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Caitlyn's surgery


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  • Caitlyn's surgery

    Caitlyn, our brave and beautiful 14 year old, did indeed have her septal myectomy at Tufts in Boston on Tuesday of last week. I wanted to wait until she was home and feeling better to post something. She came through with flying colors in every way! Dr. Rastegar did the surgery and immediately after the surgery Marty Maron told us how very pleased he was with the results. She was in CTU for approximately 48 hours and then to a private room until this past Monday, and then flew home yesterday- exactly a week after this major surgery. Caitlyn's resting gradient had most recently measured in the 130's and 140's. Her gradient is now at 0!!!

    Day two and three seemed to be the worst for her, with alternating pain and nausea. By Friday night she was feeling a little better, but was sleeping almost constantly and her red count was low so after considerable discussion they decided to give her a unit of blood, which really seemed to help her turn the corner. Saturday she was more alert and was able to take a couple of walks down the hallway. Barry Maron was in Boston for a lecture that day and with Marty made a short surprise visit to her on Saturday evening. Sunday her appetite began to pick up and she was feeling less nausea so she was finally able to watch a movie and the Oscars and start catching up on the volumes of email she had received! Another echo on Monday confirmed the reports from the surgery and so she came on home a day earlier than originally scheduled. She's up and about and looks absolutely great. I know it will take some time for her to get her strength back, but we are absolutely amazed at her recovery thus far. Everyone always says how kids are so resilient and tougher than we give them credit for, but Caitlyn has earned my undying admiration in how she faced this scary event with complete grace and dignity.

    Our experience at Tufts could not have been a more positive one; certainly in terms of results, but in every aspect with the doctors and nurses we came away grateful and awed by the amount of care and concern shown to us all. Of the three centers that now perform myectomies regularly (Mayo, Cleveland, and Boston) we actually had many more ties to the other two as we had live and schooled in Minnesota and Cleveland, but our decision to go with Boston because of it's smaller size and primarily because of our relationship with Dr. Maron was confirmed in every way.

    It was wonderful meeting Felix and his wife Sandy and I hope his recovery is going well. It was rather an interesting coincidence to have two Atlanta area families having the same surgery at the same place within a week of one another. I'm sorry we missed meeting Pam; I didn't realize there was another HCMAer there at the time!

    Thanks to all for the prayers and good wishes sent Caitlyn's way; they're definitely working!

    Paul and Elizabeth

  • #2
    Re: Caitlyn's surgery

    Elizabeth and Paul, I'm so happy for you and Caitlyn. Thanks for the update. I will continue to pray for a speedy and uncomplicated recovery. Linda


    • #3
      Re: Caitlyn's surgery

      Paul and Elizabeth,

      I am so happy to hear how Caitlyn is doing. I was praying for her and you two last Tuesday and beyond. I was talking to Lisa that day and she told me without naming Caitlyn that she was as we were speaking most likely just coming out of the surgery. I'm sure she will continue to feel better and get on with being a wonderfu 14 year old!

      I am flying to Cleveland next week to see Dr. Lever about having a by pass and a myectomy.

      Give Caitlyn our best wishes and the prayers will continue.



      • #4
        Re: Caitlyn's surgery

        Paul and Elizabeth,

        I'm so happy to learn of Caitlyn's progress and hope that there is nothing but continued improvement from here on in. It's such an awful thing for a 14 year-old to have to go through, but it sounds like she is doing great! She's pretty well blessed to have parents such as you to see her through this

        Please continue to keep us all posted on her progress.

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


        • #5
          Re: Caitlyn's surgery

          I am so thrilled that caitlyn is doing so well. I am sure she is so happy to be home with her family and friends and enjoying this wonderful atlanta
          weather. Kids really do bounce back quickly. their activity level and
          appetites come back fairly quickly it seems.

          felix has hit a few snags along the way, but is walking a bit more
          every day. The biggest one now I dont know to describe, other than
          the "sorta cough". he wants to cough, but cant quite do it, so he has
          trouble talking at times. EAch day it gets a bit better though. Also,
          since we have been home he has not really taken much in pain meds.
          Its nice that not much pain is involved at this point.

          i am sure that caitlyn cannot wait to get back to doing things with her
          friends and returning to school. it will happen quicker than you think!

          I really enjoyed meeting both of you when we were up there. I am
          glad our paths had crossed. I wish I could have met caitlyn as well.
          maybe we can get together at some point. (our 5 year olds can
          play together)

          once again, I am so happy that everything worked out!


          p.s. just curious, does marty take after his father ))


          • #6
            Re: Caitlyn's surgery

            Paul& Elizabeth, So happy to hear the great news about Caitlin and her progress. It is so very much to go through and as a parent of three myself I shutter to think how I will deal with it if my children end up with the same and have to go through what I did. I am sorry I did not get to meet you. I did not want to intrude as it was the day of surgery for Caitlin and probably not a good time to meet. My thoughts and prayers were with you all. I agree with you NEMC is a great place to go and we have all been so fortunate to have such a great team looking after us. I go there next month with my oldest to have her 1st real screening she is 24 and having more symptoms then I care to think about. The other 2 age 23 an 17 also have symptoms but it seems the oldest is struggling more at this time. They will be tested in May. I say it is her 1st sreening because all the priors on the 3 were done where mine was 1st done 3 years ago and we had all been told that we were normal . So you can see that my concerns are warranted and I am happy to have NEMC and especially Dr. Maron so close. I don't think there is a thank you big enough that I could give to them all. For now give Caitlin my best wishes and tell her to take it easy and not get down when some days are not as good as others. It will all come together slowly and in time and she will begin to see more and more improvements everyday. 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


            • #7
              Re: Caitlyn's surgery

              I just wanted to add my own congratulations for Caitlyn's success with her surgery. I hope she continues to get better fast!


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


              • #8
                Re: Caitlyn's surgery

                Paul and Elizabeth,

                I'm very happy to hear how Caitlynn is doing. I have been there with both my children and know what a very stressful and worrisome time it was for the parents. I'm so glad that she did so well and had no complications. She should take it easy for a few weeks, try not to let her get going too fast. I know these kids are hard to keep down. I remember having to keep my kids home for almost a full month before they were allowed to go back to school and do all the activities they wanted too. I hope Caitlynn keeps doing well and is "back in action" soon.

                Take care,
                Michelle - mom to Krista and Tyler both HCM
                Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                Tyler surgery: 1/98 myectomy


                • #9
                  Re: Caitlyn's surgery

                  Congratulations. I'm glad everything went well. I can't imagine how worried you were. My kids are being tested in June and I PRAY WITH ALL MY HEART that they don't get this disease. All the best Caitlin - Way to go!


                  • #10
                    Re: Caitlyn's surgery

                    What wonderful news that Caitlyn is doing so well! I know first hand how hard it is to watch your child go through this, and I have also seen how brave they can be! These kids are truly an inspiration! My best wishes to your whole family, and prayers that Caitlyn continues to recover quickly!
                    mom to Andrew(HCM) 21 years old
                    Diagnosed \'95 age 5
                    Myectomy \'96 age 6
                    ICD implant \'99 age 9
                    First ICD shock (X2) \'04
                    ICD replacement surgery \'05 age 15

                    *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)