Category: organ donor

Strength in a Heartbeat, Diary of a Heart Transplant, why I created my book

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      My book Strength in a Heartbeat, Diary of a Heart Transplant was created from a
journal I would write in when Lauren and I were living in Brigham and Women’s Hospital in Boston Ma. waiting for her gift of life, a heart.
So many people encouraged me to turn my journal into a book.  After a long thought process, I decided to do it.  My goal for publishing our story is to help other’s that are living in the same situation we were in.  To help them feel they are not alone.  When we were living in the hospital, many miles away from family and friends, I felt very alone, scared and always wondering what the day would hold for us.  Is it going to be a good day or bad day?  Sitting there watching my daughter connected to so many machines, always feeling like I just want to take her and go home back to our life before this all happened. Asking God, “why” and to please help her, give her the strength to get through another day.  A mother should never have to watch her daughter live this type of life.
When I finally decided to write my book, it was very hard.  I was reliving every day over and over again.  It took me two years to complete the process.  I found a great editor to work with to help perfect the final product.
So now the manuscript is now in book form, time to find a publisher.  I self published from the company Createspace.  This company took me through the process of creating my book cover and formatting my book the way I envisioned it.
I highly recommend this company if someone wants to self publish a book.
I released my book for sale in August 2017, since then it is now selling on Amazon, (paperback and kindle versions), Shop on the Pike Gift Shop in Brigham and Women’s Hospital gift shop and also Odyssey Bookshop.
I am hoping this book will help people understand the organ transplant process and the importance of becoming an organ donor.
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TO SUM IT UP:
I have slept in a hospital chair, window sills and couches.  Skipped meals and cried from fear.  I have become an expert on Lauren’s condition.  I am a strong advocate that had to make life changing decisions.
​    I am a parent of a medically complex Warrior !!!​Lynne Robitaille

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Finished Writing My Book

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Yes, I finally finished writing my book.  Now to start a new venture…..

GET PUBLISHED

          It’s our story about Lauren’s heart transplant.  Finding out my daughter was very sick, to being listed on the transplant list and living in the hospital for almost one and a half years.  The highs and the lows we endured during that time.  It’s my  journal I kept.  Now I am ready to share with everyone.  So many people are living that life now, I hope my book will help them know they are not alone.

 This is the perfect month for me to get the publishing started.

April is National Donate Life Month

 

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  We have our flag proudly flying in the front of our house to help bring Organ Donation Awareness.

 

To become an organ donor, click on the link below, or to learn more on this subject.

                         donatelife.net

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Pass this on, let’s try to inform everyone

the importance of organ donation.

                                                       Love Lynne

Fears About Organ Donation

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Survey Reveals Unfounded Fears About Organ Donation, US

Transplants / Organ Donations

Surgeon with human organ for transplant
Surgeon with human organ for transplant

A recent online survey of over 5,000 America adults found that misconceptions about the organ donation process are the most likely reasons for the gap between the number of people who would like to be donors and the number who actually register.

The main survey results are revealed in the annual report of the advocacy group Donate Life America. The report is titled “National Donor Designation Report Card, April 2009” and is the second annual report to detail the continued efforts to increase donor designations across America. The survey was conducted by Survey Sampling International for Donate Life America in partnership with Astellas Pharma US, Inc.

Most states in the US now have a straightforward scheme for licensed vehicle drivers to sign up to be organ donors: it only requires a signature and can be done when you apply for or renew your licence.

However, so far only 38 per cent of licensed drivers have signed up, and the survey suggests the reason could be fears and misconceptions about the organ donation process.

The survey showed that:
51 per cent of Americans wish to donate some or all of their organs and tissue.

Another 26 per cent are not sure.

58 per cent mistakenly believe that it is possible for a person to recover from brain death.

51 per cent incorrectly believe doctors may not try as hard to save a life, or aren’t convinced they will, when they know the patient is an organ donor.

44 per cent wrongly think that in the US there is a black market where people can buy and sell transplant organs and tissue.

23 per cent of people who reported being undecided, reluctant, or unwilling to donate their organs and tissue are not sure they would be accepted as donors. (The report said here that in reality, age and health status do not stop people from being potential donors because screening occurs before the organs are recovered for transplant).
The report says there are more than 100,000 Americans waiting for donor organs and tissue, and 18 die every day for lack of available organs.

There are also faces behind the numbers, and the report describes inspiring stories of donors and recipients, and the not so fortunate patient who died while waiting for an organ to be available.

Lorri was a 35-year-old mother who suffered a brain aneurism and was declared brain-dead but she had registered as a donor and “thanks to her compassionate gift seven people received lifesaving organ transplants, and countless more received the gifts of healing and renewal through tissue transplants”. The report describes her decision as giving peace to her family.

Seven year old Mikey can now do almost anything other boys his age can do, like ride his bike, roller skate and swim, thanks to a life saving liver transplant. But sadly baby Ryan, who was born with a dangerously enlarged heart, died at seven months while waiting for a new heart to become available.

Sara Pace Jones, who is chairwoman of Donate Life, told the New York Times that erroneous beliefs about organ donation could be a result of how it is shown on television dramas. She said some TV shows don’t have time in an hour to tell the whole story, and this can lead to inaccurate portrayals of how donation works.

“Many times I have seen a story unfold where the same physician treats the patient when admitted to the hospital, takes them to surgery, pronounces the patient dead, accesses the transplant list and does the organ recovery and transplant. But this is not how the donation process happens,” said Pace Jones.

But she stressed that the “doctor who is trying to save the life of the injured patient is not the same doctor who recovers organs for transplantation”.

Many people also don’t realize that the organizations that check the donor and patient registeries and co-ordinate the donations are separate from the hospitals that treat the recipients, she added.

Pace Jones said that people are reassured when they realize that “everything will be done to save their lives after an accident”, and when they understand that “the doctors who treat them have nothing to do with the transplantation process”.

Please take a moment and consider becoming an organ donor.

Lynne  1437940979_love_valentines_day_11

2015 Westfield Downtown Cultural Series, great day

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On Saturday October 17th, Lauren was invited to represent Donate Life at this great Event.  It was a very windy day, overtime we set her table up the wind would come by and blow everything off.  But that is the price we pay, to promote donor organ awareness.  This was a two-hour event and Lauren was able to sign up three new donor’s.  Great successes.

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Joe Whalen and his band played.  Joe is also a heart transplant receipt.  It was so cold that day, but a very nice event to enjoy.

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Joe and Lauren with one of their nurses from Brigham and Women’s Hospital in Boston Ma  They are survivors, ready to take on the world today.

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Lynne  1437940979_love_valentines_day_11

Pope Francis speaks about Organ Donation

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Organ Donation Called Ultimate Gift of Compassion

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TUESDAY, 29 SEPTEMBER 2015

To mark the visit of Pope Francis to the United States, NJ Sharing Network is reminding the public that most religions, including Catholicism, support organ and tissue donation. Pope Francis described the act of organ donation as “a testimony of love for our neighbor” when he met with the Transplant Committee for the Council of Europe, which gathered in Rome last year.
“As Pope Francis travels in the United States, we want to spread his poignant words about organ donation. At NJ Sharing Network, we know that donation is a generous, life-saving gift. We are grateful that Pope Francis has spoken so positively about the gift of life,” said Joe Roth, President and Chief Executive Officer of NJ Sharing Network.
Pope Francis is not the first pope to speak in favor of donation. Pope John Paul II said, “The Catholic Church is clear that, in itself organ donation is a good and meritorious thing. It’s a powerful expression of human solidarity. Such actions can help build a culture of life, a culture in which life is cherished.”
Not only does the Church accept organ, eye and tissue donation, it also recognizes donation as a great act of charity and love. Pope John Paul II also said, “The Catholic Church promotes the fact that there is a need for organ donors and that Christians should accept this as a challenge to their generosity and fraternal love. One of the most powerful ways for individuals to demonstrate love for their neighbor is by making the informed decision to be an organ donor.”
Nearly 5,000 people in New Jersey are waiting for a life-saving organ transplant. This miraculous task of providing life-saving organ transplants to the men, women and children on the transplant waiting list would not be possible without the selfless decision of those who register as organ and tissue donors. Registering as a donor makes a strong statement about the kind of person you are and want to be and relieves your family from the burden of having to make the decision for you during a time of trauma and loss. One organ and tissue donor can save and heal the lives of more than 50 people – a life-changing gift to the recipients, their family members and the community on a whole.
Registering as an organ and tissue donor shows an individual’s compassion for others, and can change lives forever.
You too can save lives. In honor of Pope Francis’s visit to the United States this September, register as an organ and tissue donor today

Strong words, from our Pope.

Lynne 1437940979_love_valentines_day_11

Hope for Cian, please take a moment to read

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Awhile back I posted the story about Cian McDonnell-Lynch.  He is now in Boston.  Please view the news video.   My heart breaks for him and his family.  Like his mother said “where there’s life, there is hope”.

With everything that is going on in the world, let’s not forget to help people who truly need our support.  Please pass this on, every little donation or prayer will help.

Cian is just four years old.
He’s been given until Christmas to live.
His family, saying they refuse to give up, has traveled to Boston Children’s Hospital in the hopes that one of the world’s premiere hospitals can help keep him alive.
Cian has been fighting an often deadly bone marrow disorder called Dyskeratosis Congenita since birth.
“It’s a very rare disease,” his mother, Lisa McDonnell, told WBZ-TV Tuesday.
“It affects one in a million. And Cian is actually at the more severe end of the syndrome.”
Cian McDonnell-Lynch and his family in Boston (WBZ-TV)
The disease left Cian permanently blind at the age of one. He did get a successful bone marrow transplant two years ago, but the disease is now affecting his lungs with another rare and deadly disorder, microscopic pulmonary AVMS.
“They’re actually microscopic blood vessels; they’re malformations,” his mother explained. “And the oxygenated blood is not getting around to his whole body.”
“We were told today that it’s actually progressing very quick, so we’re just really really hoping that he’ll be accepted onto the transplant list here in Boston.”
Cian has been given only a few months to live.
A double-lung transplant would likely save his life, but he was rejected for one at a hospital in London.
“He was the first child that they’ve seen with this condition,” Lisa said. “It’s just so rare. I think they’re just afraid of what the outcome is going to be. His quality of life afterwards. But we just can’t give up on him.”

So Lisa and Cian’s father and big sister have come to Boston Children’s Hospital as their last hope. The hospital has begun running tests on Cian to determine if his body can handle the transplant.
But if it can, the family’s Irish insurance policy will not pay for the surgery here in the sates.
Between the procedure and recovery time, the family will need more than $1 million out-of-pocket to keep their son alive.
That heart-wrenching story has touched off a massive fundraising effort in Ireland that has spread here to the U.S. and as far west as Australia. Well more than 5,000 people around the world have donated close to $200,000 already.
But there’s a long way to go.
“It’s just so heartwarming to think that everybody cares so much about him,” Lisa said. “Everybody is really fighting in our corner, in his corner, and he’s going to get the best possible chance.”
“Where there’s life, there’s hope.”
If you want to donate, please click here: http://www.gofundme.com/hopeforcian.
You can also learn more about Cian’s story at http://www.hopeforcian.com, and on his Facebook page, “Hope for Cian.”

Lynne    1437940979_love_valentines_day_11

Lauren was named Chicopee’s Ambassador for Donate Life New England

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Today was a special day…Chicopee has a new Ambassador.

Lauren Meizo, was given the official title of

Chicopee’s Ambassador for Donate Life New England

Pictured with Lauren is Matthew Boger, State Relations for Donate Life.  They were at the Chicopee Registry this morning, spreading the word.

Lauren’s duties will be to educate, inform and tell her story about organ donation.

If you have an organization, or event that you feel Lauren would be an asset, to the event to speak on this topic, please feel free to contact us.

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My daughter, amazing, strong, beautiful, with a strong willingness to help others.

A very proud mother

Lynne

A note from Lauren ***

I am honored to be thee Ambassador of Donate Life for my community. Spreading the importance of organ donation has become my new passion. I am one of the lucky ones who actually was able to receive an organ, my heart in time. This is not true for all. Currently, over 123,000 people are waiting, many with their lives on hold to hear those five life changing words, “we have found a match!” while others may never get that second chance, all due to a shortage of organs. Before I went through all I did, I never put any thought into organ donation. So now that’s why I am here to encourage others in becoming Organ Donors!

With sincere love & all my heart,

Lauren

Ambassador for Donate Life, NE

Living life again

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This is my daughter Lauren.  A little under 2 years ago she had a heart transplant.

Look at her now.

She absolutely loves taking motorcycle rides.  Being confined in a hospital bed for a little over a year and a half, she loves the freedom she get when she takes a ride.  I was nervous about her getting on a motorcycle, but she is 25 and wants to experience all that life has to offer her now.  Plus we are very picky on whose bike she gets on.

Came across this picture and wanted to share.  Because someone was an organ donor, this picture was made possible.

Lynne