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Let her rest in peace


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  • Let her rest in peace

    Hi my name is cullen, I am "Quincle"'s brother. On 07/21/04 my mom died from hcm and my sister told me about this place and was wondering if I could get a little support because I havent been able to eat or sleep much.

  • #2
    Re: Let her rest in peace

    I was wondering... does anyone know how I can get checked?


    • #3
      Re: Let her rest in peace

      Hi Cullen. Welcome to the HCMA. We're glad you're here. The way to get checked is to go to the doctor and get an EKG and an echo. The echo is the ultrasound of your heart. The cardiologist will read the measurement numbers from the echo and read the EKG to see if you have HCM or not.

      Rachel said you're either 12 or 13, I forget which. My own daughter is 12, will be 13 in November. She just had her check on Monday and we don't have the results yet. Even if she is clear this time I will have her checked again next year. It's best to be tested every year until you either are shown to have HCM or til you are mid-20's. If you are still clear at that time you can be checked every 4-5 years. I hope this information helps you.

      I'm so sorry for the loss of your mom. I know you're at a very difficult time right now and we're here for you if you want to ask questions or just vent at the unfairness of it all. We understand and many here have lost loved ones. In fact, that's why the HCMA was founded. Lisa Salberg lost her sister Lori to HCM in 1996 and this site is the product of that.

      Please encourage your dad and other family members to check us out. We're here for information as well as support. Take care of yourself.


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


      • #4
        Re: Let her rest in peace

        Hi Cullen.
        I am so sorry that you lost your mom. I wish there was more to say, but there is not. I lost my wife 5 1/2 years ago so I know the pain is deep. I am sorry and will pray for you and your family. Take care of yourself.


        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness


        • #5
          Re: Let her rest in peace

          Dear Cullen,
          There is not much worse that any of us can think of than losing our mother at your age. So, we understand why you can't sleep or eat. I know that your mother is watching you and longs to see you find comfort. I was a little over twice your age when my mother died suddenly, as we now realize from this disease, and even at that age I had trouble eating or sleeping. My daughter recently told me that she was terrified that I would die when she was your age, so somehow she understood the possibility even though I had not been diagnosed. So, we understand. Please let us help.

          You posted this on the GodSquad forum, so I think maybe you know God. He wants to comfort and protect you from harm especially at this terribly difficult time. We will talk to Him for you, if you feel unable to talk to Him for yourself. Please feel free to let us know what you need and how we can help.



          • #6
            Re: Let her rest in peace


            I am so glad that you took your sister's advice and came to visit this site. There are many people here who care about you and what you and your sister have gone through.

            It is so hard to lose your Mom, (I just lost my Mom to HCM 2 1/2 years ago, it was hard for me, and I'm now 40). To lose your Mom at such a young age is really a tough thing. I wish I could make it better for you and take the hurt away. I know that nobody can do that.

            But feel free to visit this site, talk about your feelings, ask questions, and learn about HCM. Like I said, there are so many people out there who are ready to talk to you, and we all want to be there for you and your sister.

            I will be watching for you on the HCMA.

            God Bless you, my young friend. Take care.



            Remember, there are no stupid questions.

            Also check out the "Hang Out". It is a forum for young people to talk to each other. Don't be afraid to try it out. It is relatively new, so even if if doesn't seem to have a lot of posts yet, you can still find young people like yourself to talk to.


            • #7
              Re: Let her rest in peace

              Cullon, I'm so sorry for the loss of your mother! You have my deepest sympathy! I am glad you found your way here, this is a great place, you should be able to find TONS OF SUPPORT here and TONS OF GOOD INFORMATION and GOOD FRIENDS. Ilost my only son 9/29/00 not long after his 6th birthday due to SD, hcm. SO if you ever need someone to talk to, I'm here too. I wish you well, talk to Lisa she can help get you pointed in the right direction!


              • #8
                Re: Let her rest in peace


                I lost my dad a few years ago, so I know a bit about how you are feeling.

                It is normal to not be able to eat or sleep for a while right after you lose someone that close to you, but please remember that your mom would want you to eat. I find that soup always goes down even if I think I can't eat anything.

                There is a whole section of this web site for people under 18 called The Hang Out--you should post there, too.

                To get checked out, please see your regular doctor and ask to be sent to a cardiologist for an echocardiogram. The echo is a painless test --it is the same test they do to look at babies before they are born, but they look at your heart-- and it will show the doctors your heart walls, to see if they are too thick or not.

                I wish I could give you a big hug. People will say all kinds of things about how you or should not feel or what your mom would or would not want (see, I did it too!) but the most important thing is to be true to yourself and feel whatever you feel when you feel it. Don't hide from your emotions or ignore them becuase they are painful; they will just come back worse later. This may not make any sense right now, but just trust me on that one.

                You will be angry with your mom---that's normal and ok. You may not be angry now, maybe not for a long time, but it will probably happen. Don't worry about it --just be angry for a while and it will stop. But you can't stop being angry if you never let yourself get angry in first place.

                The PM button at the bottom of posts allows you to send a private message to that person. Feel free to use it if you want to share anything you don't want to post in public.

                take care,



                • #9
                  Re: Let her rest in peace

                  I'm so sorry that you've lost your mother. I'm glad your sister suggested you join this board and how brave you are for posting. Eating and sleeping will be something you do in a while. Don't push yourself; just acknowledge how you feel. I'm sure you are lost and scared but know that you are not alone. Please keep us posted as to how you are feeling.


                  • #10
                    Re: Let her rest in peace


                    I know how you feel i lost my mom years ago, i was a young woman, but it is hard at any age, just know your mom is watching over you and your family, just because you can't see her does mean she isn't there and she is also in your heart, I hope you this helps a bit.

                    I have lost a brother to this disease and his daughter also just 6 months ago for my neice, so please have your dad call Lisa her number is at the bottom of this page and she should be in the office today, you take care and if you need anything please feel free to write to us or private message one of us and know you are not alone

                    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


                    • #11
                      Re: Let her rest in peace


                      Welcome to the HCMA. I will make a few suggestions regarding getting some "support". You have been though a great loss, you are also still very young and we all know it is "unfair" that you have had to endure this loss. You will have to give yourself time to cope with your loss and let yourself be in a pain, grieve, be angry, accept what has happen and then take the hardest step of all - take all of these feelings and let them make you a stronger person and continue to live your life with ALL of the lessons your mother has taught you. Let people help you - at home and at school - sometimes it may seem that they have no idea what they are talking about or how you feel - but LISTEN to them they will each give you little clues as to how you can feel better - remember NO ONE has THE answer - it is a process not a word. Your mom will be with you every minute of every day for the rest of your life. She loves you and will watch over you and help you find the right path.

                      Let your mind and body rest - try to eat well, even if you are not hungry try to eat health food - believe it or not it will help you feel better sooner. Let yourself cry - or not which ever you wish. Talk to your family about your mom - dont be afraid to talk about her - dont be afraid to talk to her.

                      Many of us here have lost people we love dearly - we know it is a hard road - but you need to know you are not alone and there will be a time when you will be happy again. Dont be afraid to laugh and smile and have a good time - your mom would want to see you happy.

                      Your aunt knows were to go for medical help -talk to her and talk to your dad. They will take good care of you.

                      We are always here for you. Stay strong and know you and your family are in my thoughts and prayers.

                      Take care of yourself,
                      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)


                      • #12
                        Re: Let her rest in peace


                        I am so sorry to hear about your mom. Everyone here has been thinking of you and your family since your sister posted the news to us. Your mom would want you to take care of yourself, so please try to eat what you can and stay strong for her, okay?

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


                        • #13
                          Re: Let her rest in peace

                          thanks for your help at this time,ttyl.


                          • #14
                            Re: Let her rest in peace

                            Cullen, you and your family have been in my thoughts and prayers. Please keep us posted as to how things are going. I hope getting back to school helps you. You will be around many more people who care about you and want to help. Take care, Linda


                            • #15
                              Re: Let her rest in peace

                              Cullen, I am sorry about your tremendous loss . Losing a mom is got to be one of the hardest things that can happen to someone. I am glad that you posted here and that your sister encouraged you to do so . Hold on tight to each other during this rough time and know that we are all thinking about you and your sister and that we are here anytime you need to check in.
                              Bless you , 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


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