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Sandy H Find out more about Sandy H
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  • Surgery

    Have read so many times on this forum that having HCM doesn't prevent us from getting other diseases, but was still a shock to learn last Thursday that I have lung cancer. Have no symptoms what-so-ever but had signed up for a clinical trial to determine whether x-rays or CAT scans can pick up lung cancers earlier in smokers & ex-smokers. Am actually very "lucky" as this type normally doesn't produce symptoms until it has spread.(as I understand it) Well, my question is for any out there who have had myectomys, since both apparently involve opening the chest. I have pretty sever upper back problems so am really fearful of the back pain. Anyone care to let me know how their surgery affected their back, what to expect and maybe how best to deal with it afterwards and at home. Surgeon is waiting til I have my annual battery of HCM tests next week to schedule surgery. Am so very grateful to have my primary care physician, HCM specialist and the pulmonary & oncology people all under one "roof" and in touch with each other.

  • #2
    Sandy, I don't know anything about open heart surgery but just wanted to say I am sorry to hear that you have lung cancer. I will be praying for you and that your surgery is as painless as can be. God bless you, Kathy

    Comment


    • #3
      ouch

      Dear Sandy,

      I'm so sorry about your news. I hope you get some good input here. Be sure to air your concerns with the medical team as well.

      Please keep us posted and hang tough! What a gift to find it so early. Sounds like you are going to get great care and come through with flying colors!

      take care,

      S

      Comment


      • #4
        I am so sorry to hear your news. There may be a silver lining here...early detection is key to good prognosis. I am glad to hear you have medical professionals you can trust.
        Hey all you myectomy/MV replacements out there...lets give her some help here!

        Be well!
        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


        • #5
          Sandy,

          I tend to think of "back" problems as involving the spine. Post surgery, I did not have any spinal pain. Where I felt it was in the shoulders and in the muscles surrounding the rib cage. Mostly on the right side but there were days where the pain went all the way around. Pain medications did help some.

          Bob
          Cleveland Myectomy Crew
          Member since November 2002

          \"Chance favors the prepared mind!\"

          Comment


          • #6
            Sandy,

            Wow, what a story. I don't have any information on surgery, but wanted to say what a mixed blessing it must be to have signed up for that trial to begin with. May I ask if you are/were a smoker? Just wondering what made you sign up to begin with. I do hope that all of your HCM tests go smoothly and you are on your way to being cancer free very soon. I'll be saying prayers for you.

            Reenie
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

            Comment


            • #7
              Dear Sandy,

              Sometimes it just seems like 'one thing after another' doesn't it? I'm so sorry that you are facing this surgery but agree with the others that your participation in the trial was a mixed blessing; early prognosis and treatment will no doubt be such a huge benefit and I feel strongly that all will turn out wonderfully!

              I had a myectomy in August 2002 and wanted to share my ideas for you on potential back pain. I did have some back & neck discomfort (I wish I could tell you I didn't but I think being honest will help you prepare). For me, pain meds, warm heat and getting 'out of bed' and moving around helped a great deal (plus time passing post-surgery...). However, since you have a history of back pain/problems here are a couple of ideas that went through my mind that you might consider.

              My specialist indicated that having someone come to the room to do a massage has been immensely helpful to patients that have used this line of help. In fact, my specialist thinks that we don't do enough with massage therapy to help with the recovery process. Also, I would take to the surgeon and to the hospital your history of back problems and what has helped you in the past. I have found that the nurses and doctors often rely on 'what historically has worked for you' to plan for your needs. Take any pillows or other items that you have used in the past with you to the hospital, you may not use them but trust me, being in the hospital thinking, "If only I had my (fill in the blank)..." is worse than the hassle of taking them.

              All the best,
              Lynn
              Lynn Stewart
              HOCM 4/2002
              Cleveland Myectomy Crew 8/2002

              Comment


              • #8
                To all who responded....Hope you know how much it means to hear people say they care & " I will pray for you".
                Thanks Sarah, Thanks Lisa, Kathryn2, Bob, Lynn & Reenie. Yes, Reenie, I was a smoker for 43 years--quit 5 1/2 years ago. Told the Dr I wished I could go back and change things and he was so nice in reminding me that that wasn't helpful to me and we only have to deal with today. I took the test because I'm like every other smoker who has that fear in the back of their mind.....saw it advertised on Tv & something or "someone" prodded me to get up & make the call. Lynn, the idea of a massage is something I will look into and yes the special items, especially the pillow. Thanks again and if you all come up with more help for me, I will be in your debt, and very grateful, too. Didn't one of you out there talk about so much pain that you couldn't sleep or was it lie down and had to sit up? Want to know what helped there. Thanks again, all of you

                Comment


                • #9
                  Hi my friend,

                  I can't really say that I suffered with back pain after surgery. The only time it seemed to bother me was when reaching behind me to scratch my back or undoing my bra. I do believe I made a comment something like, "I feel like I've been cracked open like a crab". As far as sleeping on the sofa, for me, it was just easier to get up and down from a reclining position.

                  I'm sorry to hear of your latest news, but glad that it was caught in the early stages.

                  My best advice to you would be to take the pain medication as prescribed. I tried to "tough it out" - not a good idea.

                  I'll keep you in my prayers.
                  HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07

                  Comment


                  • #10
                    Sandy, so sorry to hear your news. I will certainly keep you in my prayers. I had my myectomy 21 years ago and I remember the thing that felt the best was the nurses coming in at night and pounding on my back then rubbing it. Sounds sore the pounding but felt so good. Keep a positive attitude. As an ex smoker myself I just want to say don't beat up on yourself too bad. Hang in there.
                    Midge

                    Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                    ICD&Pacemaker 1996
                    Heart transplant March 19, 2004 @ Mayo Rochester
                    Mom of Kaye.

                    Comment


                    • #11
                      Sandy, if it has to be lung cancer....thank god it was detected when it was. Early detection is key. I find it amazing that it was picked up the way it was! I'm sorry you have another battle ahead of you.

                      I have nothing to add regarding the myectomy concerns since that's one procedure my husband hasn't had.

                      Take care,

                      Karen

                      Comment


                      • #12
                        I feel as tho I've received a dozen hugs. My mood/attitude is so much better today...combination of the little anti-anxiety pill they gave me and all the prayers offered. Thanks so much....it really does make a difference. Will let you know when I go for surgery.....soon, I hope! Am doubly blessed to have found this site.

                        Comment


                        • #13
                          Sandy, I'm just glad we're here when you need us.

                          Reenie
                          Reenie

                          ****************
                          Husband has HCM.
                          3 kids - ages 23, 21, & 19. All presently clear of HCM.

                          Comment


                          • #14
                            Thanks everyone for showing Sandy what a wonderful caring community we have built here... You are all wonderful for the support you share with each other every day...
                            Good night from Chicago ACC 2003!
                            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


                            • #15
                              Surviving Cancer

                              Well, I just want to say that I am a cancer survivor and you will undoubtedly be one too! 12 years ago I had a malignant melomona removed from my back. Doctors did not feel that optimistic about my prognosis. Even so, there has been no sign of any recurrance. You will get good, early treatment and this will correct the problem, I am certain, just as it did with me.

                              Hang in there! Today's New York Times has an article in their science section about how much progress has been made in treating cancer over the last 50 years! Check it out!

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