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.

too much to think about

Collapse

About the Author

Collapse

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

  • too much to think about

    Hello everyone. I want to say thank you foremost for this section. Let me fully introduce myself I come on this site but as I read everyone's posts it seems as if I haven't been here enough. Part of the thing was we just hooked up a new computer and since it's different from the other one lol I am still learning this one.MY aunt and I are both on the heart transplant list.
    My name is Kimberly Plaster. I've been on the heart transplant list since October 8,2004.I am 31 years old. I was born with nonobstructive hypertrophic cardiomyopathy. It is a very scary time for me and my friends and family tell me how positive I am. I am trying and trying but looking back at my family history does make me upset many times.All my dad's brothers except for one died from hcm problems as did my dad's mom when he was 14. Some of my dad's cousins have had transplants as well as my dad and my cousin. My dad is doing great he had his transplant on April 1 ,1995. It's hard to believe it has been 10 years. The year after his transplant he bought his first harley. He sold it and now we've been on His second harley. He's a biker dad and I am the passenger lol. I am waiting for the snow to melt and it seems like it never will we just got a big northeaster last night thru today and now they are saying it is going to last through tomorrow morning. Ugggggggggh that's New England for you lol. Ok enough of my getting off track Here My cousin died sadly. She had her transplant but only stayed alive for a few weeks after and I never got to say goodbye to her. I blew her a kiss through the window and waved to her. I found out on my way home from workwhen I was still working and able to work one night that she had died. I prayed to God that she would send me a sign that she was ok. Not long after that on my drive home a fox ran out in front of my car. I let it pass and it looked in my eyes stopped then ran across the road. I think that's one thing that has kept me going.
    I think one thing that is really difficult is this waiting game. Because the doctor and his nurse tell me to keep on my toes because it could or could not come at any time. They say it will take a very long time for me because I am a blood type B. Ever since I was young I thought about all the things I have wanted to do and luckily I find that I can do some of them after transplant. I want to scuba dive but they say no. They say snorkeling is ok so that's a plus. I have always wanted to do more hiking than I do normally they say yes to that and rock climbing which I've always wanted to do that's 2 pluses. I don't understand the no nos of not swimming in lakes. As they are beautiful and I love the clear water. At the meeting I was given a binder all about transplant I occasionally scan it but not fully because I become too upset and want to escape instead to a good fantasy book or go out in the world and enjoy myself while I wait. Is that wrong.I have big plans saying that once I heal and after transplant I am throwing myself a big celebration party as I think everyone who is on the boat with me should throw themselves a big celebration party along with me and then my plans are to take a vacation with my friends and whoever wants to go can and whoever wants to stay home can. That's what I told my friends.My friends ask me all the time when It's going to be and I say I don't know.Because none of us do and that's the difficult thing for all of us on this boat.
    Another problem that I am now dealing with this is my boyfriend. He's started thinking about the future and has become very distant from me lately.The issue is children if we were to get married one day far away from now. If I were to have them one day I would only want two but what are the circumstances with this transplant and children. I wondered if anyone knew. He's scared and if I can't have any I don't believe he wants to be with me.I've thought and said to myself this is a circumstance if I end up with him or someone else that will be a bridge we cross when we come to it. Well Thanks for listening everyone. I am sorry if I vented too much.
    Kimberly K. Plaster

  • #2
    Hi Kimberly. I'm glad you posted. This is such a scary time in your life and it looks like you have a pretty good attitude about it all. I can't blame you for not wanting to totally immerse yourself in your binder. I'd want to escape too. The grand celebration sounds like a lot of fun, though! I'm sure you'll have lots of people who want to be there for you when you get to that point.

    As far as your boyfriend's attitude about children goes, it's up to you guys to work it out, but I hope that he sees the good in you with or without children. Many of us have been lucky to be able to bear our own children. Others have been blessed with adopted kids. And of course, some of us have chosen not to have any at all. It's a very personal decision and I hope he doesn't hold it against you that you may not be able to bear your own after transplant. I honestly don't have any information at all on whether that would be a possibility or not.

    I want to wish you the best of luck while you wait as patiently as possible.

    Reenie
    Reenie

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

    Comment


    • #3
      Kimberly, I also want to wish you the best. I'm glad you have that fox to cling to. Seems like we all find something to help us thru, one way or another. Vent when you need to, we all care. Please keep us posted. Linda

      Comment


      • #4
        Hi Kimberly

        I to am waiting to go on the list, i'm hoping the Dr. I saw up North is going to help me i feel i'm at a deadend her any more but i wish you the very best and good luck to you and your mom

        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


        • #5
          hi kimberly I can relate to you when you talk about wanting to escape into a book or in nature. I feel the same way often. you sound like a very nice person.I believe you will have your party and many more great experiences.just hang in their and dont give up, just tackle one day at a time.Im praying for you God bless mike OB.
          One day at a time.

          Comment


          • #6
            Kimberly,

            We have pm'd before. I am 27 soon to be 28 this month and I'm also a non obstructive hcm waiting for transplant since September. I understand all of your feelings about the waiting. I do have four adopted children. My husband and I did foster care and eventually adopted. I feel like my family and I are very stuck in this waiting game and it does get frustrating. I keep my faith about me and try my best to put it all in God's hands because only he can save us and preform our miracle. If your boyfriend loves you then he should be up for whatever your lives would throw you. And even if not for needing transplant the docs may not have wanted you to get pregnant due the risk on your heart. I have read a lot about pregnancy after transplant. It's possible to have babies after transplant but it does risk your new heart and they don't know what effects the drugs we have to be on will have on the baby. My husband and I have at this point anyway decided to not try to get pregnant plus just because there is a new heart there is still a 50/50 chance of passing on the gene. My husband gets distant at times but we try to keep the lines of communication open so we survive this. And may I say adoption has been a wonderful gift for us and we couldn't love our own flesh and blood any more then our children we have. There are so many children that need homes and what a gift you can be to them as well as them to you. I hope this gives you some perspective and feel free to pm me anytime.

            Take care and God bless!

            Beverly

            Comment


            • #7
              I am so sorry I am so late in responding to these posts but have had a sinus infection and needed to clear my head (literally) before I write. I do know Kimberly where you are coming from on this waiting for a transplant. As you know from your father and other relatives it does come. My call came when I least expected it. It will be one year for me on Mar. 19th. Although, I am older (58) than you and Beverly I was dx'd at 28 with Obstructive HCM and had a myectomy at 35. Mine too is familial. I did have children in my 20's and thus far they are fine. I do know of a heart transplant patient who I met on my journey into transplant who had her transplant 16 years ago now. She was the first person in the US to go on and have 2 children. They are 2 very healthy boys. I do know that it was not reccomended she have children but things happen and she did. I am not sure what the guidelines are today. Hopefully, you and your boyfriend can work this issue out. It is a scary time for those of us going through all of the transplant issues but also so for our caregivers. They do not understand it all and do not quite know how to deal with all the emotional issues. I know my husband was as scared if not more so than I was. If you have any questions please do not hesitate to pm me. You are in the roughest time right now. Waiting!!
              Midge

              Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
              ICD&Pacemaker 1996
              Heart transplant March 19, 2004 @ Mayo Rochester
              Mom of Kaye.

              Comment


              • #8
                I just want to say thank you to all of you. You all seem like good wonderful people. Tomorrow I go into to see my Defibrillator doctor and for my monthly checkup to my cardiologist for my monthly checkup till transplant. My aunt who is waiting for transplant too her,her husband, My mom and I are going to a talk on heart failure on April 2nd at Brigham and women's. I am thinking about attending the hcma session this year too but not definite yet. Thanks to all of you for listening.
                Kimberly K. Plaster

                Comment

                Today's Birthdays

                Collapse

                Working...
                X