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Theresa's Myectomy: January 19th

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  • Theresa's Myectomy: January 19th

    Ok, so with one week to go, the count down is on and time for a new thread from me. We'll leave on Sunday. I sure am going to miss my kids

    Any last week advice? Stuart, you said you'd have me in mental shape by now / next week ? Felix? Eve? Catherine? Joyce? JAH? Scott? Jim? John? Nikki? Mark H? Matt? Laura? Dorothy? Jim? ....who am I forgetting? Any other previous myectomites out there? Any others with any advice even if you haven't had a myectomy?

    Laura, I believe it was you who suggested doing a page on thestatus.com, but when I go to set up a page, it asks for a sponsor code if my hospital sponsors the site. Where do I get this info from? I guess I can call Cleveland to ask, but who at Cleveland do you think I should bother for this info?

    And Linda or Sarah, can you tell me more about this saline nasal spray? All 3 of my kids have colds right now. Eeeks.

    Thanks and Blessings to all,
    Theresa

    Quote:
    Posted: Sun Nov 27, 2005 6:48 pm Post subject: Re: December 30th for me
    --------------------------------------------------------------------------------
    Scott, Best wishes to you.

    Sarah swears by her saline nasal washings to ward off the cold germs. Now they even package the aerosol cans just for that. I'm a believer after last winter. I'm sure Sarah's method works too, but the pre-packaged is so much easier. Use it if you even think you are getting a scratchy throat. Right, Sarah? Linda
    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.

  • #2
    Theresa - Best defense, of course - the frequent and good handwashing for everyone in the family. Recent studies show the remote to the TV is one of the most contaminated things we touch. If I were you, I'd clean the one in the hospital before I use it.

    As for the saline, you can buy it in Walmart and prob just about any other store, in the "cough and colds" section. It's called Simply Saline, comes in a small (about 4-5 inches tall) aerosol can, white with black lettering. This seems to me to be the easiest to use. Follow the directions. Don't do anything to irritate the nasal passages, you don't want to cause an irritation that may delay your surgery. Don't overuse it, I just use it if I feel the cold symptoms, scratchy throat, etc., or if I've felt really exposed to someone with a bad cold or lots of cigarette smoke. It's not something to use daily.

    Good luck, we'll be watching for updates - Linda

    Comment


    • #3
      Theresa:

      I don't have my information with me right now, but that "sponsor code" for TheStatus.com that you were referring to in your post can be found in your pre-op package that CCF will Fedex to your home.

      I am assuming you should have already received your package. In mine, there was a special sheet that described what TheStatus.com was about and it listed the CCF sponsor code right there on the sheet.

      Hope that helps-

      Mark
      Lexington, KY
      Age: 38
      Wonderful wife of eleven years (Gena) with three great kids (Lindsey, Conner and Laney)!
      HOCM diagnosis: January 2004
      CCF Myectomy Club: January 16, 2006

      Comment


      • #4
        Theresa,

        Mommy will be fine and the kids will pull through with flying colors.
        By day 2 you'll be running down the hall to the computer just to post on the board that you feel like dancing.

        Have a great time in Cleveland
        Stuart
        Cleveland Myectomy Club
        August 31, 2004

        Comment


        • #5
          I sure am going to miss my kids
          I sure did miss mine too. But in the long run.. it is soooooo worth it.
          You will be so happy you did this.

          And you know how I feel about Dr. Lever and Dr. Smedira, they are Divine Hierarchy as far as I am concerned. They are the best in the world.

          Theresa, I will call you today in the early evening and if I we don't touch base then I'll call you again tomorrow. (Or please call me anytime if you want.)


          As always, many hugs
          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


          • #6
            Just remember to take each moment as it comes plan your pain meds well and know when you last took it, so you will know when the next dose is coming , plan activities around the times you are getting maximized effects from them and don't be afraid to take them . Statistics show that those who feel little to only medium pain have better recovery's and faster. You will not get addicted. You will find it easier to do your breathing, walking and you will get better sleep /rest if your pain is managed well. I think most of us found that we did not need excessive amounts of pain meds to get through the recovery. If the nausea comes and does not result in vomiting try to at least get in fluids and small portions of what appeals the most to you. A balanced diet is nice but not always what works best in those early post op days. If you get nausea/ vomiting with the pain meds, talk to your nurse early on as to ways, or additional meds that can help minimize this unfortunate and often common side effect. For me, when times were tough I would project my thoughts forward and think/ fantasize that by the next few hours days weeks, things would be better and better.

            We will all be thinking about you and know you are going to do well. Were counting on it in fact.

            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


            • #7
              Theresa,
              Mark is correct, I hope you have found this in the literature sent from the hospital. I will look through anything I have left to see if I still have it.

              If you can't find it, you can do this once you are there. Are you taking a computer (lap top?) with you? If not, the computers at the hospital (10th floor is a good one) have the site as their home page and you may be able to set your page up from that screen without having the code. Not exactly sure of that, though (not having the code part). Otherwise, ask the people in admitting (I found those ladies VERY nice) and they will help you. They helped me with a few things that had nothing to do with admitting.

              As well, making up your personal page does not take very long at all, so if you're feeling nervous about having enough time, it really doesn't take long. Having your own lap top makes it nice for your husband to post things if/when he's not at the hospital, but the lap top is not necessary as the hospital computers are usually available enough to use (people are considerate of time usage).

              Lastly, if you don't set it up at home, don't forget to print a page of your email address book, so you can send a message to all your friends and family with the link, plus your login and password that will be required for them to access your page.

              Frankly, I found the site so comforting so that is why I urge you to take the few minutes required. The site here as well is extremely comforting, but to hear from the people that know you the best is truly a blessing and comfort. Like I said, I continued to use it once I was home (for months) and I had 4000 hits and over 200 messages throughout that period. It truly helped my mood during my recovery.

              Bless you as you get ready to go!

              Laura
              p.s. cafeteria fruit smoothies!
              Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

              Comment


              • #8
                Hey All,
                Thanks for all the info and advice. Ok, got the patient webpage ready. That thing is pretty cool. I'm surprised it's free. Anyway, my husband or friend will be updating it, so if you want, go to thestatus.com, and then you will need my last name of Wall, and the password is Theresa'sHeart06, yes, I know, very original. Don't forget the apostrophe or it won't work.

                Ok, got all of my notes of things I need to be sure to have; took a look at some old posts on the board today (prompted by a phone call from Stuart). Oh my goodness, I was cracking up --- that whole pizza thing between Stuart, Felix, & Jim, that was good, pre-myectomy medicine . Tomorrow my 4 1/2 year old and I have a Mommy-Son day, and then we leave Sunday morning. I need to tie up some loose ends around the house and leave lots of notes for Grandma and the rest of the childcare providers, but then I think I'm ready, well, you know, as ready as I'm going to be....

                Thanks so much for everything.
                Theresa
                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.

                Comment


                • #9
                  Theresa - Enjoy your Mommy-son day. Good luck with all, and the same to Grandma. Waiting at home for news is such a tough assignment! We'll be watching for progress reports, Best wishes - Linda

                  Comment


                  • #10
                    Hi

                    I just got off the phone with Theresa and they have moved her surgery up to Wed the 18th from Thursday the 19th.

                    Hmmmm and to think that if I would have stayed out of strange hot tubs and Mark would have not used his Mach 3 we could have been moved up a day too.

                    Good luck to you Theresa !!!!!!!!!!!

                    Scott
                    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!!!!

                    Comment


                    • #11
                      I just spoke to Theresa - boy she has their attention at CCF. She is fine and yes having her myectomy a day ahead - due to the fact she had some 'interesting' reactions during her cath. Her B/P dropped and she made every one in the room a tad bit concerned. This from the girl who wanted to wait until spring for her myectomy. She is glad she is good hands as are we all!

                      I hope to hear from her sister when the myectomy is over and I will update you all then.

                      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


                      • #12
                        I met Theresa on Monday!

                        Greetings - as I was waiting to meet with Dr Lever on monday, this woman came over and asked me if I had been on the boards - I immediately knew that she meant - the HCMA boards and was amazed. She introduced herself as "Theresa" and gave me her screen name. We had less than a minute to talk - she got called back, and then I got called back - but she did talk with my wife for a minute and expressed her hope that I wouldn't be joining the "club."

                        Wow! I had never met anyone with HCM - she looked great - and it looked like she had a team of support with her.

                        Well - after lots of tests, Dr Lever has diagnosed me as a member of the HCM club - yes, good and bad. Good that I finally have a diagnosis - good that it could be much, much worse. Bad that I am a member.

                        But Great that this website and boards exist. Thank you all.

                        And, may god bless Theresa and the team of surgeons to get her through today!

                        Andy P

                        Comment


                        • #13
                          I just read on Theresa's site that her surgery was finished around 11:30 with removal of obstruction. Andrew and others were hoping to see her around 1:30. Sounds great so far!
                          Laura
                          Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

                          Comment


                          • #14
                            Laura - Thanks for the news - Linda

                            Comment


                            • #15
                              So glad it is behind her. Thanks for the update Laura.

                              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

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