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purple_ness1
purple_ness1
Barely Heart
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  • sick of watching people die

    Hey

    hows it going ?

    i meet a girl a while ago who i became friends with who was waiting for a heart ,i found out she passes away the other day she was only 18 , its realy sad
    i hate been stuck in this medical world doctor hosptil and all the rest , you meet so many people that dont make it

    my grandmother and aunty both passed from HCM , im sick of watching people die
    it like as long as im stuck in this medical world im never going to stop seeing people die, you meet so many nice people but they get sick and not all of them make it its just doesent seem fair

    sorry went on a bit

    Margi
    Margi*
    http://margi-inskeep.blogspot.com
    Forever Young

    I was diagnosedwith HCM at 6.
    Went into Atrial fibrillation so had a ICD put in at 16
    Went into Heart failure at 17
    Got a heart transplant at 21(2009)

  • #2
    Re: sick of watching people die

    Margi.

    I am sorry you lost another person in your life. I know it is hard I (I have also lost people). My prayer for you is that you will find comfort in those who love you.
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

    Comment


    • #3
      Re: sick of watching people die

      Margi, I know it is hard to watch people you love die. Please know you have received this heart and can show others about transplantation and how it works. I am sure you are touching the hearts of those who love you by the life you are living.
      Midge

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

      Comment


      • #4
        Re: sick of watching people die

        This morning as I was walking the dog a thought came to mind.. I did not like it but it was there.... all of the people who were at my wedding nearly 20 years ago... how many are gone today. 2 (3) lost to HCM my sister and father (my uncle did not come to the wedding but died within weeks)- my best man to cancer at 28 (George - God I miss that guy!) my grandmother and aunts to old age/cancer my father in law to cancer his brother to heart failure ... then I stopped myself and said... but how many people are HERE because of them and isnt death just a part of life.
        While I miss them all, many went too soon - I know that illness and disease are part of the human experience... but I know I am going to make the best of what I have been given and help you all do the same.
        Sweetie - I am sorry you lost your friend and others but life is simply to short to spend it looking at what we have lost - please grieve for your loved ones - then hold the memories in your heart and get out there and live your life!
        With much love and a big hug!
        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


        • #5
          Re: sick of watching people die

          Hey there Margi
          I learned a long time ago that when someone you love dies, you need to ask what they would truely want for you. The answer is..... for you to live, laugh and love. I know it's hard, but you can honor them by doing what they would wish for you.
          So go ride a roller coaster, flirt with a cute boy, do well in school, volunteer at a homeless shelter in memory of them. You'll feel better !
          I know it can suck, but don't let it run your life. You are so young.
          And check with your Doc about that roller coaster thing. ha
          peace
          mariab

          Comment


          • #6
            Re: sick of watching people die

            MariaB offers some excellent advise. You've been given a second chance, embrace that gift and share it with others. (and do check with the doctors about those roller coasters). I lost my mom & sister about a year apart, Yes it hurts, but I learned to remember the good times and honor their memory.
            Marc
            Diagnosed @ 48
            Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
            Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
            AICD - Valentines Day '08, Spark Plug replaced 11/14
            After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
            Quietly going insane . . .

            Comment


            • #7
              Re: sick of watching people die

              Maria said it better than I would have. Watching others die is hard, no doubt about it. But enjoy your life -- it's the best way to remember the people you've lost.

              Gordon
              Myectomy on Feb. 5, 2007.

              Comment


              • #8
                Re: sick of watching people die

                Margie,

                My heart goes out to you. My daughter was in a children's hospital on a major illness floor when she was 5. Several of the children she got to know died over the next few months. I worried about a 5 year old dealing with this, but I know that it is in some ways even harder for you because you are able to understand the pain of all the friends and loved ones, whereas she was not.

                However, I also hope you will get at least a little smile out of what happened a few weeks after one of my daughter's friends died. When she was 3 or so we had had an aquarium with tropical fish. Inevitably, some of them died, and we flushed them down the drain. So when we moved to another city, we bought a pair of gerbils because we figured they would make better pets for her. Shortly after her friend had died, one of the gerbils also died. My daughter said, a little sadly, "Will we flush him down the drain, too?" Suddenly my heart sank as I realized that she must have pictured her friend being flushed. So I said, "Oh, no! We only flush fish! We will have a funeral for Cinnamon (the gerbil's name)" So that night when my husband came home we had a formal funeral with a shoe box casket and a stone marker and prayers and the works. At the time it was really painful for me as I realized how much she had had to deal with at a young age, but she weathered it, and now it makes me smile to think of it.

                I will pray that you, too, will be comforted and go on to smiling memories of good times.

                Rhoda

                Comment


                • #9
                  Re: sick of watching people die

                  Margi,
                  I'm sorry for your loss.
                  Thinking of you,
                  Theresa
                  Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                  Comment


                  • #10
                    Re: sick of watching people die

                    Margi-
                    I think you have gotten a lot of replies because this is an issue that touches so many in the HCM community. Being suddenly and irreversibly thrown into the medical world (with all of its pain, hope, despair, and hugely frustrating lack of control) is something lots of people here understand.

                    It is a huge transition going from being essentially non-medical to totally immersed in the medical world. One of the very tough things that tranplant recipients have to accept is that you are forever tied to the medical world, and it is now a world you can never walk away from for long. Most healthy folks don't realize what a gift that is. People like you who have endured long illnesses and hospital stays have a very different perspective on what "the medical world" means, compared to those who have only annual check ups.

                    The other very tough thing as you point out, is that being immersed in the medical world, we have all met wonderful people who have serious illnesses. For every hopeful story, there is a very sad one. You have to take what you get --- I know you know that. And it is not fair - and none of us minds reading your vent - because it is not fair. You deserve to vent.

                    I think seeing the kids that die waiting for a transplant just reminds us what a gift it is to have a successful transplant. All the more reason to try to keep you and that new heart as well as you can, and as others have said above, enjoy life as much as you can.

                    Comment


                    • #11
                      Re: sick of watching people die

                      Emily's mom said it well I will just add that I am thinking of you and do also understand.

                      I do not think that I will ever be the recipient of a transplant as many of us will be so closely tied to medical facilities and probably always be seen every few months having one new pill added or some new method tried for the rest of our lives but, we may not be bad enough to meet the criteria and get the gift of a new heart... or there may be certain things that prohibit our being a candidate. Some will be actively listed and waiting but never receive in time their gift.. many more may be challenged daily in living with HCM or other heart ailments having not enough deterioration or the criteria to be listed.

                      This is very difficult and part of having a chronic heart condition as we are forced to deal with unanswered uncertainties about ourselves and some friends here and ones we meet who are waiting. Over and over we even see people leave us here on the message board after they have become stead fast cyber friends over many years winning a special place in our hearts. It is not fair and it is a bitter pill to swallow. I guess one thing we can each try and do is to tell our friends and family how important it is to donate all organs and that goes for us as well. Our hearts will not be used but, certainly there are many gifts that are viable in each of us if we should pass away.

                      I am sorry for your loss.

                      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


                      • #12
                        Re: sick of watching people die

                        Hi Margi
                        Sorry I'm so late replying to your thread, but I just returned from a 2 week vacation in PA and your thread brought many memories to me.
                        After I became a mother I always said if something happened to either one of my children (I have 2) that I didn't want to live either. When my son was 15 I lost him to a massive heart attack (he had HCM, unknown to us) and I felt "how can I go on without him?". As a matter of fact I was suicidal for some time after his passing. Then I thought of my daughter. I HAD to go on for her. Although I lost one child, I still had another that needed me. So, remember although losing someone whether they are young or old is tough, there is always someone there that needs you. The memories that I have of my son are wonderful, the love we share as mother/son is still there and so is my daughter.
                        HUGS to you, my dear.
                        Esther

                        Comment


                        • #13
                          Re: sick of watching people die

                          I know how you feel. We had a streak on the board where we lost a few folks in a short period of time. I was quite close to most of them and I just couldn't handle it. I had to take a step back. During that time the possibility of transplant was also on the table for me as well. So, not only were my friends dying I wasn't doing so well myself and I had lost my job with health insurance.

                          I was down right scared. So, I took a step back from everything including this board. I focused on the positive things in my life. I then realized life was worth living even though it wasn't the life I had in mind. I went out and started hanging out with friends again, I got that motorcycle i was drooling over, and started just having fun.

                          If you get over here to Orlando someday we will go to Universal ride Rip Ride Rockit, scream down I-4 on my motorcycle, and go to Down Town to have a good time! Deal?

                          Live, laugh, love, forgive, and never ever give up!

                          Mary

                          Comment


                          • #14
                            Re: sick of watching people die

                            Margi,

                            I am very sorry for your loss. You are right, it is not fair.

                            Emily's mom said it very well.

                            It is very tough being forever tied to the medical world. Whether it is dealing with debilitating HCM, chronic a-fib, the coumadin clinic, or post transplant, it is difficult to live with.

                            Esther made an excellent point, there are many people who need you and love you.

                            Margi, you are so young, you really do have a wonderful life ahead of you. Granted, it's not perfect, and you definitately had your share of trials; but you can enjoy the rest of your life. You are a sweet, caring and thoughtful young lady.


                            Many hugs,
                            Eve
                            49 yrs. old
                            Diagnosed at 31.
                            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                            My brother passed away suddenly at 34 yrs old from HCM.
                            2 teenage children, ages 17 and 15.

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