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.

June 16 - a day with great meaning

Collapse

About the Author

Collapse

HCMA FORUM ARCHIVE Find out more about HCMA FORUM ARCHIVE
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • June 16 - a day with great meaning

    [June 16 - a day with great meaning]

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

    Date: 06-16-02 19:58

    It is my most dreaded day of the year, June 16, the day my life changed, not once but twice.

    On June 16, 1990 – Fathers Day – I awoke with a headache that was blinding, the best way I can describe it sis to say it felt as though someone was repeatedly stabbing me with an ice pick in my right temple. After a trip to the ER I was sent home and told to sleep it off, I most likely had an inner ear infection, or maybe MS (yeh and they sent me home). They did draw blood and give me some pain killers but home I went. 8:00am Monday June 17, 1990 my Dr. calls and tells me to take any antibiotics I had in the house and to go for an MRI RIGHT away! I said well I guess I can drive, he said DO NOT DRIVE get your husband home and have him take you ( I had been married 3 weeks). Well the MRI showed what he had suspected, I was having a stroke, secondary to sub acute bacterial endocarditis (had an emergency root canal 2 days before my wedding and my FORMER dentist said genetic conditions do not require premeditation – WRONG). I spend 12 days inpatient then 6 weeks with an IV at home. Since then I have developed a seizure problem due to the damage caused by the stroke (nothing a little dilantin cant control).

    Well, life went on and I recovered …. Then June 16th hit again.

    5:50am June 12, 1995 the phone rang, it was Mom, Lori is not breathing, Dad is there doing CPR, Larry (my brother) is getting the ambulance (dad and Larry are on the 1st aid team for our town). I was 8 months pregnant and living 45 minutes away. I was in the car with my husband and on the way to the hospital not having any idea what we would find when we got there. The ride is a blur – and for some reason we got there much faster then we should have. The CPR worked, she was alive, but barely. She was transported to a larger hospital right away, Morristown Memorial, this is where we lived for a week.

    Monday – let her rest, she should wake up tomorrow and then we will know what we are dealing with, expect brain damage. That’s what we were told. We were all happy and ready to take on what ever needed to be done.

    Tuesday – She did not wake up – more damage than we though, lets see how she looks tomorrow.

    Wednesday – Lets do an EEG – check for brain activity. We see some activity, but it could be artifact, let try again in 24 hours.

    Thursday – She is running a high fever, systems appear to be shutting down. Lets do the EEG Friday morning and see how it looks.

    Friday - EEG was flat, your sister is brain-dead. Has Lori ever told you her feelings regarding organ donation, my family was asked, we did not take much time to tell them, Lori would want to help others, use what you can. At 4:36pm her doctor, cardiologist, came by, he said he was there to say good bye. He checked her vital signs, kissed her forehead and walked out and said you can see her if you want. Funny thing was I did not know at that time that his saying good bye meant he had signed her death certificate and she was really gone.

    June 16, 4:36pm 1995, my sister died from complications of Hypertrophic Cardiomyopathy. Funny, caring, giving, determined, and lover of life…age 36 mother of 2 and dear friend to so many gone.

    Within 3 months of her death I learned that not only were treatment options available, but that she should be alive. I also became a mother myself and wondered, will my child have HCM? Will I be here to raise her? Will I be able to care for Lori’s child who also has HCM? Are there other people lost like me?

    This is why the HCMA exists.

    God Bless Lori and all those lost to HCM.

    Rest in peace Lori, you will forever remain in my heart

    Your loving sister,

    Lisa

    6/16/02

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

    [Re: June 16 - a day with great meaning]

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

    Date: 06-17-02 08:01

    Dear Lisa,

    ... I know your sister is looking down at you with love; proud of the work you are doing - taking up the cause to educate and support others who were also lost.

    God bless you for all that you do!

    Karla

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

    [Re: June 16 - a day with great meaning]

    Author: Patricia Grall (---.dwave.org)

    Date: 06-17-02 09:17

    As a hospice nurse, I also believe Lori is with you whenever you need her spirit. I spent many an hour with patients leaving this life as we know it and felt their loving family/friends spirit in the room. I believe this more now than ever before. So... please know that your sister is always with you, by your side, and extremely very proud of what you have done. Not to mention your loving concerns for her children.

    This site is a beautiful honor to her and her family. As I go back to work, I may not be apart of it for long, but it is here for me now when I really needed it. And for the many others that are first learning of their HMC. Thank you again for that.

    Most important thank you for sharing the story of your sister.

    Patricia Grall

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

    [Re: June 16 - a day with great meaning]

    Author: Linda (---.wmnsmd.adelphia.net)

    Date: 06-17-02 10:14

    Dear Lisa, As we were talking on the phone last nite, I knew I wouldn't be able to read your posting then. I had to wait till this am. As I sit here in tears, I think it's time the rest of the HCMA membership know just how close you and I have become and that I can truly say I love you as one of my sisters. I have shared with many that you and I only met when you called to tell me of Lori's death. She was such a special person and we had known each other for several years. Of course, I knew all about the little sister who was about to have her first baby, and you had become a frequent topic of our conversations. So I guess I did already know you, or at least a lot about you. Big sister would be so proud of how you have to risen to the occaision and gone so far beyond. She knew John and Stacey would be loved and cared for, just as you and the rest of your family have done. She knew she had "good kids" who would do just fine. I think she has "great kids" who have done better than wonderful. Yesterday, June 16th was Father's Day, my Dad's Birthday, and the Birthday of a very special neighbor who lost his life in an auto accident, so June 16th stands out in so many ways. My Dad died suddenly of a "cardiac arrythmia" in 1987, just 2 wks after he was given a clean bill of health, EKG and all. Only complaints were shortness of breath, tiredness, and high BP. I am the mother of a son with HCM. For those who don't know, I am a Board Member of the HCMA. Thank you, Lisa, for all you do, please know how much you mean to so many. From the BOTTOM OF MY HEART, Linda Price

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

    [Re: June 16 - a day with great meaning]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-17-02 11:26

    Thank you all for your kind words, it is very important to me that Lori not be lost in this world, her memory must live on so that others can LIVE with HCM.

    Linda - you are such a special person to me, and you know that - for the rest of you who are reading this - Linda was one of my first "contacts" to someone else (non family) living with HCM, it was over many conversations with Linda that helped me see what was needed for support to the whole family, not just the person with HCM. Linda and I are very different in our communication style and frankly we compliment each other rather well, this is one of the keys to the HCMA's success.

    While Linda lives in Maryland and I in NJ it proves that sometimes there are people in the world who are meant to meet and work together for a greater cause. I had also heard of Linda via Lori, "the woman in MD with a young son with HCM". After Lori died I found a letter on her makeup mirror, it was a sweet note of support from "Linda" the return address was Maryland, so this is the friend from Maryland I thought, I guess I better call her and tell her Lori is gone, it was a very difficult call. I believe Lori left me many things; one of them was a wonderful new friend, who I have grown to love like a new sister. Linda, I am happy Lori left me you.

    Funny thing when I lost Lori, I was left with one sister, Lynn, in the years after Loris death I gained 2 new sisters of sorts, Carolyn Biro and Linda Price.

    Maybe this year’s anniversary of Loris death is a little harder on me due to the recent death of Carolyn. Those women with sisters understand the connection between sisters and I know many of you have lost sisters; it is its own type of loss.

    In all things I try to "focus on the Future" (a sign that hangs in my office). I hope each of you reading this knows that because of Lori, we all have a brighter future.

    Best Wishes,

    Lisa Salberg

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

    [Re: June 16 - a day with great meaning]

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

    Date: 06-18-02 22:36

    Hi Lisa...I just got back in town and read your post about the aniversary of your sister's death...I am so sorry for your loss.yes sisters are special....some times we drift apart and it takes somthing like HCM to bring us back together...as in my case.

    I am sure HCM took my mother at the age of 59 and her father at the same age...but i know she is near me...as I believe in spirits that comfort us. My mama has looked out for me for 19 years.and so has your sister. Like so many others said......she would be extremely proud of you,.....as I know I am for providing HMCA for all of us to come together and share...that is a great comfort!!!

    connie

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

    [Re: June 16 - a day with great meaning]

    Author: Mary Catania (---.proxy.aol.com)

    Date: 06-20-02 11:22

    Dear Lisa,

    I just read your message about June 16. That day will be in your heart forever, but it will also be a day for you to spend in special remembrance of Lori, feeling her closeness to your heart and mind and body. She has never really left you, after all. She is with you every day of your life, communicating with you through the wonderful people and things that touch your life and make it a joy to live. Having had her in your life has enriched your life, and will continue to do so. There are so many "could have beens" in our lives that might have changed things, but if we dwell on those things negatively, we cannot grow. You have used those "could have beens" in your life, and have transformed them into positives for so many people, including me, who are thankful for your caring work.

    You are in my prayers,

    Love,

    Mary

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

    [Re: June 16 - a day with great meaning]

    Author: Jennifer (---.ne.client2.attbi.com)

    Date: 06-24-02 18:11

    I came to this site in search of information, an explanation...something to help

    me gain understanding about the word 'cardiomyopathy' which, until a week ago meant nothing to me. Now it is the word that comes from the autopsy report

    of my sweet cousin Sarah who died suddenly and without ANY warning on

    June 15th. What a strange and sad coincidence that the date is within a day of your loss. She was a seemingly healthy 37 year old mother of three little boys ages 6, 3, and ten months. The pain and sadness of this tragedy are overwhelming for me, and must be unfathomable to her husband, children, parents and siblings. Apparantly the autopsy report won't be complete for months, and in the mean time I will try to learn whatever I can about cardiomyopathy and how it could take a young life so swiftly from loved ones and friends.

    Sincerely,

    Jennifer

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

    [Re: June 16 - a day with great meaning]

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

    Date: 06-24-02 21:30

    Jennifer, We need to know what kind of cardiomyopathy she had there are several types. My heart goes out to you entire family, I know too weel the feelings many of you are going through. Feel free to call the HCMA office to discuss the autopsy results, I can try to help you put it into english - rather than Dr talk.

    Best wishes,

    Lisa

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

    [Re: June 16 - a day with great meaning]

    Author: Shannon Santagate (---.galileo.com)

    Date: 06-25-02 14:30

    Lisa -- I just want you to know how much this site and your story mean to me. My sister died of complications from HCM in 1998. I was 7 months pregnant and advised by my doctor not to travel as I was catagorized as a "high-risk pregnancy" due also to HCM. She live in Arkansas, and I live in Colorado. It has taken a long time for me to come to terms with not being there and not being able to say goodbye. I know for you it must be even worse because you had warning. My sister had been going "downhill" for a long time. I know that your sister would be so proud of you now. You are doing such a great service for all of us. Hopefully someday noone will have to lose a sister this way.

    Thank you so much for the help and support you give.

    Shannon

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

    [Re: June 16 - a day with great meaning]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-25-02 17:11

    Shannon,

    Thanks your sweet, I am sorry you did not get to say goodbye the way you wanted to, but I am sure you know your sister knew you were thinking of her.

    How is your baby (who is not a baby any more), I was 8 months preg. when Lori died, I do not know what I would have done without my Becca to show me life goes on. I also, at the last minute changed my daughters name to Rebecca Lori-Anne as a tribute to my sister.

    Thank you Shannon for sharing your experience, it is good for people to know that I am not the only one that suffered this type of a loss... and your posting will help others, thanks for sharing.

    best wishes,

    Lisa Salberg

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

    [Re: June 16 - a day with great meaning]

    Author: Shannon Santagate (---.galileo.com)

    Date: 06-25-02 18:24

    Hi Lisa.

    My son Drew will be 4 in September and I just can't imagine my life without him!

    Just FYI: We had him tested by the Peds. Cardiologist at about 2 years. No HCM detected yet but we know it usually doesn't show up till much later. We will keep our fingers crossed! We are hoping he got my husband's heart and my hairline!!

    Shannon

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

    [Re: June 16 - a day with great meaning]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-25-02 18:27

    Shannon -

    I will keep my fingers crossed for your little one... Funny if Becca was a boy her name would have been Drew!

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

Today's Birthdays

Collapse

Working...
X