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Having Myectomy Done At Cleveland....Very Nervous


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  • #31
    Great news!!! What a mountain you have climbed-but you did it. Take care of yourself during your recovery and pop in when you have a chance. Best wishes to you and your family.

    It's not what you gather, but what you scatter that tells what kind of life you have lived.

    Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


    • #32
      I am thinking about you and praying for you Steph.
      I am very happy that everything went well. I wish you continued improvement, a really speedy recovery and the best wellness.


      Big gentle 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.


      • #33
        Hello, again. This is Sally, Steph's mom. I'm writing with good news and some questions. First, the good news; Steph is out of the hospital as of noon today and we are staying at the Residents Inn on Prospect. The computer room is very far from our room, so Steph is making phone calls while I am giving updates. She will post when she can get here comfortably. Thank you all again for your thoughts and prayers. After 2 days of nausea (because of the anesthesia and the narcotics) Steph bounced back rapidly. Her groin bleed, from the catheterizing, is bothering her as much as the incision site. Any help on sleeping methods would be greatly appreciated! When she gets the chest comfy the groin hurts and visa-versa. You all have been very helpful so far, so Steph asked if I would put this to you and see if you can help. Thanks. We are hoping to head home to northeastern PA on Wed. Maybe make a two day trip. We'll see how she's doing by then. We'll talk later. You are a wonderful help. Thank you, thank you, thank you!
        Had myectomy on March 1 2005 and was implanted w/an ICD on April 28 2005....please refer to me now as the Bionic Woman


        • #34
          Hi Sally
          Right now every position would be uncomfortable.
          I found lying on my back was the only comfortable position that didn't have anything to do with my surgery. After awhile, she will be able to lie on her side.

          As the weeks go by, Steph will have more energy. Tell her to rest when her body tells her it's tired. Also, using the pain medication will help with the discomfort. Take it as prescribed. If she doesn't (in the early stages of recovery) she will get miserable and the pain will seem unbearable.

          BTW, I am originally from Northeastern, PA. Have you ever heard of Summit Hill?

          Please keep us updated as to her recovery.


          • #35

            We're so happy Steph is doing so well. The power of prayer and the great surgeon and staff at CCF sure did a wonderful job.

            I found sleeping on my back with my head elevated some helped. I could not sleep on my side for about 60 days because of drainage tubes in my side because surgery two weeks after my myectomy because of infection centered in my left chest area.

            My sleeping has improved greatly. Now almost a year from surgery I sleep better now than in many years. I guess Steph being as young as she is didn't have trouble sleeping prior to surgery and she'll be doing fine.

            Thanks for keeping us posted and give Steph our Love and tell her how much we all care for her and continue to pray for her great recovery.



            • #36
              Great to hear Steph is coming along fine. As far as sleeping, I slept on my side my entire life. After surgery I had to sleep on my back for about the first 6 weeks, almost sitting up. That was when I was in bed. I would sleep 2 hrs in bed, then 2 hrs in the recliner, then 2hrs in a regular easy chair. Talk about not getting good rest. Where ever I slept I had lots of pillows to hold me in place so I wouldn't roll around much.

              I was afraid if I slept on my side I would hurt my mending ribs. The doc told me that my ribs were basicly ok after 2 weeks. But I waited as long as I could before I tried my side.

              I never really took pain meds. after I left the hospital. I never felt like I needed them. I guess I was lucky.

              I hope things continue to go well for Steph on her road to recovery. I will keep her in my prayers and please keep us posted...


              May 17 will be my 1 yr anniversary for my myectomy
              " Real Courage Is Being Scared To Death But Saddling-Up Anyway "


              • #37
                Steph and Sally.

                Welcome home to PA. I have followed your adventures with interest. I am so happy the surgery turned out as well as it did.


                God Squad co-moderator
                Nothing is as gentle as strength and nothing is as strong as gentleness


                • #38

                  Glad to hear Steph is progressing well.

                  I think as far as the groin , it will be necessary to try and find a position for her leg that it does not impinge on the area of discomfort. Try using pillows in various angels of elevation to see what feels best . This will take some experimenting and quite a lot of assistance and patience from you Salley. For the chest , the only comfortable position for me , was elevated about 45 degrees while on my back. I missed the hospital bed because putting the knees up a little kept me from sliding down off the elevation. I will tell you, I used that rubbery shelf liner stuff to keep my but from slipping and putting a wedge of pillows under my knees helped too.

                  Hope this helps. Good luck on the ride home.

                  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


                  • #39
                    Great news! Thanks for keeping us posted. We're rooting for both of you. Take it easy, Lisa I.


                    • #40

                      You may want to try a pillow rolled up under her knee it will take the oressure off her groin, i'm glad the surgery went well and i hope for an uneventful trip home

                      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


                      • #41
                        Steph and Sally--

                        How's Steph doing now? I've been hoping she's been on the mend just fine. Let us know, when you can.

                        Best wishes,
                        Lisa I.


                        • #42
                          trouble posting

                          We've been having trouble posting, again. If this posts I'll let you know how Steph is doing.
                          Had myectomy on March 1 2005 and was implanted w/an ICD on April 28 2005....please refer to me now as the Bionic Woman


                          • #43
                            Steph, post-op

                            Hi Everyone, For some reason we have trouble posting. Steph had written a long post when she got home from Cleveland, but it didn't take. She was very frustrated! Today, it worked! So Here's our story. Steph was discharged from the hospital on Sunday, March 6. We went back to the hotel for 3 days. On Tuesday, she was concerned about swelling in her ankles and her left arm. She called Dr. Lever and he said if we could come over right then, he could see her right away. We were there in 20 minutes. He came out and got her and checked her over thoroughly. She was very impressed! He allayed her concerns and on Wednesday, the 9th, we headed for home. Steph wanted to make it in one day, if possible. We stopped every hour and walked for a bit and in 8 hours we were home!. She did her exercises and walked around the house and up and down the stairs several times a day. She couldn't get to see her cardiologist at home until the 29th(!), so on the 20th we went to her home and she went back to work part-time on the 22nd. I stayed with her all week and she improved very well. I think just being back to work with everyone and having to do some things, she got stronger. She did not over-do it, but was very sensible. She saw her doctor on the 29th and he said her murmur was gone! He was very pleased! He would see her again after her 6 week check-up in Cleveland. On Thursday, the 31st, the scab fell off the top of the incision and there was puss and a hole! She was very concerned, so went stopped at the docotrs, he took a look and said the stitch was abscessed. He told her to put hot compresses on it 3-4 times a day. By Saturday, it was looking real good. She is now at her place by herself and is doing wonderfully well. We leave for Cleveland on the 19th for her 6 week check-up. Hopefully she'll get a clean bill of health. Youth is a wonderful thing! They recover so much quicker than we older folk. If you have any questions about her recovery please ask and, if we can post, we'll answer them. Thanks again for all your help and prayers.
                            Had myectomy on March 1 2005 and was implanted w/an ICD on April 28 2005....please refer to me now as the Bionic Woman


                            • #44
                              Well hi there!

                              It's so nice to hear from you. Sounds like Steph is doing fantastic! I had an abcess or two as well... it is not uncommon. Aside from being pretty 'icky' they usually are of no concern. I know what you mean about getting back to work and helping the recovery. Getting back into schoolwork after my surgery, keeping a regular schedule, and being around other folks really helped me feel 'normal' a lot faster.

                              As far as Steph's post 'not taking'... there's a bit of a time constraint when writing a post. If it takes a long time to write, then it times out and gives you an error. Many folks write their longer posts in Word or Notepad first, then just copy/paste it over to the board.

                              Once again Steph, i'm so glad to hear you are doing well, especially considering what you had gone through immediately prior to the surgery. You must be very happy you went through with it now!

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


                              • #45
                                Hi all.....We'll see if this works. My mom gave a pretty good account of how things went. Physically, I'm doing ok. Mentally and emotionally, I'm still processing....I think I'm still in shock that I had open-heart surgery. I kinda have to keep repeating it to myself. It took a day or two after I was out of the hospital for me to really look at my chest. I mean, really stand there in front of a mirror and look at it all. Ya know, sometimes looking at a wound can make you feel it more??? That's how I felt. It took a good week or two, once I was home, to ask my parents questions about what I was like when they say me after surgery and just really talk about what exactly happened in the operating room. I'm usually not squemish about that kinda stuff, but when it's actually you, it's different, I guess. Thank you all so so much for your help and your concern. It truly meant and means alot. I'll be happy to answer any questions anyone may have concerning their surgery or if it's just someone they know.......I hope I can help, they way you all helped me. Talk later......thanks again, Steph
                                Had myectomy on March 1 2005 and was implanted w/an ICD on April 28 2005....please refer to me now as the Bionic Woman


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