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


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

Lauren, one of the Leading Ladies for the Go Red For Women


Lauren was selected to become one of the 2016 Go Red Leading Ladies of Western Ma.  Lauren is seated in the front row center.  When Lauren was asked she said “It is an honor to be asked and help the American Heart Association in the Go Red campaign to help bring awareness of heart disease in women”.

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Yes I can say, I am a very proud mother.

Also, not only being in the campaign poster, Lauren has been asked to be the guest speaker at the Go Red For Women Luncheon.  At the luncheon, before Lauren speaks, there is going to be a video shown of Lauren speaking about what has brought her to be part of this organization.  The film crew came here to our home.

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Lauren was very nervous, but did an outstanding job.  She actually had the director and the film crew in tears talking about her story, her life experiences.  Oh hell, she had me in tears also.  I cannot what to see the finished video.

I am so proud of the women Lauren has become, and is using her life experiences to help others.

Below is information about the Go Red For Women Luncheon, please show your support for this wonderful organization.

Where:
Log Cabin
500 East Hampton Road
Holyoke, Massachusetts, 01040     
Link to Map
When:
Starts:Fri, 26 Feb 2016 11:00:00 AM
Ends:Fri, 26 Feb 2016 2:00:00 PM

The western Massachusetts Go Red For Women Luncheon is the American Heart Association’s signature event! Join us for a delicious heart healthy lunch while learning about women’s heart health. The day will include survivor speakers, health screenings, and a keynote speaker. The Go Red For Women movement is dedicated to making an impact in the community through education and fund raising to fight the number one killer of women, heart disease.

To register visit http://www.wmassgored.ahaevents.org

Lynne1437940979_love_valentines_day_11

Fears About Organ Donation


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


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

2015 Westfield Ma. Downtown Cultural Series


2015 Westfield Downtown Cultural Series

Saturday, October 17, 2015     2-4 p.m.

Lauren and I had the pleasure of meeting Joe, when we were in the hospital in Boston Ma.  Lauren was recovering from her heart transplant and Joe was waiting for his new heart to arrive.  A beautiful freindship began and continues……..

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The trio will be performing as part of the downtown cultural series developed from a grant provided by MassDevelopment to bring attention to underutilized spaces in the downtown core area.

The show will take place at 55 ELM STREET from 2-4 pm. on Saturday, October 17th

The music we showcase is a collection of Latin Jazz, Modern jazz, traditional blues in the styles of BB King and Elmore James, as well as bringing a jazz twist on such artists as the Rolling Stones and Jimi Hendrix.

Join us for a great fall afternoon concert. Bring a chair, visit one of the local shops, grab some food and drink, and just have a good time with us

We will also be raising awareness for the group DONATE LIFE. Donate Life America is an organization that helps raise awareness and educate about the need for people to become organ and tissue donors. Without my heart transplant 18 months ago, this concert would not be possible. Please come down and talk to either Joe Whalen or fellow heart recipient Lauren Meizo of Chicopee to get information about how you can help.

http://www.donatelife.net

Lynne  1437940979_love_valentines_day_11

 

A mother’s message, Lisa Cian’s Mammy


This morning, Cian’s mother Lisa wrote a message of thanks and love

“I want to thank everyone for the messages of support during this difficult time. I haven’t read most of them yet or answered you all but thank you. Donal, Chloe and I are completely devastated by the loss of our beautiful little Cian. I am just so honoured to be called Cians Mammy. He thought me so much and definitely made me a stronger and better person. He made alot of people better people. In a lifetime no one would endure what he did in four short years yet he always had a beautiful smile on his face. I love my boy so much. I can’t imagine what is ahead and life without him. No parent should ever have to endure the heartache of losing a child. I can’t describe this awful pain. I’ve never felt pain like it before. I’m going to try to be strong for Chloe and Donal and I know Cian will help us too. Our house was always full of chat and fun because of Cian. Peppa Pig was always on. He bossed me around the place and I loved it. He always told me he loved me. I’ll miss his lovely big hugs and kisses. I’ll miss our busy life. Anybody who met Cian or heard his story were touched by him and loved him and his beautiful personality. I am so proud of Cian. Last night hundreds of people gathered outside our house with candles and sent lanterns into the sky. They even sang one of Cians favourite songs “Twinkle Twinkle Little Star”. It was so beautiful.
Cian was always such a special little boy, now he’s a beautiful angel.
I hope you are happy little man wherever you are and I promise to keep your memory alive.  I know I’ll see you again.   Thank you for everything.”

          I love you so much forever. From your Mammy x

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My message to a mother who lost her little man, who never received his transplant

Lisa,  I cannot even imagine the pain you have within you at this time.  Your son Cian, touched my heart following his journey.  The love that the world showed, with all their support in helping  Cian in achieving the funds to be eligible to be able to place on the double lung transplant list in Boston.  I have many times, wrote about Cian on my site to help get his story out.  Many of my followers, sent messages of hope and prayers for your son.  Cian will always be in our hearts, and never forgotten.  I showed my husband yesterday the post I wrote.  As he was reading it, tears were rolling down his face.  He told me, he cannot imagine the pain a family must feel in losing a child.

I truly feel that, Cian’s journey should never be forgotten.  My daughter Lauren was placed on the heart transplant list on March 13, 2013.  She received her gift of life on December 30, 2013.  Just as Cian had a very rare disease, my daughter Lauren was also diagnosed with a very rare muscular disease called Laing Distal Myopathy.  We were told that, there are only five other people in the world with this disease also.   And  Lauren also has Scoliosis.  When she admitted into the hospital, Brigham and Women’s in Boston Ma., she was in heart failure at the time, that is when they brought up a transplant.

I truly feel people need to be educated about transplantation.  If you need one, you are not automatically place on the list, like the movies perceive.  So much is involved in the process of being accepted.  We were very close that Lauren was not going to be placed.  I can remember many nights praying that Lauren will be given the chance for a second life.

When I think of all the thousands of people who helped Cian raise the funds he needed, to come back to Boston to be able to be placed on the transplant list, it is very humbling.  My feelings, I believe our world needs to change.  If you have insurance, I find it unbelievable that the hospital in the USA wouldn’t accept it.  I know this will not bring Cian back, but I feel this needs to be addressed.

From one mother to another, sending prayers to your family from ours

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Love Lynne  1437940979_love_valentines_day_11

I have a follow button on my site, if anyone would like to follow my post.  Thank you

lrobitaillecld@aol.com

Cian is with the Angels now…. lost his fight on earth, but will always be in our hearts


Sometimes real super heroes live in the hearts of small children fighting big battles

Cian McDonnell-Lynch.  Lost his battle on October 5, 2015

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A quote from the family ;      “Our beautiful boy is with the angels now. He fought so hard. Heaven is so lucky to have him. We are broken hearted. His Mammy, Daddy and big sister Chloe held his hand until the end. Fly high our beautiful boy where there will be no more suffering or pain”.

I am writing this post with a very heavy heart.  I personally did not have the privilege to meet Cian, but I have felt a very strong connection to him and his family during his fight for life.  When I would read his mother’s post, I could relate and feel her pain in her words she felt for her child.  I have contacted with the family, through their site, to give my support and express prayers we’re being sent out to them.

Cian was admitted to Crumlin Children’s Hospital to have his procedures, which was a liver biopsy and PEG insertion.  The results of the biopsy was to determine, so that he may return back to Boston to be placed on the double lung transplant list.  Unfortunately, during his recovery, this brave little soul, endured complications with his oxygen saturation.

Cian was surrounded with his family.  His mother, father and big sister held his hand until the end..

Cian was loved by thousands of people.  The fundraising events to help raise the money for his transplant was heart touching.  During his short time on this earth, this little guy brought so many people from all over the world together.

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To his family: My family here in Massachusetts USA,  we are sending our heart-felt condolences to you.  Cian will always be in our hearts.

Below is a brief summary of Cian’s medical condition.

Cian  who was only four years old and his family 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
It affects one in a million. And Cian is actually at the more severe end of the syndrome.
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, and the oxygenated blood is not getting around to his whole body.
They were told, that it’s actually progressing very quick, so they we’re just really hoping that he’ll be accepted onto the transplant list here in Boston.
Cian was given only a few months to live.
Cian was the first child that they’ve seen with this condition, It’s just so rare. Cian needed a double-lung transplant would likely save his life, but he was rejected for one at a hospital in London.
Cian and his family  came to Boston Children’s Hospital as their last hope. The hospital begun running tests on Cian to determine if his body can handle the transplant.
The family’s Irish insurance policy will not pay for the surgery here in the states.
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. They were so close to reaching the amount that they would need to give Cian his gift of life.  Last count I believe they were at $600,000.

http://www.hopeforcian.com

Please keep Cian’s family in your prayers.

Cain is now with the angle’s, in the sky.  I would like to dedicate this song to Cian.

With much sorrow, Lynne & family  1437940979_love_valentines_day_11