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God bless my Mom

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Quincle My real name is Rachel, but my friends call me "Quince" or "Quincle". Find out more about Quincle
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  • God bless my Mom

    Hi everybody. My name is Rachel. I'm fourteen and I live in Minnesota. On July 21st my Mom died of HCM. I'm still trying to accept the fact that she's gone because we had no idea she had HCM. I'm worried now because my aunt, my mom, and other members of my family have HCM and now I'm afraid I have it. My 12 year old brother just got checked and they said the results were unclear and that he should come back when he's 15. I checked on here of what the symptoms are and I have two of the four. I have blackouts/light-headedness sometimes and chest pains always follow-- it's almost as if something is stabbing me and stopping my breathing-- so I don't know what to do... any advice??

  • #2
    Re: God bless my Mom

    Dear Rachael, I'm so sorry to hear about your mother. I know this is a terrible shock to you and your entire family. It is made even more difficult for you by learning that others may have the same condition. You are very smart to start trying to learn as much as you can about HCM. If you haven't been checked yourself, you need to be, just as everyone else in the family (on your Mom's) side need to be checked. Does your family know you have found this site? Please talk to them about it and see if you can, as a family, arrange a time to call and talk with Lisa in the HCMA office. You will find a lot of support and answers here on the message board and in reading thru the web site. I know this is a very difficult time for all of your family and each person will be ready for more information at different times at their own pace. Please know that we are thinking of you all and praying for strength and a sense of comfort as you move forward thru each day. I hope you have lots of friends and family helping you, supporting you each day. Linda

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    • #3
      Re: God bless my Mom

      Hi Rachel
      I am so sorry to hear about your loss and family members that have HCM. With the background in your family, I would definately get checked. I live in Minnesota, too, and I have been going to the Mayo Clinic in Rochester, MN for 4 years now. They are one of three places in the US that is well known for diagnosing and treatment for HCM. You must be very confused as to what to do next? Where to go? Who to talk to? You said that your aunt and other members of your family have HCM. Please tell them about this site and read, read, read. I'm sure your family will have many questions and probably unclear of posts you read. Lisa is a woman of great knowledge. PLEASE call her. Her phone number is listed on the bottom of this page.
      Where in Minnesota do you live?
      Please take care and keep in touch.
      Esther

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      • #4
        Re: God bless my Mom

        Hi Rachel. We're glad you found us. I wanted to comment on your brother's test. If his results were unclear and he's 12 he shouldn't wait until he's 15 to be tested again. They should test him again next year, at age 13. Yes, please share this site with your family. They may not want to research online, but I assure you that we are for real. We know the pain and suffering many go through with HCM, but we also know some success stories.

        Reenie
        Reenie

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

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        • #5
          Re: God bless my Mom

          I am sorry to hear of your loss. I am sure you mom is very proud of you and your very mature manner you are seeking infromation to help yourself and your brother.
          You should have an Echo and your brother should have a repeat echo in 6months max. Where in MN are you? There are 2 specialty centers in MN and I would be happy to assist you in setting up appointments.
          Feel free to call the office or have your dad/guardian call.

          By the way my daughter LOVES Avril Lavigne.

          Be well,
          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


          • #6
            Re: God bless my Mom

            Hi Rachel,

            This is your aunt and I am so very, very proud
            of you. This is the place that I used to tell you
            about for a long time and I am so happy that
            you decided to find information on the heart
            condition that runs in our family.

            I love you and your brother more than words
            could ever describe.

            Janice
            Janiceland

            Comment


            • #7
              Re: God bless my Mom

              Hi Rachel,
              I am so sorry to hear you lost your mom but know she will always be in your heart. What a wonderful daughter you are to join this site and learn as much as you can to take care of yourself and your brother. Your mother is proud of you so give yourself a hug from all of us and know that we are here for you.
              Nancy

              Comment


              • #8
                Re: God bless my Mom

                Hi, Rachel,
                You are a very brave and wise young lady! I know that all of us are very proud of you. More importantly, we know that your mother is watching you with enormous pride and joy that she was able to raise such a wonderful daughter in such a short time.
                All of our hearts ache for you and your family. Please know that we will be praying for you.
                We encourage you to get checked by a specialist in HCM, if you haven't already. The advice for your brother to wait until 15 to get checked again sounds incorrect to me. It seems that both of you should be checked with an echocardiogram each year through your teen years.
                Rhoda

                Comment


                • #9
                  Re: God bless my Mom

                  Hi Rachael-

                  My deepest sympathies to you and your family. I know that your Mother is watching you from heaven and will guide you through your life. Please follow everyone's advice and call Lisa and get checked. You're a very brave lady and your mother would be so proud of you!

                  Ange

                  Comment


                  • #10
                    Re: God bless my Mom

                    Dear Rachel,
                    My heart aches for you dear one. You have so much going on in your head and your shoulders must ache with the weight of the world. Please know that you have found one of the most wonderful support systems ever! This message board and all the people that post and read will be praying for you, your Mom in heaven, your brother and all the family that is whirling with this sudden tragic event, and new found information.

                    My son, Anthony, died suddenly at age 20 and with the new support and knowledge that we have found, we are saving lives. Someday you will be able to look back, as I do today, and Thank your Mom for her sacrifice and know that she too has saved lives..including yours.

                    You seem very mature and strong willed. With the new knowledge you find with HCMA and support of your family you will make it! People live long lives with this condition. Please don't be afraid to speak up and get the help you deserve in your medical treatment. Lisa at the HCMA office will help your family get in touch with some of the most wonderful leading HCM doctors in the world, right there in Minnesota!

                    May God continue to bless you and your family through this sad time. All the angels around you are protecting you and giving you strength...including your Mother!

                    Blessings,
                    Sharon

                    Comment


                    • #11
                      Re: God bless my Mom

                      Hi Rachel, I am so sorry to hear about the lose of your mother, I'm sure she would be proud of your trying to inform yourself with info. to better deal with hcm. I do think (you and) your brother should go back to be retested alot sooner, like lisa said. I lost my son to hcm in sept. 2000 after his sixth birthday, also I lost my father when I was a baby to the hcm. I know it's hard to deal with, just know that in heaven all our loved ones are smiling down on us. I too have hcm and I also have a daughter, so far she's been looking good, besides a abnormal ekg, matter fo fact she goes next week to be retested again. The childrens cardiologist wanted to test her like every 5 years, but I insist she be tested yearly. Anyways I am glad you found your way here to the hcma and I'll be looking foward to reading/answering your post in the future.
                      Jen

                      Comment


                      • #12
                        Re: God bless my Mom

                        Rachel,

                        Our thoughts and prayers are with you and your brother. Your aunt has pointed you in the right direction. She sounds like a good person to have by your side. I see she was diagnosed with HCM a few years ago.

                        We are all proud of you for having the courage to ask for advice.
                        You say you don’t know what to do? You have already taken the first step by joining us here at this web site.

                        You are a very bright young lady. HCM does not need to be scary. Don’t be afraid to ask questions, and please don’t let the answers scare you.

                        The next step, & maybe your Aunt Janice can help you with, is to maybe talk to Lisa at the HCMA office. It would be best if you call with your aunt.

                        I will say a pray tonight for you, your brother and your mom.
                        (by the way, what are their names?).

                        Stuart
                        Cleveland Myectomy Club
                        August 31, 2004

                        Comment


                        • #13
                          Re: God bless my Mom

                          Rachel,

                          I am so sorry about your Mom. Keep reading and participating in this website. There is a lot of help for you here. I just want you to know that my heart really is aching for you and your family. It's hard to lose your mom when you are so young.

                          God Bless you, dear young soul. I wll be watching for you on the HCMA.

                          Debbie

                          Comment


                          • #14
                            Re: God bless my Mom

                            Rachel,

                            I forgot to mention that there is a forum for young people on this site, too. It's called the Hang-Out. Check it out, there may be some good support for you there, too.

                            Debbie

                            Comment


                            • #15
                              Re: God bless my Mom

                              Rachel,

                              I'm so sorry to hear about the loss of your mom. There's not much i can say that hasn't already been said, but please know that your family is in my thoughts and prayers.

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

                              Comment

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