If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Waiting for a phone call

Collapse

About the Author

Collapse

ssllmom Find out more about ssllmom
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Waiting for a phone call

    My 18 year old is in the emergency room in Long Beach, and I am home in Northern California waiting for a phone call. Letting your kids go away to college can be ****. My husband has HCM (diagnosed 15 years ago, has an ICD) and is doing great. My daughter was checked annually for 10 years with no problems except an "unusual" EKG (ST-T wave inversions) and then 6 months ago she suddenly developed chest pain. The doctor ran all sorts of tests at Stanford Hospital, including a cath study. She has no thickening, no obstruction, but her heart is on the high end of normal for stiffness. She also has the HCM gene (don't ask me what kind - I have no idea). All of this was put together by her doctors and a diagnosis of HCM was given. She was put on verapamil for the chest pain - it helps some.

    She had to stop playing sports (which she loved and was very good at) and exercising the way she used to, and she went off to college. I contacted Lisa for names of doctors in the LA area (thank you Lisa - Dr. Shah was great) We took her to see Dr. Shah and now we are not so sure she even has HCM (altho she may eventually develop it) but is probably exhibiting the symptoms of mitral valve prolapse, which we also knew she had, but no one ever talked about other than to say take antibiotics before you go to the dentist.

    So I started investigating and it makes so much sense - the chest pain, the palpitations, even the ST-T wave inversion on the EKG. I'm surprised her doctors were so focused on the HCM.

    However, she is having some sort of arrythmia tonight and took herself the emergency room. I think (hope) it is only palpitations of some sort but feel helpless being this far away. So I am awake, waiting for a phone call telling me she is ok and heading back to the dorm.

    Anyway, I wanted to thank all of you for your stories. Even though this is my first post, I have read many of yours, and they have helped me and taught me and made me laugh (and cry). If anyone has a similar story I would love to hear from you.

    Sharon

    ps. Kelsey's friend has been calling with updates - palpitations stopped (naturally) by the time they hooked her up to the ekg, so now she is just in er limbo. She'll probably be there all night. I doubt she'll do that again.

  • #2
    Re: Waiting for a phone call

    There are some with HCM who have the gene and have minimal hypertophy some appear normal in term of thickness. These cases are rare and frankly are the most frightening case as they leave us with little understanding of what is happening.

    Your case sounds much like my own daughter who was in tears last night from chest pain. We live in a time were we are in some ways rewritting the medical literature thanks to our understanding of genetics and the systems of HCM. I wish we knew more... someday we will.

    I wish you daughter all the best - if I can do anything let me know.

    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


    • #3
      Re: Waiting for a phone call

      Sharon .
      My heart goes out to you as you wait to hear about your child . It is so nerve wracking each of my children ( 3 of them, 1 now out and 2 in college ) have left me feeling the same helpless way. My son is close enough for me to get to fast but my daughters have always been several hours away. I do not know what I would have done with them as far away as California. I probabably would have had to move with them , of course I would not but don't think it hasn't crossed all our minds on occassion , especially when they take sick.

      I empathize so strongly with you and have you and you daughter and your family in my thoughts and prayers.

      Please let us know how she is doing.

      Best wishes. 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


      • #4
        Re: Waiting for a phone call

        Lisa,
        Give Becca a big hug for me . I am so sorry she is having the chest pain. How frightening for her . It is hard enough to experience that as an adult . Poor little girl! She is so lucky to have you, but it must be so very hard for you as her mom to watch her go through this . A hug to you too , Lisa. I hope she is able to not have this happen so much.

        Blessings,
        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


        • #5
          Re: Waiting for a phone call

          Sharon, you are in my thoughts and prayers also. I hope that your daughter feels much better today.

          Lisa, I'm so sorry for Becca. Is she feeling better too?

          My own daughter comes to me telling me her heart "hurts" a couple of times a week. She is seeing a cariologist on the 27th to see if we can determine whether or not she's developing HCM. Her echo is supposedly clear, although they haven't gotten me any hard numbers yet. I'll keep you guys posted.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: Waiting for a phone call

            Reenie,
            You and your daughter need a hug too so you got mine. Boy we are having some moments here with the kiddo's. Hope you get some hard facts and answers soon.
            Prayers,
            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


            • #7
              Re: Waiting for a phone call

              Yep my heart goes out to all of you and i sure know what you mean about your kids my son came over here this morning to tell me about his ICD going off again this again yesterday, he got mad about something and it caused his heart rate to climb, he is going to the ICD clinic today to have it checked

              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


              • #8
                Re: Waiting for a phone call

                Another hug to you and your son Shirley. Don't worry I have lots more to go around if needed. I hope your son get's his mind put to ease , but as we can see he needed that devise.
                Take care.
                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

                Today's Birthdays

                Collapse

                Working...
                X