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  • Good Bye to friend

    [Good Bye to friend]

    Author: lisa (208.47.172.---)

    Date: 05-23-02 12:49

    It is with sincere sadness we announce the passing of Carolyn Biro, board member of the HCMA and founder of the Cardiomyopathy Association in the United Kingdom.

    Carolyn recieved a heart transplant last June and had been battleing with rejection and various side effects from drug therapy. She passed away Tuesday, May 21, 2002 from a brain tumor.

    Carolyn was the most amazing woman I have ever met. She was strong in spirit, focused to her cause and committed to raise awareness about HCM. In 1995 after my sisters passing I reached out the her for help. After 2 phone calls she said 'I have been waiting for someone from the states to call me and your the one, You are going to start a group for americans', She is one of the biggest reasons why the HCMA and this message board is here.

    I will miss her dearly, but I know that because of Carolyn we all have better lives.

    I can smile now knowing that Lori and Carolyn have now met and will forever watch over us all.

    So rest in peace dear friend and please know you will forever be with me.

    Respectfully,

    Lisa Salberg

    President

    HCMA

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to friend]

    Author: Chuck Morrell (---.proxy.aol.com)

    Date: 05-23-02 13:52

    SORRY

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to friend]

    Author: CONNIE (---.direcpc.com)

    Date: 05-23-02 17:21

    HI LISA...........IM SO SORRY TO HERE OF YOUR FRIENDS PASSING. I HAVE A QUESTION FOR ANY AND ALL..........HOW DO YOU COPE WITH THE CLOUD THAT HANGS OVER YOUR HEAD WITH H.C.M. I HAVE NEVER BEEN A DEPRESSED, DWELLING, SAD PERSON. I HAVE ALWAYS BEEN ABLE TO THROW MY SHOULDERS BACK AND PULL MY BOOT STRAPS TIGHT AND GET ON WITH THE BUSINESS OF LIVING, IN ANY SITUATION. UNTIL NOW....I CANT SEEM TO SHAKE THE FEAR OF DYING AT ANY MOMENT.....IM AFRAID OF DYING ANY WAY.................I HATE WHAT THIS IS DOING TO ME......I CRY AT THE DROP OF A HAT............I STAY ANGRY WITH OTHERS...I WAS UP LAST NIGHT AT 1:00 AM SITTING IN THE DARK CRYING AND FEELING SORRY FOR MY SELF. I HATE THAT THE MOST..........FEELING SORRY FOR MY SELF. I DONT TELL ANY ONE HOW I REALLY FEEL..........MOST PEOPLE DONT KNOW OR UNDERSTAND H.C.M ANY WAY....SO WHY BOTHER. I NEED MY LIFE BACK...........IM NOT THE SAME ANY MORE............IF ANY ONE HAS ANY ADVISE IM OPEN TO IT..............CONNIE

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Lisa (---.dyn.optonline.net)

    Date: 05-23-02 18:21

    Frankly Connie, today is not the best day for me to answer your concerns, but I will do my best and try to pepper it with what I think Carolyn would say.

    Rule 1 the fear of death is worse then death...

    Honestly the chances dieing from HCM or related complications are about the same as getting into a car accident and dieing.

    So we are left with the fact that we are mortal...and that is that. There is nothing we can do about that. We can do our best to take care of ourselves, eat right, excercise, take medications, use implantable devices (ICD's) and educate ourselves.

    I have been surrounded by death, HCM related and others all my life...this is what happens in a large family with a great deal of older aunts and uncles. If I said I was never afraid of death it would be a lie... HOWEVER, I choice to LIVE while I am alive rather then worry about death that will come someday (many many many years from now I hope!)

    In closing please understand that Carolyn fought for life harder then anyone I have ever seen. She used all available tools to help her...however she had many medical problems, not just HCM and the body can only take so much, spirit only carrys one so far.

    Connie, please do not stop living for the fear of death, it is not worth it...Live, Love and laugh, thats what IT is all about.

    Love,

    lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: sarah beckley -moderator (---.dsl.mindspring.com)

    Date: 05-23-02 18:41

    Dear Lisa,

    I'm very sorry that Carolyn is gone. I know that she has left a big hole in a lot of hearts, but her legacy is great and big hearted. Sorry for all the heart puns, but I expect she would be ok with that.

    Dear Connie

    We all feel like that sometimes. Lisa is right, the stats on dying from HCM are very low. In fact, those sudden death statistics have been found to be very skewed from over-reporting of very ill people and the rest of us just-kinda-sick people are under-reported.

    No, most of the people around you will not understand your fear or your disease. However, that is what we are here for. It is very, very difficult to face your fears, but do not be afraid to share your feelings with your family. You need to reach out and let them help you. You will live a long, full life if you want to, truly. One day at a time.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Sherry (---.ras11.floca.tii-dial.net)

    Date: 05-23-02 19:33

    Lisa,

    I'm truly sorry for your loss. Your friend sounds like an amazing person!! Thanks to her and her determination, we have a wonderful association to inform people of this disease. This site has helped my family tremendously. We have been able to educate ourselves, vent, and develope relationships with people facing the same type of things we are. She has earned her wings many times over and will always be with you.

    As for Connie,

    You have been given a life to live! There are many obstacles we all come across in life. That is what gives us strength. No one has been promised tomorrow. We must live today for today. We all have our down times, but we have to look at our blessings. It also helps to remember that no matter how bad we seem to have it, there are many others who have it a lot worse than we do. I have had a lot of loss in my life, it is hard to deal with. But, everyday that I awake to a new day, I thank God for my family and the blessing he has given me, and I'm determined to make it the best day ever! The people around you have to be educate on this disease. Many people think that my hubby is fixed now that he's had surgery. We all know this isn't true. He is still here with the children and I. It doesn't matter what others think. We adjust to what life gives us and move on. I truly hope you can find the strength to get past this and continue to enjoy your life. It truly is meant to be lived!

    Sherry

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Chuck Morrell (---.proxy.aol.com)

    Date: 05-23-02 19:37

    Connie,

    Do you have an ICD??? If you have HCM and don't have one you will be suprised at how much safer you feel with one. Please explain why you are so scared. Have you been near death?? Please explain the reason for your fears....Chuck

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Connie (---.proxy.aol.com)

    Date: 05-23-02 20:26

    Hi Chuck...and everyone one else with such up lifting advise and concern: No I dont have an ICD......I just became aware of the fact I have HCM, and i guess I just havent had time to adjust to the Idea. I am waiting for the results to see if my youngest(15) daughter has it.....she has all the signs. Since my diognosis I have read so much about HCM and its just so depressing. Hardly no positive info for the future. Any and all doctors that specialize in HCM are all in the north...hundreds of miles from where I live. If I had an appointment I couldent afford to travel that far. So I see a local Heart doctor and hope for the best. He seems to be informed about HCM.

    I have never been near death before, I have just always dreaded the thought of dying. All of my family above my generation are all dead, everyone....no mom, dad, aunts , uncles, grand parents ect......and its been this way for years. Its me , 2 sisters and a brother. I guess the bottom line is, I dont want it to end...i want to live forever and thats just not realistic..........I will get it together sooner or later..I have always been able to adapt...its just too fresh right now. These are feelings that are completely alien to me... but this is just a little stumble. Thanks for all the concern and advise................connie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 05-23-02 21:41

    Hello again Connie this is for you...

    I am sitting here in the HCMA office (long after I should be home!) working on the golf outing booklet and listening to one of Carolyns favorite songs... "The Rose" by Bette Midler.

    If you know the song then you may recall the line....

    Its the heart afraid of breaking that never learns to dance... its the the dream afraid of waking that never takes the chance, its one who wont be taken who can not seem to give and the sole afraid of dieing that never learns to live.

    So I say this to you Connie (and to all the Connies living with HCM)

    Learn to dance, take a chance, give of yourself and then you will live. If you sit around worring about death, well then are you living????

    Carolyn LIVED and because of her many others did too.

    Peace to you all and please so not focus on Carolyns death she would want you to focus on her life, and a wonderful life it was.

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 05-23-02 23:23

    ps please disregard my typos... I am a little tired here!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Chuck Morrell (---.proxy.aol.com)

    Date: 05-23-02 23:54

    Connie,

    My entire family has been effected by HCM, However a person only has one time to live, so please don't waste it being scared. Ask Lisa, there are thousands of people living near normal lives with HCM.

    I was a little nervous before my HEART TRANSPLANT.

    It is just like when a loved one dies. A person can be sad, it is the correct way to feel, or end it all. THERE IS NO SENSE TO THAT...Chuck

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)

    Date: 05-24-02 17:09

    Lisa,

    I'm very sorry to hear of your loss. My thoughts are with you.

    Connie,

    I understand how your feeling. The idea of living with HCM is still very fresh for me too. Alot of times I can't sleep at night either, but than I realize life is too short to be wasted. So while we are here, we need to live life to the fullest. I just hope with time that I will feel less worried. Best of luck to you.

    Take care,

    Brie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Laura (---.proxy.aol.com)

    Date: 05-25-02 08:57

    Connie,

    You just need to give yourself time to adjust. When I was diagnosed, I thought I was going to need a heart transplant. My symptoms inhibited me from teaching and my life seemed over. Well, I went to therapy because I really needed to talk to someone because I was so depressed. I went on prozac for 8 months. It really helped me. I haven't taken it in almost two years. I never was on it before. It just got me through the life adjustment I needed. I was VERY DEPRESSED.

    That seems so long ago. Now I love life and realize I am on a different path. Your feelings are very real. Once you get so depressed, sometimes you need outside help. Feel free to e-mail me anytime.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Connie (---.proxy.aol.com)

    Date: 05-25-02 09:31

    Thank you all so very much................everything everybody said is so true. I am feeling much better about the whole thing. I talked to my husband and we both agree we are not going to dwell on our Illnesses, we are take care of our selves as best we can and live for today. We have already planned a trip to the mountains in june...this to me, is a wonderful place to reflect and meditate.

    Connie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Good Bye to a friend]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 05-25-02 09:44

    I spoke to Carolyn's husband yesterday, Andrew is holding up as well as can be expected.

    He said something that is so true...'for the mountian was too high' Carolyn climbed many mountians in her life, but this one was too high.

    I told Andrew what Carolyn ment to me and how she changed my life and the lives of countless others. I told him that marriages took place, careers were pursued, babies were born and people LIVED their lives because of Carolyn.

    Carolyns funeral will be on May 31, 2002. I will be unable to attend as that is the day of the HCMA meeting in New Jersey. I ask you to take a minute on May 31 and think of Carolyn her life, her accomplishments and smile because the world is a better place because of her.

    After the funeral has passed I will post the tribute the HCMA has given to Carolyn. As final arrangements are not complete I do not want to say anything until it has been done.

    Also Andrew has told me he has looked at the postings on this message board, so please feel free to send messages to Carolyns family via this board.

    God bless Carolyn...

    Lisa
    NOTE: This is a post from the previous forum message board.

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