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Surgery scheduled for August 30 at Cleaveland


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  • Surgery scheduled for August 30 at Cleaveland

    Hi all. I have enjoyed reading all of your postings over the summer and even posted once myself way back in May but after my visit to Cleveland Clinic in June, and my meetings with the docs, I am flying back up August 27th to get ready for my surgery on the 30th. And, needless to say, I am not sleeping very well at night! I am worried about waking up on a ventilator, I am worried about what happens if they get in there and have to replace the valve (I am already immuniosuppresssed so they don't know how my body would react to that.) I am worried about the pain afterwards and how long it will take me to get home to Florida to my kids. (8 and 10). I am hoping to be home 2 weeks after I get there. (I know that it could be shorter but I don't want to get my hopes up and be disappointed.)
    I would love to hear any POSITIVE stories about your experiences as well as any suggestions that you have about what to bring with me from home, what to ask for when I get there, etc. (I know about the pillow from home and comfy clothes.) Any thing that any of you wish you had had or had thought of OR had asked before the surgery??? Any thoughts on how o calm my fears until then? (I am not crazed by them but definately have that lump in my throat when I think about going and trouble falling asleep at night.) Any tricks for a faster recovery? What did you learn that I can learn from you?
    I would love to hear from patients as well as their wives or husbands. Tell me about your experience both in the hospital and when you got home. But again, I only want to hear about the positive things UNLESS there is something that I can do differently to make it better.
    I am so looking forward to getting back to my life, exercising again and just plain feeling better in my own skin.
    Thank you for any help or comments or input you have. I really appreciate it!

  • #2
    Re: Surgery scheduled for August 30 at Cleveland

    Hi Deb,

    I am leaving the day after tomorrow to go have a myectomy at Mayo on Friday. I will be happy to share my experiences with you afterward, but right now, I would suggest that you go back and read all of the archives on this board, specifically in the myectomy section. If you go back to the beginning of time, you will find posts on just about everything you have asked about.

    You can also search on particular subjects, like packing lists, etc.

    Right now, I have to say that I am not really nervous. I am just sad and worried about my little boy, who is only 4 1/2 and who has never been away from both mommy and daddy at the same time. Anyway, I am telling myself that I am doing this for his best interest in the long run, and so that is how I am getting through.

    As your date gets closer, and mine is past, I am sure I can give you better advice. For now, hang in there....
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


    • #3
      Re: Surgery scheduled for August 30 at Cleveland

      Hi Deb,

      I had my myectomy at CCF 4 years ago this month. Although you likely know this already it's still nice to hear again I think, your concerns and anxiety over the surgery are perfectly normal!

      Re: waking up on the vent - here's my positive experience: following both my myectomy and another procedure I had done a few months after it, I woke up both times without a vent!

      Re: pain afterwards - pain management/alleviation is an important focus of the nurses and doctors for you after surgery so that you recover not only comfortably but quickly. Be assured that if you need it following heart surgery (and I stress the word 'if') the nurses have the 'good stuff' ready to use and it acts quickly. (I asked for pain meds in CICU and as soon as the meds entered my bloodstream I felt it!). Then, after I was home from the hospital, w/n a week I was really down to taking just Tylenol when I needed it.

      You will do great!

      Cynaburst - best wishes to you as well as you travel for you surgery!

      P.S. Packing for surgery ideas, etc - I brought with me shorts/boxer shorts that I was comfortable wearing underneath my hospital gown along with a robe. CD/MP3 player/IPod is also great so that you can listen to what you enjoy without being disturbed. You might consider ear plugs so you can rest comfortably despite any noise at night. If you are in a room alone, or with an agreeable roommate, (this is once you have left ICU) you can ask the nurse or aide to put tape over the latch of the door so it doesn't SLAM everytime they go in/out and then you can have the door shut at night so the room is darkened.

      Lynn Stewart
      HOCM 4/2002
      Cleveland Myectomy Crew 8/2002


      • #4
        Re: Surgery scheduled for August 30 at Cleveland

        Hi, I'm Martha and I'm Tigger1's wife. As someone who has cared for TWO people with HCM (Tigger's Mom had it also) let me say THANK GOD FOR THE CLEVELAND CLINIC. The difference in treatment and quality of life issues are SO MUCH better now than they were just 20 years ago when his mom was diagnosed. And having the HCMA to turn to also is of great benefit. Your husband should try to stay at one of the hotels on the CC campus, it was very convenient and much less stressful to be close by... although it was not cheap. If you can afford it, it is definitely worth it. There is a Rite-Aid store located next to the hotel north of the Clinic. It has things you can pick up if you need them. There is not much in the way of places to eat, CC itself has a so-so cafeteria and I think they tried to get rid of the McDonald's they had in the building. There is a Chicago deli located in the CC Guesthouse hotel...it has good basic food for breakfast, lunch, and supper. The patient food at the
        CC is frozen Stouffer entrees, YUK! If you want other food, if you are not restricted (Tigger was not), other food can be brought in. We brought frozen smoothies and milkshakes the first few days after the surgery just to get something in his stomach. It hurts after the surgery (sorry can't put positive spin on it) so take your pain medicine even when you get home. It will make recovery easier. After surgery the most important thing is getting up and moving... it is also the hardest. Your husband (and eventually you) should go to the meetings and classes they have for heart patients, some of the info is helpful. I had one of the nurse practitioners at one of these meetings tell me to plan on going back to work as soon as we arrived back home. Not a good idea.. we BOTH needed time to rest and get our act together. Tigger was in for 10 days for his surgery, some people are less, some are more.
        The hardest part as the non-patient was the intensive care unit immediately following the surgery... you are limited to 5(?) minutes an hour and really I felt the visit to be intrusive to the patient. You have a nurse assigned to watch you and only you and the time should be used to get you out of the ICU asap. I'm not saying your husband should not visit you but they really are working to get you out of there, I did not visit every hour on the hour.
        IMPORTANT: your husband should get out and take walks (they have a nice courtyard) everyday. It helps with the stress.
        They have internet access on the floors at the hospital so you both can communicate with whoever you want. Tigger used this after a few days and helped to keep the phone calls down to a minimum.
        Finally, the neighborhood surrounding the Clinic is not the safest, they have campus police all over but it still is a good idea to be aware.
        Any questions or concerns , private message Tigger1 and he will happy to calm your fears. He had trouble sleeping after the surgery, the doctors gave him an anti-anxiety drug to use for a few weeks. It helped.
        " Real Courage Is Being Scared To Death But Saddling-Up Anyway "


        • #5
          Re: Surgery scheduled for August 30 at Cleveland

          If I may make a suggestion for all, my sister had to have open heart surgery more than once. The first time they gave her a pillow to hold on to when she coughed or moved to help alleviate the pain. This did not help her much. When she was to go in for her second procedure 7 months later, we did some research on options. We found an item called Hearthugger. It is more like a wrap you wear around your chest and hold it together when you cough or need support when moving. She said this made her pain level drop considerably! She made sure it was there on her 3rd time! She needs surgery again and if she opts for it, it will be there again! If your going to have your chest opened, this would be a good thing to look into. I found it at www.hearthugger.com. I know how painful it can be and I hope this info helps someone. It was quite inexpensive and well worth it. Good luck to all and a speedy recovery!
          Life is short, eat dessert first!


          • #6
            Re: Surgery scheduled for August 30 at Cleveland


            I had a myectomy back in February of this year, and I can't they get many cases which are more successful. I was probably a little strange in my approach to the surgery, but I really didn't worry all that much. I knew that a) I was going to one of the best places possible and having one of the best surgeons possible perform the surgery (as are you), and b) that if its my time to go, there's not much I'm going to do about it. In fact, in that regard, there was more burden on my family than on me. In any case, any worries I had were ill-founded, as everything came out great. I was at the hospital by 9, being wheeled into the OR a little after noon, and was waking up in the ICU by 9 that night. The "tube" was a little uncomfortable, but I was conscious of it for less than an hour. By 11 the next morning, I was moved to the step-down/cardiac floor, and 3 days later they were kicking me out. The pain was much less than I thought it was going to be, and I was quickly down to just Tylenol for its management. I can honestly say that the worst part for me was the stiff/sore neck and back in the weeks afterwards. But once I figued out that ibuprofin was better for that pain than Tylenol, it too was short-lived.

            Anyway, I hope your procedure goes as well as mine did (and I'm sure it will). Please feel free to PM me if you have any questions or want to talk more.

            husband, father of 3, dx in 10/05 at the age of 36, Mayo myectomy club member as of 2/24/06


            • #7
              Re: My myectomy blog page

              Hi. I wrote a post the other day asking for any input or suggestions from anyone who has had a myectomy (ie. what to take, pack, how to prepare, etc.) but heard from only one person in response. What kind of responses have you gotten and what kinds of things are you doing to get ready? I leave for Cleveland for my myectomy on the 27ths of this month.
              Thanks for any advice you can pass on!
              PS. If anyone reading this blog would like to give me the benefit of their experience, I would love that too,


              • #8
                Re: Surgery scheduled for August 30 at Cleveland

                I didn't see your post cuz it was located on the general discussion board(non-health board), I think, & I usually have been checking the myectomy board!

                I just had mine in June at Mayo and want to say that I had worried about the respirator, but should have had no fears. I was mostly not conscious in the ICU and really remember nothing of it! The spirometer breathing machine was hard for me and I wish I had practiced on one before the surgery-you might ask, a nurse said they used to establish a baseline for this. My recovery has taken longer than I expected, but I automatically have no longer felt the chest heaviness after eating.

                I was also worried about my valve, I had severe leakage, but I now have none! My gradient used to be over 100- resting, it's been around 40, but I have my recheck at Mayo this month.

                It's a long process, but remember to advocate for yourself. I suffered through 2 weeks of fever in my 2nd month and went to see all of these people: general practitioner, cardio's PA, and finally saw my local cardio. Everyone said it's natural after heart surgery, and how well I was doing, they could find no infections from the tests, until the cardio sent me for another chest x-ray and saw all the fluid still there. It was causing the fever and was drained the next day- 3+ lbs. of it! I've been improving every day since and so much more rapidly. The communication between the doctors and the results at my local hospital was poor, though. Use me as an example if needed to push your case if you believe something is wrong!

                Also once you're back home and feeling better, don't overdo it. I recommend going to your local hospital and asking about cardiac rehab., they have really helped me to know how much to push myself and the monitoring they do during your exercise is great.

                As far as the hospital goes, my MP3 music headphones accompanied me to the surgery. I recorded the most relaxing music and it was nice to drown out the other noises just waiting for surgery. Having a robe of my own was nice, because the hallways were cold-air conditioning and they get you out and walking right away.

                When you get home, have someone cook for you or ask for friends to give you food instead of flowers! That's my idea, I didn't want to be anywhere near the kitchen and my appetite was not there. My neighbor brought over brownies, though and those perked me up a little. Also some friends got me a gift certificate to LetsDish, where they will make you frozen meals and then my husband just got to put them in the oven! It has been great.

                Don't be afraid to tell people that you're not up to talking on the phone. I got out of breathe a lot and resorted to e-mail. Also we set up a Carepages.com website where my husband would post updates. Very easy and had so many posts that I saw before, in the hospital and after. It was very inspiring to know that many wishes were being sent your way. Much better than the phone ringing in the hospital also.

                Please don't hesitate to PM me and I'd be glad to talk on the phone or personal e-mail, cuz I'm sure there is more I'm forgetting. All my best thoughts,
                Diagnosed HOCM 2002, ICD 2002, Myectomy 6/1/06 at Mayo


                • #9
                  Re: Surgery scheduled for August 30 at Cleaveland

                  Deb ,

                  I moved your post and merged it with your other posts putting them together in one thread in this forum . I think now you will see the reponses you did get and others will see and respond also.

                  If you have more specific questions that are not getting answered please ask more.

                  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


                  • #10
                    Re: Surgery scheduled for August 30 at Cleaveland

                    Thanks all for writing your wonderfully helpful responses to my "cries for help". I especially like the suggestion about the "corset" around the check area. I know that after my k/p transplant, it felt so great to have a corset type band around my abdomen. They actually put it around me that 1st night and I rremember how good it felt to have the incision and entire area supported. I wore it for weeks. (and this from someone who buys underwear a size too big!)
                    I have gotten my IPOD out and plan on downloading soothing music. (Again, another great idea to pass the time as I wait to be wheeled in to surgery) Notice that i said that I had to "get it out" as it has been so long since I have used it to exercise that I had to go find it.
                    I haven't been so great about planning in case I am away from home for longer than 2 weeks. I have my kids covered (my husband will be here except for the 4 days he is with me in Cleveland and my mom, sister and friend will be with me there over the 2 weeks. (That included the days of pre-tests and the surgery date so I've given myself 10 days after the surgery to fly home. Did anyone have to be away much longer? How much notice did you get about going home? Were you able to book flights w/o any problem?(Ah....the stupid things we worry about.)
                    I have also set up a website through www.thestatus.com (which Cleveland recommended as did Tigger's wife and I have to admit that seeing and reading the e-mails and supportive posts is really uplifting.
                    Again, keep the advice coming. It is really helpful as the date of departure gets closer.


                    • #11
                      Re: Surgery scheduled for August 30 at Cleaveland


                      I had my surgery in January of 06. The question about flying back is one I had to deal with. My orginal surgery date was Dec 28th 05 but I caught some weird infection that gave me a temperature so it was postponed. Since the recovery time after surgery was unknown I really did not know when I could fly into a small airport in Iowa.

                      The hospital people will want you to stay a day in the Cleveland area just to make sure everything is ok. This will make it very hard to say that "everybody is here for 7 days so I will be here for 7 days" cause it just does not work that way. You may need to stay for a little while longer or if you are doing great they may let you leave earlier.

                      I ended up getting a 1 way flight from Cleveland to my destination a day before I was actually flying out. I thought I would have to pay a lot of money for this but it was really just the normal fare. I checked on travelocity and other web sites to find out if I could really do this. I do not know if Southwest Airlines flies where you are going but it is worth checking it out.

                      Since I made a one way almost last minute flight I was flagged as a security risk. The TSA people in Cleveland that I dealt with were very good in that they see this all the time. Since I was in a wheel chair and could walk they did a pat down search as well as a wand search. The agent asked what he could not touch and I flat out told him if he hit my scar on my chest I would either kick him or drop to the ground crying. We had no problem. I would also suggest taking somebody with you when you are traveling. I probably could have done it all myself, but I am glad I did not have to.

                      My myectomy recovery went pretty good. You will have some bumps in the road, but that is the way it goes. Then of course, if people see your scar and look at you and ask about the bypass surgery (I swim a lot) so then you have to explain what HOCM is. Then hopefully you will find yourself (like I do) walking outside and taking that big breath of air and almost crying because you are so happy to feel so much better. The other advice is learn to love that pillow. It does help!

                      Every day is a present I was diagnosed when I was 38, I have asthma which made me assume it was ashtma, getting old, and being about 30 lbs over what I should be. I have days when I would rather not know. Myectomy club 3Jan06 CCF, my life is so much better!!!!


                      • #12
                        Re: Surgery scheduled for August 30 at Cleaveland

                        Hello from the 10th floor computer at the Cleveland Clinic - I expect you will write me a note in a few weeks sitting in the same chair

                        I can tell you this - you are going to a wonderful hospital with caring people who will do everything they can to help you feel better.

                        I would suggest you get yourself ready mind, body and soul. Eat a great deal of protein as it will help your body heal. Focus on your future and know that you will have a few difficult days but that they will pass.

                        Get some rest and TRY not to worry too much.

                        Be well,
                        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)


                        • #13
                          Re: Surgery scheduled for August 30 at Cleaveland

                          I remember all too well, the stressful waiting period before my surgery in January of this year. I had gone to see Dr. Lever for the first time in November, who told me I needed surgery then. I wanted to wait til never or at least until spring, but my brother and all the HCMA family here on the board cured me with education and reassurance. And for many reasons, I'm so glad I did not wait ANY longer. Once my surgery was scheduled, during that seemingly never-ending period of waiting to leave for Cleveland, it helped me greatly to pray and focus on my future of feeling better, of being able to be more active with my children, and improving my longevity. I busied myself with researching possible outcomes, making lists of things to pack for myself and the trip and the hotel stay, and preparing things for my kids and lists for their caretakers.

                          My kiddos are smaller than yours, but one of the things our pediatrician suggested was that we tell the kids, particularly, our now 5 year old, that we would be gone a week longer than we actually planned to be. We had planned to be gone no more than 2 weeks, but because of complications I had, we were gone for 3 weeks. I was so glad that she had given us such great advice, as our son was putting "X"es on each day of the calendar, counting down the days til we got home, and we were able to surprise him by getting home just one day earlier (by driving straight through without overniting) than what the smiley face on the calendar showed. I would offer the same suggestion to anyone.

                          Another thing I was glad I had done, although it wasn't because I thought I would need it while I was in Cleveland, was I programmed phone numbers of a few people on this message board into my cell phone. I ended up in ICU a few days BEFORE my surgery, and they moved my surgery up a day, so I was able to call ScottOnBike to ask him to put a message out here for me to let folks know of my change in schedule. (I wanted all the prayers and positive thoughts possible at the right time, and not just the next day when my surgery was already over Then after my surgery while in ICU, due to more complications, I had a friend get in touch with Lisa (Salberg) for me. I needed her to help relieve my fears about another procedure (ICD implant) that was necessary -- the one stone I had not overturned. She did. I needed to hear her voice full of compassion, wisdom, and reassurance. I was very glad I had that contact information with me and that she "snuck in" a phone call to me in ICU.

                          What to pack, off the top of my head, although I'm sure I'm forgetting lots -- I had my own pillow from home for my head, my own favorite relaxing cd, which I listened to right into the anesthesia mask, pictures of and drawings from my kids, my own little fan, comfy BUTTON-UP shirts/pajama tops for post-surgery, and carmex (lip balm), as well as hand-sanitizer for the trip there and to home. (You do not want a cold/flu bug before or immediately after!)

                          We, too, had done a webpage on thestatus.com, which was GREAT! It was very motivating to make me walk to the lounge (from where Lisa just sat and wrote) to read and post messages. Also, we didn't really want phone calls, just because you never really know when you're going to be resting and at first, just talking is exhausting.

                          Feel free to pm if you'd like to chat on the phone prior to your surgery. The HCMA family here will be pulling for you and anxiously awaiting updates.

                          You're going to do great, Deb. You're going to be amazed at how awesome CCF is. You're going to be awed by the remarkable nursing staff there. Dr. Smedira's skill, and Dr. Lever's skill, expertise, care.... his everything, are wonderful blessings, true gifts. You're going to be glad you did this.

                          God bless,
                          Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.


                          • #14
                            Re: Surgery scheduled for August 30 at Cleaveland

                            Deb - I sent you a pm with phone number and asking for yours. Let's talk this week. I am hanging around my house recovering, so I would love to offer some tips and support.


                            Daughter of Father with HCM
                            Diagnosed with HCM 1999.
                            Full term pregnancy - Son born 11/01
                            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


                            • #15
                              Re: Surgery scheduled for August 30 at Cleaveland

                              Please read my thread from the beginning in "Surgery in Chicago" I hope you will comfort in my experience with recovery.