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Theresa's Myectomy: January 19th

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  • #16
    Glad the surgery is over. We are praying for you and thinking about you! Looking forward to getting another update. Janet
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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    • #17
      I just read updates at Theresa's site again. She had no complications during or after surgery, but did have a lot of pain yesterday. Andrew said she had nausea through the night from pain meds. I feel for her having had the terrible nausea myself. I'm sure Dr Lever is working hard to help her as he and the staff did for me.

      Her chest tubes are to be removed today and may already have.

      All in all, I would say all is going 'normally'........
      Laura
      Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

      Comment


      • #18
        OK I feel like an idiot...I tried several times to log on to Theresa's web page and could not. Has her password changed? I'm using theresa'sheart06 last name Wall.

        Anyway until then thanks for the updates. My prayers are with you and your family during this time. I know the kids will be just fine as I went through this recently myself and my kids did great. They recieved all this extra attention and had fun while we were gone.

        Continued blessings to you and your.

        Catherine

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        • #19
          Thersea's Myectomy: January 19th

          Catherine,

          Try capitalizing both the "t" in Thersea's and "H" in Heart. I found it would only work that way for me. Good Luck!
          Dorothy

          Diagnosed 1996, Myectomy Aug. 2000, 3 Radio-frequency ablations for a-fibs 2003-2005.

          Comment


          • #20
            I just read Thereas's update on the web page. I was really nauseous after surgery too -- ugh.
            And, I too had a lot of pain. But it is so soon after sugery, that this is to be expected.

            My thoughts and prayers are with Theresa and her family.
            I'm thinking of you sweetie... It will get better as you heal.

            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


            • #21
              It is starting to sound like being nauseus is the least of Theresa's current worries. I just read this update from her Status.com webpage. Sounds like yesterday was a really tough day for our friend Theresa. Keep those prayers coming...I now know why I was unable to track her down upstairs yesterday. Apparently, she will remain in the ICU until at least Monday..

              news updates
              <http://www.thestatus.com/images/clearpixel.gif>
              21-Jan-06 01:48 AM - Annette :
              Dear friends on the journey with Theresa,

              I about fell over this evening when I arrived home to message from Andrew asking if I would call Theresa. I wasn?t sure if I should actually call her, but since I could not reach Andrew for the ?okay,? I decided to go ahead. I feel like I have just opened a Christmas gift. It was sooooo good to hear her voice. Her voice is quiet, little more than a whisper, but it was my dear friend Theresa. We talked about many things, but the bottom line of our conversation was this: She is requesting our continued prayers. She can feel our prayers. She feels embraced by our Heavenly Father. Her Friday was not a very good day.

              Once again, I want to remind you that I am not a medical person, and I may very well mix up some of the medical information, but ? I?ll give it a try. Her overwhelming concern right now is that she may be in need of a pacemaker. This is something she was not expecting and had not educated or prepared herself for. So far, they have been unable to wean her off of her external pacemaker, and today she had what she called a ?big scare.? As they were transitioning her from her bed to her chair, the pacemaker somehow went totally and all of the sudden Theresa?s vision was gone, she felt like her heart stopped, she could bear no weight on her legs, but yet she could hear what was going on around her. She was very scared. The medical people rushed around and somehow got new batteries, or something, into the pacemaker. She could feel her heartbeat return and her vision came back. Apparently this is something the nurses had not experienced before. Normally, a pacing machine will give some warning that the batteries are low. Thankfully, when her doctor made rounds, he would not until there were two pacemakers in her room. He was adamant that this situation would not happen again. Theresa was very thankful for the way he handled that. I think she said that yesterday her heart was 100% dependent on the pacemaker and today her heart was beating on its own in some parts ? not the entire cardiac system. (I need to study the various chambers and electrical systems of the heart) She specifically requested that we pray that her heart does not become dependent on a pacemaker. Although this thought scares her, she did acknowledge that the situation could be much worse. I think part of her fear right now is the unknown.

              She said the days are long. Visiting hours are very limited, so she has much time on her own. When I asked her what she thinks about, she said her primary focus is on her breathing. Although much better than after surgery, breathing is still painful and still a chore. She is eager to see Andrew and her siblings for each visit. She will be in ICU until at least Monday. She is allowed one picture of her kids and nothing else. It sounds like her room is basically a curtain tent. She can constantly hear all kinds of buzzes and beeps from others around her. It is difficult to sleep. She has very limited telephone usage (I think a nurse basically snuck her a phone so a couple people could call her this evening). However, I have to say that her sense of humor is intact and a little giggle even escaped a couple times as I told her about her kids. She was so complimentary of Andrew. She said he is so strong and constantly in communication with our Creator. I can only imagine what kind of a witnesses Andrew and Theresa are being to the people around them.

              So, again, I beg you to be faithful in praying for Theresa and Andrew. Theresa clings to Philippians 4: 4- 9. May we all pray for her to be able to rejoice in the Lord, display gentleness, not be anxious, place her concerns in our Father?s embrace, be filled with a sense of peace that defies understanding, and may be full of thoughts that are pure!

              Phil 4: 4-9: Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

              So thankful for the gift of Theresa?s friendship,
              news updates
              <http://www.thestatus.com/images/clearpixel.gif>
              21-Jan-06 01:48 AM - Annette
              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

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              • #22
                Mark - Thanks for posting this - I know it will reach so many more people here on the message board and generate lots of prayers and support for Theresa. Thank you for Annette for helping out with Theresa's web site. I'm sure Theresa and her family will be grateful for her help. Theresa has our prayers and well wishes. Linda

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                • #23
                  Thank you for the update.

                  I am praying hard for Theresa.
                  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


                  • #24
                    Mark

                    Thank you for the post I will keep her in my prayers


                    Shirley
                    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

                    Comment


                    • #25
                      Copied from thestatus.com

                      22-Jan-06 01:42 AM - Annette :
                      Dear ones,

                      I will try to keep this short. I would like to fill up a page. I talked to both Theresa and Andrew today. Andrew would like to update the website himself, but his internet access if very limited, at best. I get the feeling that overall, Theresa had a fairly good day; better than yesterday. She sat up for 3 hours, was talkative, ate fairly well (including some ice cream brownie fruity dessert this evening), and is learning that she needs to stay ahead of the pain. Apparently she went an extra hour before taking her pain medication and really felt the consequences of that.

                      This morning when I talked to Andrew, he told me that more discussion about the pacemaker was on hold until Monday. He was thinking they would give her heart a few more days to see if it could “repair itself.” However, later in the day, some people from the pacemaker team (that’s not the correct word, it’s something like electrophysiology team) came in to asses all of the data that her pacing machine has been collecting. Much to Theresa’s surprise, and dismay, they told her that she would not be able to leave the hospital until she had a defibrillator surgically implanted. Needless to say, she was caught off guard by this sudden change in news. Before the myectomy, she was told she had a 2 – 4% chance of having this complication. Given that she was unprepared, she is having a tough time processing all of the new and unexpected information. If I understand correctly, a defibrillator is a device that acts both as a pacemaker and can also shock her heart if it gets out of rhythm. The medical team would like to schedule surgery for Monday. Theresa would like to hold off a day or two so she can get input from her doctors. Since it is the weekend, she will not see them until Monday.

                      We could help her by praying that she is able to get access to the information she needs (reading material, conversations with people have been there etc) in a timely manner. And, as she processes this unexpected news, that she can find a sense of peace. The surgery itself it supposedly fairly minor, but since she is now living what was predicted an unlikely outcome, she is fearful of possible complications from this next surgery.
                      Cleveland Myectomy Club
                      August 31, 2004

                      Comment


                      • #26
                        Many positive thoughts and prayers for Theresa.

                        I think it is very hard when we go into such a surgery as a myectomy and have not thought about or prepared ourselves mentally for the possibility of things going in the opposite direction as predicted/ projected. I am a very positive and optimistic person and believe however that each person going into major surgery( a myectomy) has many, many stones to turn over beforehand. Personally, I left one unturned stone myself and felt, what you are now describing as similar to what Theresa is experiencing. Please tell Theresa to take it in slowly and to talk , talk , talk to anyone who can offer her expert insight and support.

                        My issue unlike Theresa's, was a-fib and it took a nurse the better part of my 5th night from 3 am( when I awakened in total fear realizing that the intern on duty had not shown up to answer my many questions) til past dawn to help me calm down and resolve some of my fears, issues with what was happening and what had been happening to me from 2 pm on the day prior. It is a very, very scary thing when we have not at least visited the possibility of what if... and then the what if occurs.

                        Please tell Theresa we are all here for her, I am glad that I had my AICD in already several years before my myectomy. The AICD implant will be easier by far compared to what she has already gone through.

                        Sending prayers to all.

                        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


                        • #27
                          Still waiting on my elusive echo......but while walking around the 8th floor a few minutes ago, I just ran into a nursing supervisor who had seen Theresa earlier this morning. She knew I was curious for information and told me that Theresa "looked much, much better today" and that she (Theresa) was wondering what floor I was staying on.

                          This nurse also said she expected Theresa to be upstairs in a room (8th or 10th Floor) by sometime tomorrow (although I am sure this depends on whether or not she ends up getting an ICD put in tomorrow).

                          I'll post more if I hear anything...

                          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


                          • #28
                            I received a PM from Theresa's friend today, Theresa wanted to speak to me before Monday. I just spent about an hour on the phone with her. She is weak, but doing well. The pacer/defib looks like it will be needed, however her heart did start to function on it's own early today, so she is NOT 100% pacer dependent.
                            With her family history of HCM, her drop in B/P and this new heart block it sounds very reasonable for her to have a device. She is dealing with this new reality, unfortunately it was the ONE possibility that she did not prepare herself for - isn't that always the case.
                            When I know more I will let you know.
                            Best to all,
                            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


                            • #29
                              Copied from thestatus.com

                              23-Jan-06 12:46 PM - Andrew : Theresa continues to do well. She moved out of ICU today and is in a regular room. She looks good and is trying to think of a way to get into the shower - so she's feeling good too. We'll meet with the EP (defibrillator) team and her doctor either later today or tomorrow. Until then, its just more rest and recuperation. I think she'll rest much better now that she's out of ICU and all the noise and activity that goes on there around the clock. We'll keep you updated, thanks for the continued prayer and well wishes
                              Andrew
                              Cleveland Myectomy Club
                              August 31, 2004

                              Comment


                              • #30
                                It's Wonderful how everyone is so diligent about sharing info, we crave. It's calming to hear about progress being made (in spite of set backs) The ICU has to be one of the most stressful places on earth! Knowing you are progressing enough to leave the ICU, just feels better.
                                Prayers to Theresa & an extra dose of strength.
                                RONNIE

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