectomy

              Sorry about the repeat...
              " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

              Comment


              • #8
                Re: headed to cleveland clinic aug 2nd for myectomy

                How soon after the surgery were you up and walking? How long after surgery did the chest tube come out? Do you remember them taking out the intubation tube? Any afib? I guess that's pretty much all of my fears Did you have a murmur prior to surgery? Do you still have a murmur? Did cleveland set you up with rehab in your local area? Any suggestions on things I might want to bring to make the stay more comfortable? Thanks

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                • #9
                  Re: headed to cleveland clinic aug 2nd for myectomy

                  I'll be thinking about you on Monday.
                  Just got back from a 4 mile hike and now I've got a full day of chores ahead of me.
                  I have a re-evaluation up at New England Medical on Friday.
                  Fx

                  Comment


                  • #10
                    Re: headed to cleveland clinic aug 2nd for myectomy

                    Sounds like myectomy worked pretty well for you felix. That's very encouraging. Looking forward to biking and hiking with my family also offsets my anxiousness. Friday the 6th I am scheduled for surgery.

                    Comment


                    • #11
                      Re: headed to cleveland clinic aug 2nd for myectomy

                      Hi Keith (and Stuart too),

                      Congrats to both of you on your upcoming surgeries!

                      This is going to turn into a very long post that i was initially just going to PM to you, but then again the info might prove useful to others as well...

                      You have pretty much stated exactly the same fears that i had going into my own myectomy. Not to worry... it's a whole lot easier to get through than what's currently going through your head! I assume that you'll be staying at the Cleveland Clinic Guesthouse since most of us find it to be the most affordable and convenient. If you are... feel free to PM me and i'll give ya some specific details concerning your stay there.

                      Your Pre-op Appointments: Be prepared to do some waiting at these. I waited several hours for a few of my appointments, and five hours for my catheterization (they'll get you in and start your IV pretty quickly, but then you'll be sent back out to the lobby to wait your turn). Hopefully i was the exception here and you won't have any waiting at all, but you should be prepared just in case. Don't let this get you down. The folks you are going to see are the best of the best... and they are in high demand.

                      Pack a Walkman: You will be given relaxation tapes to listen to. This seemed a bit hokey to me at first, but they were free so i tried them out anyway. They have them on CD and cassette (they'll give you both) and they're yours to keep. If that's not your thing, bring your own music or books on tape to listen to. They'll let you use it right up until they take you into surgery and give it back to you pretty soon afterwards. I have a sneaking suspicion that my docs were listening to my ABBA cd during my surgery... woo hoo! Hey, did i mention that i was a dork? LOL. And don't forget the extra batteries!

                      After The Surgery: I woke up with the following items hanging out of me... the ventilator tube, three chest tubes, two copper wires attached to the heart, one arterial line, one intravenous line, the heart monitor leads, and of course the dreaded pee pee tube. (In actuality, I call it something very different, but this is after all a family site.) These will all start to come out in short order so don't be alarmed.

                      Ventilator Tube: Mine was in for several hours after i woke up. This was tough for me because i made it tough. I didn't expect it to still be there when i woke up, so i became alarmed and started thrashing about unnecessarily. It's actually a very small tube... not the garden hose i imagined it would be. It will feel kinda like you have a lump in your throat that you just can't swallow down. Don't make this a bigger deal than it is... they're not going to let you choke to death in the ICU!

                      They'll offer you back your walkman at this point... so relax, listen to your music, and take deep breaths. It's a little tough with a tube down your throat, but it will help you to stay calm, and the deep breathing will get you off that ventilator quicker. As soon as you are able to demonstrate your lung capacity (cough, inhale deeply, and blow back out through the tube when they ask you to) the ventilator will come off in no time. Follow their instructions and do not fight them... those ICU nurses are some pretty tough broads.

                      Chest Tubes: The chest tubes were nothing at all for me. A little uncomfortable, yes... but not painful. Mine were removed the second day after surgery but i think it varies. Everyone told me to be prepared for the big moment when they yanked them out, but honestly it wasn't that bad. It felt more wierd and squishy than anything else, and it only takes a few seconds to get each one out regardless. They will give you painkillers beforehand.

                      Foley Catheter: If you've never had one before... trust me, the thought of it is much, much worse than the actual experience of it. After a while you actually kinda start to be thankful for it and think it's pretty cool. 'Hey everybody, look i can pee while laying on my back!'

                      Wiring: The copper wires hanging out of your chest are just some pre-wiring in case you need the old Dr. Frankenstein treatment. I didn't have any A-Fib issues at all so they were never used, but everyone gets them as a free added bonus. You hardly even know that they are there.

                      Pain Management: You may select from a wonderful variety of pain medications. Morphine never quite does the trick for me, not to mention making me stare at my various body parts for extended periods of time with the utmost fascination. I always get off the morphine as quickly as possible and ask for percocet. In addition, you may request a sleeping pill at bedtime. They may not tell you about this however... my roommate and i only found out about the elusive sleeping pill by eavesdropping on the nurses. By all means request it in addition to your other pain medications... you will have quite the delightful experience and come back to thank ol' Jimmyboy afterwards.

                      You'll be amazed at how quickly you are up and walking around. This will likely be the day after surgery, but i have heard that some patients are even up and about the same day. There are internet terminals on every floor, so get the heck out of bed and post us a message to tell us how you are doing! It'll impress the girls.

                      There were days when i just didn't want to get out of bed, but let me assure you that every single time, i felt much better after i did. It helps a lot in alleviating the pain and discomfort from surgery. Look at it this way... they'll take out that Foley Catheter (please see above) as soon as you start walking and are able to show them you can pee like a big boy. Mine came out right after my first full lap around the ward.

                      Use the little breathing gadget they give you... it really does help and will get you off of the supplemental oxygen faster. I forget the exact name of the thing, but it sounds something like the Illudium Q-38 Explosive Space Modulator.

                      The Trip Home: The trip home wasn't bad at all... it was five hours by car, plus stops. I was actually feeling good enough that we had a nice long lunch on the way home, stopped for ice cream, and even did some shopping along the way. I chose to have my recovery on my own at my apartment, and did just fine... but in retrospect it really would have been nice to have someone around to help with shopping and stuff.

                      Prescriptions: Get these filled before leaving Cleveland... your pharmacy at home probably won't fill out-of-state prescriptions. You may have to pay cash like I did since it was out of my insurance network, but i just sent in the receipts afterwards and was reimbursed.

                      Heart Murmur: I had a whopper of a murmur going into surgery with a gradient of 190 (by catheterization), but now my docs tell me they can't even hear one at all. Prior to myectomy, interns used to love listening to my heart because so many of them had not been exposed to HCM or what it sounds like. Now they're not interested in me at all! Go figure. To be honest, i kinda miss the attention.

                      Rehab: The docs in Cleveland will write your orders for cardiac rehab, however in my case my local doc had to re-write these for me. This had to do with Cleveland Clinic being out of my insurance network, but it was a simple matter for my PCP to write new orders. I'm not sure why this was such a big issue. Since my insurance company authorized Cleveland to do the surgery... one would think they should also accept any orders or prescriptions they wrote there. Who knows how these people think?

                      The folks in Cleveland are all top-notch, especially the nurses on the cardiac floor. And in all my experience, those people are the best with needles i have yet to experience. When they needed blood, they were in and out of my arm so effortlessly i didn't even know what was happening. Even the IV's were painless going in. I'm a big baby with needles, so this was a real plus for me. They're all very, very professional.

                      Hope this has been of some benefit. If you find yourself getting nervous or feeling sorry for yourself... just take a look at little Dylan. Five years old, he just went through exactly the same thing you are about to (ventilator tube and all), and the kid came out smiling! Be sure to check out the 'view photos' option at the top of the page. It'll make ya feel a lot better:

                      http://www.caringbridge.org/wi/dylan/

                      Good luck, and be sure to keep us posted!

                      Jim

                      (This post has been edited for spelling, content, and because i'm just plain odd.)

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

                      Comment


                      • #12
                        Re: headed to cleveland clinic aug 2nd for myectomy

                        Jim,

                        Bravo on such a wonderful summary!

                        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


                        • #13
                          Re: headed to cleveland clinic aug 2nd for myectomy

                          Take along some PJ bottoms or some lounge pants or gym shorts. I used pants and shorts. Sweat socks and slippers also came in handy.

                          I had trouble sleeping in the bed so I asked if they could bring me a recliner to sleep in. It also came in handy during the day. They don't have many of these chairs but if you ask real nice they will find one for you.

                          I brought along my own pillow from home. Their pillows really sucked, oops can I say that.

                          They told me I could eat almost anything I wanted. Their food was pretty much tasteless. I ate Pizza Hut, Subway and McDonalds. They are all on the first floor. McDonalds fruit and yogurt cups are great for breakfast. They gave me lots of fruit when I asked for it.

                          I sat alot out in the sun rooms talking to my family and looking out the windows. Don't forget to walk as much as you can.

                          Hope this helps you...

                          Tigger1
                          " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                          Comment


                          • #14
                            Re: headed to cleveland clinic aug 2nd for myectomy

                            Tigger and Jim,
                            That is exactly the kind of information that makes me feel so much better. Thanks. Not only informative but funny. My wife and I were crying laughing in some parts. She is a nurse and the part about "the elusive sleeping pill" struck a chord.

                            I will be eager to get up after the surgery and communicate with everyone. Knowing me, I will have another long list of questions.

                            I noticed that you said it was tough to get time on a computer. Is it possible to get a connection if you bring a laptop?

                            How many days were you in the hospital? Did you stay in the hospital the night prior to surgery?

                            About how many hours did the surgery take from start to finish?

                            Comment


                            • #15
                              Re: headed to cleveland clinic aug 2nd for myectomy

                              Keith,

                              You probably don't want to fool around with bringing a laptop and all the accessories with you. I thought about that too, but ended up being very glad that i didn't. It's just extra 'stuff' to deal with and for your family to carry around for you. Besides... you should use the fact that the internet terminal is down the hall to get your butt out of that friggin' bed and post to us as quickly as possible! I posted to the forum two days after surgery... let's see if you can beat that, buddy. (How's that for incentive?) The gauntlet has been thrown down!

                              You can pay extra and get internet access from your hospital room but heck that's no fun. We all want to hear from you when you are up, walking and mobile. No cheating now... we'll know if you do!

                              You will probably be in the hospital for about five days. Believe it or not, by this time you will actually be getting quite bored with the whole scene and itching to get out. If there are minor complications you might be invited to stay longer, but don't fret... they want to get rid of you about as much as you want to get out of there! LoL.

                              Seriously though Keith, we all sincerely wish you the smoothest of surgeries and the quickest recovery possible. Be sure to give your wife the username and password for your HCMA account, or have her setup a new one for herself. We want to hear from her about how you are doing throughout your myectomy and where you are at in your recovery!

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

                              Comment

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