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Carolyn Jones's Myectomy

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  • Carolyn Jones's Myectomy

    Carolyn has asked me to give you an update on her surgery at The Cleveland Clinic, but also, to thank HCMA for being such an effective network for support and information. In particular, she asked me to thank Lisa, Patrick and Stuart who were so generous with their time and their advice. It is so gratifying to see an organization like HCMA that is living up to its mission so effectively, but also with such a positive attitude of caring and responsive help. Carolyn says she owes so much to all of you, who prepared her for the surgery and recovery.

    While she was at the Clinic, we posted updates to her website at www.thestatus.com (I recommend it to every one), and the following are some of the daily posts to give you an idea of how her time in Cleveland went. Thanks again for everything.

    Tom Jones




    news flash
    Carolyn returned home April 6 after a week at the Cleveland Clinic. Her surgical myectomy was performed on March 31, and she did extremely well, leaving ICU 10 hours early. The ICU staff called her a "stellar" patient. The surgeon said the surgery went very well and he did not replace her mitral valve. He felt that the myectomy almost completely solved the regurgitation problem. She still has some slight mitral valve regurgitation, but the risk associated with this is less than the risk associated with a valve replacement. Carolyn and all of us in her family are so grateful for all of the thoughts and prayers that gave her encouragement and comfort.

    01-Apr-05 10:18 AM - Tom : The ICU staff say that Carolyn is a "stellar" patient and they are moving her to the "stepdown" floor about 12 hours early. When we saw her in the ICU this morning, she was eating a grape popsicle and doing really well -- no pain, alert, and happy. Considering the condition of people around her in ICU, we realize how lucky we are.

    01-Apr-05 11:54 AM - Emily : Mama is now on the stepdown floor. She is in room 100-19 on the 10th floor. She is resting but, has some neck pain. We have asked for a heating pad and hope she can sleep some this afternoon.

    01-Apr-05 06:31 PM - Emily : Hi Everyone,

    It's a little after 6 p.m. on day 1 of recovery and things are still going very well. As you can imagine, Mama is tired, but not in pain - just uncomfortable. She was up at 3 a.m. last night agitated by the ventilator and hasn't been able to rest since. At 8 p.m., she will be receiving another dose of pain medication and at 9 p.m., she will be given some Ambien for sleep. We are expecting tonight to be much more restfu. than last night.

    The staff here is WONDERFUL. Honestly, we can not stress that enough. Every nurse, doctor and technician have been high touch and incredibly kind. The Cleveland Clinic definitely has a culture of hospitality - pretty unusual for a hospital setting but, so FABULOUS for patients and their families.

    Also, her incision looks wonderful considering what she has been through. The incision begins right below her collarbone and is approx. 10 inches long. Because, they use glue rather than staples, her scar should be minimal. Once it heals, it will look more like a finger nail scratch than an open heart surgery scar.

    That is about all the information we have for now. Keep the positive thoughts and prayers coming - they are DEFINITELY working.

    Love you all, Emily


    01-Apr-05 08:59 PM - Emily : Hi Folks,

    It is close to 9 p.m. and Barbara (my mom's sister) and I have just come back to the hotel. It has been a long but wonderful day. Daddy will be spending the night with Mama tonight.

    Every 2 hours, she will be checked by Yolanda - a FABULOUS ICU Cardiothoracic nurse. She will be making sure her vitals are on still on the right track and all that jazz.

    Around 5 a.m., the foley cath will be removed and the nurses will be getting her up a few times during the day to walk and she will be expected to sit up and eat. She is doing so well but they said day 2 and 3 will be the hardest on her. We are told that once we get to day 4, she should be over the major hump.

    This is about all we know.

    We will update you all tomorrow and let you know how she is progressing. Please keep posting messages - we are passing them on and she LOVES all the virtual hugs and kisses.

    Keep up the positive thoughts and prayers..... they are working and the next two days will be some of the toughest so we will need all the help we can get.

    We all love you and can't wait to be home so everyone can see our super star patient.

    02-Apr-05 09:54 AM - Emily : Hi All,

    It is almost 10 a.m. in Cleveland and SNOWING. We can't believe it, we feel like we are in a blizzard but, we are southerners so any snow is a shock to our system!

    Mama had a hard night. She is continually clearing her throat which is normal and necessary. During the surgery, fluid tends to settle in the lungs and this causes her to constantly clear her throat. As you can imagine, this is keeping her from resting. Daddy stayed with her all night so neither of them slept longer than a few minutes at a time.

    Barbara and I got here around 9 and sent Daddy home (against his wishes) to rest and clean up. He will stay again tonight and needs his sleep.
    They did go ahead and remove the Foley Cath this morning at 5 a.m., so it will be up to her to get up to the bathroom for the rest of her stay. She will also be eating while sitting - she has little or no appetite so we will see how much we can force down her.

    We are anticipating being home Wednesday or Thursday. Intially, they thought Tuesday but because her surgery was close to the weekend - she will need an extra day or two. The hospital slows down quite a bit on the weekend. I guess doctors need rest too!

    More updates soon.

    Miss you all, Em

    02-Apr-05 12:53 PM - Tom : Carolyn is sitting up to eat, and she will begin to take short walks about a half dozen times a day. She has no temperature, her blood pressure is perfect, and her heartbeat is good. She is having trouble sleeping because of the irritation to her throat by the ventilator so she had a restless night; however, she seems awfully good to me. As you would expect, she is an engaged, involved patient and she is determined to follow instructions to get maximum benefit from this surgery.

    02-Apr-05 07:58 PM - Emily : Hi Everyone,

    It's around 7:35 p.m. in Cleveland and we are almost done with Day 2. As they warned us, day 2 is HAAARRRDDD! Mama is exhausted especially since she has been unable to sleep since Thursday!

    We had one little scare this afternoon. Around 2 p.m., Mama's heart went into afib and her rate per minute shot up to 230 bpm. The nurse came and administered some medication and her heart has been resting around 75 bpm since. It was scary, but according to the staff it is VERY normal. Two-thirds of all patients experience this type of problem.

    Since her episode this afternoon, she has been very tired. We got her up around 7 p.m. and had her walk to the nurse's station. It was tough, but "supposedly" the next two days will be the toughest.

    Please keep us in our thoughts and prayers... tomorrow will be equally hard (if not a little bit tougher) so.... we need all the positive prayers.

    03-Apr-05 10:22 AM - Tom : Carolyn had a rough night and is exhausted right now. The cardiologist ordered a chest x-ray to see if there is a problem with her lungs that causes her frequent coughing. She was nauseated and had an asthma attack in the night, so all in all, she is beat. And the nurses want her up and walking. We'll find the compromise somewhere, because Carolyn can barely keep her eyes open. Bob and Kit left for Washington this morning after staying with us for four and a half days, running errands, picking up food, and doing whatever was needed. Most of all, they bring a calm comfort that we needed. Barbara and Emily are terrific, and Carolyn has so much confidence in them. They'll be alternating the overnight shifts now that I have to return to Memphis.
    03-Apr-05 04:40 PM - Emily : Hi All,

    It's around 4:30 p.m. in Cleveland and we've moved.... not because of her condition---- we got a roomate. She is at least 80, sounded like a billy goat and was ALWAYS in the bathroom. Daddy, Barb and I made the executive decision for a private room. Mama was just moved down the hall to G100-27.

    Otherwise, she is doing about the same - VERRY tired and desperate for rest. Her neck is also very sore, we continually keep warm compresses on her. Hopefully, this will ease up by tomorrow.

    Her room looks very beautiful, we have received several GORGEROUS arrangements. They definitely spice up the place.

    Continue to keep the prayers and thoughts coming - hopefully tomorrow will be easier for her. Naturally, I'll keep everyone updated.

    Also, the football player, who had surgery before Mama on Thursday, was FINALLY moved up to the stepdown ICU. We are relieved for his family.

    Hope to see everyone's sweet faces on Wednesday or Thursday!

    04-Apr-05 11:27 AM - Tom : Carolyn had another tough night, sleeping a couple of hours before asthma and respiratory issues kept her up. Despite being weak, she took a walk to the waiting room and sat up there for an hour, which pleased the nurses. All of her test results look promising, and she seems to be making slow progress. As the nurses say, it's two steps forward and one step back, but at least you are moving in the right direction. Thanks for all the emails of concern and support. We pass every one along to her, and they never fail to buoy her spirits.

    04-Apr-05 12:03 PM - Tom : At 11 a.m., Carolyn's cardiologist told her that he expects to discharge her tomorrow. He wants her to spend the night at the hotel connected to the clinic (where we've been staying), and on Wednesday, she will fly home. The doctor said she is doing quite well, and he foresees no problems at all.

    05-Apr-05 11:52 AM - Tom : We spoke too soon yesterday, I guess. Carolyn's heart developed an irregular beat yesterday afternoon caused apparently by lack of potassium and magnesium. The cardiologist gave her an IV that corrected the problem, and this morning, he said it was still too soon to determine if she will be discharged today. He will see her again this afternoon and make a final decision.

    Carolyn continues to fight lack of sleep (she's sleeping about two hours a night) and a chronic cough, likely caused by the ventilator. She's extremely weak and exhausted, but continues to fight her way through all of this.

    Yesterday, she took a stroll around the floor (to prove to the nurses that she could), her pacemaker wires were removed (she doesn't have a pacemaker, but they call it that because the wires could be used in the event of a severe heart arrhythymia), she washed her hair, and until the irregular heartbeat, she seemed to be feeling and sounding better.

    As I said earlier, to quote the nurses, it's two steps forward and one step back. But you are walking in the right direction.

    05-Apr-05 05:35 PM - Tom : Well, it's official. Carolyn will be discharged tomorrow morning. The date was set back a day, because the cardiologist wanted to watch her for 24 hours after the irregular heart beat of late yesterday. He said this afternoon that everything looks good, and she should be ready to leave tomorrow. She will stay at the nearby Intercontinental Suites Hotel until her flight late Thursday afternoon.

    Carolyn seems stronger today. She has washed her hair, showered, put on her makeup, walked down the hall three times, and eaten dinner. All in all, it is amazing progress.
    06-Apr-05 11:28 AM - Tom : It's touch and go today, and apparently, it's more touch than go.

    Carolyn developed an irregular heartbeat last night at 6 p.m. which lasted about an hour. Her heart eventually regulated itself, but overnight, the irregular beats occurred periodically. This morning, the cardiologist said he would like to put her on beta blockers, but he can't because of her asthma. As a result, he has called for a respiratory team to look at her lungs, and he will make a decision late this afternoon about her discharge. He said he is not yet comfortable letting her go to the hotel or home until he has a better sense of what to do to remedy this problem.

    All in all, Carolyn is in good spirits, she took a shower this morning and she ate a good breakfast. She is just ready to be in her own bed.

    At any rate, we will not know anything more until this afternoon.

    06-Apr-05 03:32 PM - Tom : It's been a whirlwind day. But a good one.

    After questioning whether Carolyn could go home today, all of the doctors conferred and decided that her irregular heartbeat was related to some of her asthma medicine.

    As a result, they decided she could be discharged, and she will be on a flight home tonight at 5:45 p.m., arriving in Memphis at 6:45 p.m.

    She sounds strong and says she is ready to travel. Halleleujah.
    06-Apr-05 09:33 PM - Tom : This qualifies as "stop the presses" news.

    It is 8 p.m., and Carolyn is lying in her own bed. She is in great spirits, getting a little tired from the two-hour flight but doing wonderfully. She is still taking nothing for pain but Tylenol with codeine and only her shoulder is hurting. Her cats, Elle and Carlee, are so excited to see her and the sedative effect of cat fur is a medical wonder.

    We'll keep you posted.

    07-Apr-05 04:49 PM - Tom : Carolyn didn't get the sleep that she had hoped for, so she is tired but doing amazingly well. This morning, she walked downstairs and cooked her own breakfast, she showered and put on her makeup, and she did the exercises in the notebook from the Cleveland Clinic.

    During the day, she has taken the walks prescribed for her and additional exercises. She's not taking a nap in hopes of sleeping soundly tonight, and she will not take the Tylenol with codeine, because of a suspicion that the codeine is disturbing her sleep.

    We cannot say enough positive about the Cleveland Clinic, but as impressive as the surroundings were, the staff there was even more so. We did not know this level of caring and curing could still be found, and we cannot overstate the attentiveness, the responsiveness and the constant viligilance that the nurses displayed. In addition, there are no words to describe the talent of Dr. Lytle, the surgeon who performed the myectomy.

    As Emily likes to say, every thing works to a purpose and we are the luckiest people if we only look at life through that lens. If our insurance had covered Mayo, where we were headed, we never would have done the research that led us to Cleveland and to Dr. Lytle.

    Based on Carolyn's condition and her prognosis, it is all indeed miraculous.

    08-Apr-05 12:32 PM - Tom : In a word, Carolyn is doing fantastic. (Knock on wood.)

    She is exhuberant, strong and positive. Her only problem is that she is still having trouble sleeping more than a couple of hours, but consulting her well-worn PDR, she found that a side effect for one of her drugs is sleeplessness. This is being handled today, so hopefully, tonight, she will sleep.

    Otherwise, she is a marvel and seems to have more energy than the rest of us combined.

    09-Apr-05 08:01 PM - Tom : Carolyn continues to improve. She's spending much of the day downstairs. She's gaining energy and strength, and it's impressive to realize that 10 days ago, she had surgery. Her condition exceeds all of our expectations. She said to tell every one how much she appreciates the messages and the support. It has meant so much to her positive attitude to hear from so many good friends.

  • #2
    Thanks so much for the update, best wishes and prayers for a speedy and uncomplicated recovery! Linda

    Comment


    • #3
      Thank you Tom for the step-by-step synopsis of the Carolyn's myectomy surgery.

      This is very interesting and encouraging to know since some of us here are scheduled to have this surgery soon.

      I wish her a continued successful recovery and a healthy life.

      It is clear that your support and all of the support she had/has makes a huge difference. I truly wish Carolyn all the best.

      Well Wishes,

      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


      • #4
        Tom,

        Great news, I'm glad Carolyn is doing so well. I talked to her Sunday on the phone and she is so positive about how she feels. That is great. Tell her to keep in touch...


        Tigger1
        " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

        Comment


        • #5
          Hi Emily and family,

          I didn't realize that there was someone else - Caroline - who had their myectomy close to when I did. She must be 2 weeks out now?? I am now 3 1/2 weeks out of surgery. Is Caroline still very tired? I have made some improvement in my energy levels, but I'm still pretty tired a lot of the time. Its been SLOW progress for me. I had a number of complications though.

          Be sure to keep us posted on Carolyn's recovery.

          Cheers,

          Paul
          Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

          Comment

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