I Skydive So Others Can Stay Alive

How many Mom's will jump from a plane to support their daughter?? MINE!!

Carol, my Momma, is planning a fundraiser to raise money for Toronto General Hospital, specifically for transplant and mechanical heart research. The reason I am alive today. She will be skydiving at the Niagara Skydive Centre on Saturday June 18th. This is a small way we can show our appreciation for the hard work that has been done for our family.

Over time we have actually created a great team to jump with my Mom. I'm really excited!

Carol, my Mom
Steve, my Father-in-Law (maybe)
Dana - heart and double lung recipient
Janine - her father passed away and saved many lives by donating his organs
Paula and her son Matthew - Paula's husband is waiting for lungs

Our intent is also to raise awareness for organ and tissue donation. The Life Donation Awareness Association will host a booth at the event to share our cause and get conversations started. Jumpers have contacted local media and vendor support.

Please visit http://www.tgwhf.ca/sites/testyourlimits/skydivingforandrea/index.asp for more details and to make a kind donation to this life-saving hospital. It is important to note that all monies donated go directly to the hospital, the jumpers pay for their own jump.

I would like to take a moment to tell you that I have the bestest Mom anyone could ask for. She has been right beside me through my whole journey. She has altered her lifestyle to support me in every way. I haven't been the easiest daughter to deal with over the past while, which I'm sure you are all so surprise to hear, haha.... But my Mom has tolerated my moods very patiently and never made me feel like I was a burden. And to top it all off, she's jumping from a plane!! I joke that I would like to go up with her to push her out! That's my way of encouraging. I'm not gonna lie, it still makes me a little nervous, but it's something she has wanted to do for a long time and I support her dreams 100%! Thank you for being a great Mom. You are where my positive perspective comes from and my desire to help others.

We are hosting a day at the skydive centre in Dunnville and we would love to have anyone come out to support us and watch everyone land safely. Your support is very important on a personal level and also as a mission in my journey. Saving the lives of people that have traveled a path such as mine gives me strength to face my challenges with my head held high. This is my passion and with your support we can make life-saving a reality.

Thank you from the bottom of my second heart.

100th LVAD Celebration

What a milestone! One hundred lives touched with the use of a mechanical heart. I am proud to be one of those lives.

I was kindly invited to the 100th LVAD Celebration at Toronto General Hospital on May 11th, 2011. I was also given the pleasure to speak about my experience and express my gratitude to the medical staff and financial donors. Here are some great pics:

My hubby, Shaun and me.

My Mom, Carol, Shaun, me and my Dad, Dave

Dr. Viv Rao, heart surgeon, me, Dr. Heather Ross, cardiologist, David, another LVAD patient

LVAD patients in attendance

LET LIFE GO ON

To remember me...

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying.

At a certain moment, a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine.

And don't call this my deathbed. Let it be called the Bed of Life, and let my body be taken from it to help others lead fuller lives.

Give my sight to the man who has never seen a sunrise, a baby's face or love in the eyes a woman.

Give my heart to a person whose own heart has caused nothing by endless days of pain.

Give my blood to the teenager who was pulled from the wreckage of his car so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body, and find a way to make a crippled child walk.

Explore every corner of my brain. Take my cells, if necessary, and let them grow so that someday, a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weaknesses and all prejudice against my fellow man.

Give my sins to the devil. Give my soul to God.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

Robert N. Test
Cincinnati Post, 1976

Yippee Skippee!!!!

GRADE ZERO REJECTION!!!

Transplant Trot - London

The Transplant Trot was in London today to support Canadian Transplant Association (CTA). We walked or ran 5km in support of organ and tissue donation. Members from the Life Donation Awareness Association were a part of the event. It was a fantastic day! We wore our own t-shirts with our logo. CTA hosts the transplant games and raises awareness for organ and tissue donation.

Organ Recipients


This is Ryley, a sweet 5-year-old that had a heart transplant at 7months old. She was a part of the Trot with her Mom, Joanna and brother Landon. It was a pleasure to meet this family!

Back: Cathy, Janet, Glen, Bob, Dana, Grant

Middle: Betty, Josie, Andrea, Carol

Front: Joanna, Ryley, Kate, Chili, Shaun, Sadie

Go Team!!

One bad day cannot take the value of all the good days!

Biopsy #8 was today. Since I had a grade zero rejection last month, I graduated to go to St. Mary's for this biopsy. Yay! It's nice to go see my friends at St. Mary's.

There were some challenges during the test this time. I have heard the stories from other transplant patients of having difficulty getting into the jugular. It's been smooth sailing so far so I knew there had to be difficulties at some point. This was the day. I guess it was a combination of things, there was scar tissue from having so many biopsies, my pressures were quite low (making my vein small) and they need to get to know my anatomy because everyone is different. They needed to freeze my neck a number of times and give me a sedative to help me relax. My neck was quite swollen from all the poking. There is pain in my shoulder and right chest from hitting nerves. The staff were really good to me through the challenges. They did everything they could to make me as comfortable as possible. I really appreciate their compassion.

Even though my pressures were low, they were good. My heart is doing great in there!

A Movie Star!

Trillium Gift of Life Network is making a major change in the organ and tissue donation world. I'm very excited!! Online registration is on the horizon!

The current system for registering consent is rather cumbersome. If a person has an old red and white health card, they need to take it upon themselves to go online, print off a form and mail it to Service Canada. If a person has a new picture health card they may be asked at Service Ontario when they renew their health card, however, the environment is not the most appropriate for making such a big decision. With the new online registration all they need to do is go online, click click, done. I really feel that this will impact the number of Ontarians registered to donate their organs and tissues and in turn, save more lives. This change is long overdue and long anticipated.

So, to promote the new online registration, TGLN asked me to be a part of their new website beadonor.ca that will launch later in June when online registry is live. They want to tell individual stories to motivate others to register. I agree, when people can see the real success of transplants and the lives it impacts, they are more likely to say yes.

I was treated like a movie star! It was quite an exciting day! They asked me to bring 3 changes of clothes with specific requirements, two pairs of shoes, a belt, pictures and any relevant "props" to assist in telling my story. I had a big handful walking into the studio! As you can see from the pics below, I had my makeup done and they picked out my wardrobe. (I match wonderfully with the plant on the side table.) There was a big team involved, I would guess about 15 people in the studio. Such a nice group of people! I felt very comfortable.


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NOTDAW

National Organ and Tissue Donation Awareness Week, NOTDAW, is April 18-24 this year. The Life Donation Awareness Association took on many endeavors and touched the community from all different directions.

April 15, 16 and 17 there were information booths hosted at three malls in the Region of Waterloo, Cambridge Centre, Fairview Mall and Stone Road Mall in Guelph.

Cambridge Centre, Andrea, Kelly and fellow Kidney Donor (passer-by)

Stone Road Mall Team

Team members from the group went to several high schools across Waterloo and Wellington. They made great efforts to raise awareness amongst the young people of the community. I'm so proud of them! They had great success! The intent was to have students in each school take it upon themselves to design some kind of campaign. Suggested ideas included "Wear Your Green", "Living Green Ribbon" and competitions between schools. As you can see from the pic below, many students embraced the challenge!

Preston High, Wear Your Green

My good friend and fellow organ recipient, Carol, has taken a project on herself in elementary schools. This is a fantastic program I can't say enough about. She has designed a class lesson for grade 7 students that the teacher can "plug and play". She has included all details of teaching the project including a marking scheme. The students really enjoyed the project and the parents especially learned a lot about organ and tissue donation. I'm so impressed with the work Carol has been doing and I can't wait to see her progress next year.

Sample Grade 7 Project, used throughout the community to raise awareness

Under the guidance of Judy, the donor coordinator for Waterloo/Wellington, we hosted information booths at three hospitals, Grand River, St. Mary's General and Guelph General.

St. Mary's General Hospital information booth

Andrea with the hospital President, Don Shilton

I would like to share that the main purpose in posting these awareness projects is to show everyone what is possible to make a difference and save lives. These projects are simple to implement in any community. We have been working with no funds so far, just the incredible support of Trillium Gift of Life Network. They supply us with the literature and give-aways for our events. All you need is the volunteer power to coordinate. If you would like to try to plan a project in your area, I would love to give you some advice and support. Contact me at andrea@lifedonationawareness.com.

"A Gift of Love", St. Michael's Parish Conference

In efforts to dispel religious misconceptions surrounding organ and tissue donation, my good friend and fellow organ recipient, Carol, along with a team from four parishes across Waterloo Region (St. Michaels, St. Louis, St. Agnes and Our Lady of Lourdes) planned an organ and tissue donation awareness conference. Titled "A Gift of Love", the panel consisted of Versha, Carol, Claire, myself and Father Tim.

Versha is the Vice President of Operations of Trillium Gift of Life Network (TGLN) and spoke about TGLN, statistics in Ontario and some of the misconceptions. She did a wonderful job and made clear several important points. Carol spoke about her journey to her transplant and what it is like to wait for an organ. She invited Janet, Pam and Ray to share their personal opinion of waiting for an organ since they are currently listed at this time. Claire shared her story of her son that passed before his time at the age of 4 and saved many lives by donating his organs. Claire shared her story with grace. While it is a difficult story to hear, she certainly provided an important perspective. Father Tim is a double cornea recipient and also detailed the catholic perspective of organ and tissue donation.

"I have come so that they may have life, and have it more abundantly" John 10:10

Carol and the team did a fantastic job planning this event and touched many lives. She has set an example for future events the Life Donation Awareness Association can work to plan.

I was very excited to see so many of the members from the group come out to help and support this event. It's really wonderful how people come together to make a difference.

Janet, Pam and Ray

Presentation Panel: Father Tim, Claire, Andrea, Carol and Versha

A Women's Day

I had the honour of speaking at this event, A Women's Day, for the Federated Women's Institute of Ontario. A wonderful event attended by about 200 women from across the Region. I was invited by Judy and Moira, two nurses working for Trillium Gift of Life Network.

I felt a sense of belonging to this group because I am a woman in male dominated field, continuously working towards equality. As an engineer, women are still a minority. My civil class in university was about 1 woman to 4 men, which is actually high for most engineering classes. Mechanical Engineering, for example, was closer to 1 woman to 20 men.

Judy and Moira kicked-off the event with details of organ and tissue donation. They shared the details with great compassion and clarity for the cause. Thank you ladies for sharing your knowledge and for what you do.

Joining me to speak about our experiences was Cecily and Pam. Cecily shared her story about Kyla, her daughter that passed away at 16 years old. Kyla was a beautiful young woman and passed long before her time. Cecily and her family decided to donate Kyla's tissue and her gifts touched many lives. It was an emotional story that had everyone in the room reaching for their tissue. I was so glad to hear her story and share my appreciation for Kylas gifts.

Pam is my good friend and pump-pal. She shared her story about living on the LVAD and what's it like to wait for an organ. Both ladies did a wonderful job.

Also, joining me for this event was my wonderful supporter, my Mom-in-law, Dianne. She has been there for me through the whole journey. She has held my hand through the bad times and cheered with me for the great times. Thank you Mom for always being there for me.

Moira, Judy, Pam, Cecily, Me and Dianne

No Rejection!!

Whoop!! Yay!! Yippee skippee!!! Grade ZERO rejection!


Out of 8 biopsies, this is my second grade zero. Finally. The docs just lowered my tacrolimus from 4+3 mg/day to 3+3mg/day. I hope this will help with the tremors.

Working Hard to Save Lives

Today was a special day for me. I had the opportunity to meet the people that work for Trillium Gift of Life Network. These individuals work very hard to save lives. There are the nurses that deal with the donor families in their time of grief, the call centre staff that converse with the doctors and medical professionals, those that work on the transplant side to ensure the recipient's needs are met, and the others that coordinate the paperwork and organization of the overall process.

How do you thank the people that work so hard to make transplants possible?

I feel a great deal of compassion for this group. It is difficult to express my gratitude.

I was invited to this event by my good friend Judy, who is the donor coordinator for Waterloo/Wellington. We have worked closely over the past while to get the Life Donation Awareness Association off the ground. Judy has been a wealth of information. She has also given me a glimpse into her work, dealing with donor families. I have a great deal of respect for Judy and the other nurses working in that position especially. The emotional challenge they face to see many tragic events must be difficult. To thank them does not express what they deserve.

I was so lucky to meet the nurse, Katherine, that dealt with my donor family. Such a pleasure. Thank you Katherine. I felt a strong sense of closeness to Katherine and a sense of connection to my donor family through her. (insert tear)

I know what most of you are thinking, did I learn anything about my donor? It is the law in Canada that I am not allowed to learn details of my donor or donor family. I did not ask any questions. I feel that my donor family is entitled to their privacy and if I'm supposed to know something, I will find out. I sent the family a thank you letter and if they choose to respond, I would be especially happy to hear from them. However, if they choose not to respond, I respect and appreciate them just the same.

I was also lucky enough to go into the call centre tucked in the back of the Trillium offices. These are the individuals that deal with the medical professionals over the phone to ensure the donation/transplant process is carried out efficiently. Another very important part. I actually met the lady that dealt with my specific case. Another great pleasure.

Judy has shared with me that when a case is coordinated, the nurses on the donor side loose touch with the recipient part of the process. They typically don't get to know much about the recipients at all. Since I previously had a connection with Judy and I'm Miss December in the TGLN calendar, Judy and the other staff took advantage of this blog to follow my progress. That is such an honour for me and I owe appreciation to my sis-in-law, Shannon for keeping it updated.

I feel very honoured to give the TGLN staff a glimpse into a recipients life and success. I only wish that I have given them encouragement in their career and hope to share with the donor families.

What have I been up to lately?

Since I haven't posted anything in a while, I thought I would share what I have been up to lately.

I've been very busy getting the volunteer group going. The Life Donation Awareness Association is up to about 40 volunteers! The response and support has been amazing. I'm so lucky to meet all of these wonderful and encouraging people. Here's our logo!We have established a website. Thanks so much to Kelly Baker from Oak Tree Media.

We also have many events planned for NOTDAW, National Organ and Tissue Donation Awareness Week (April 17-24, 2011) including information booths at our local malls (Cambridge Centre, Fairview Mall and Stone Road in Guelph) as well as the local hospitals (St. Mary's, Grand River and Guelph General). We will be giving away Lifesavers to encourage people to our booths. The hospitals will have a challenge between them to see which one can register the most people. A little competition can go a long way.

I also have several speaking engagements coming up. I will be speaking at the Federation of Women's Institute of Ontario event this Saturday March 26th. I am honoured and excited to be a part of this event. Another event coming up is at St. Michael's Parish Centre in Waterloo. This event is open to the public and I will be speaking along with a wonderful donor Mom, another grateful recipient and the Vice President of Operations from Trillium Gift of Life Network. Please see Life Donation Awareness for more details. If you are in the area, this is a great event to learn more about organ and tissue donation as well as to get an insight into real lives touch by transplants.

The group has initiated many other awareness events, including corporation presentations, community service group presentations, parade involvement, support groups, training and involvement for local schools, and many other directions. Wow! We are doing quite a lot!

On another topic, I've been feeling great lately! My body is adjusting to the medications and I've been exercising. Cardiac rehab has been very useful. I go twice a week and have integrated weights into my routine. I have also registered for a weekly yoga class and a weekly zumba class! I'm so excited! It feels so good to get moving again. I can't wait to get on my bike!!

Shaun and I have been making plans for summer vacations. He's getting his boat all fixed up to visit our cottages. My niece and nephew are very excited to throw me in the water now that I can swim again. Uh oh.... what have I got myself into...

The ability to plan ahead is fully accredited to my donor and donor family. Without them, I would not be able to plan or have hope for the future. Without them, I wouldn't be here.

I BELIEVE

This video is very encouraging for me and send shivers through my body when I watch it. Follow the link here to view the video of a flash mob at the Eatons Centre in Toronto.

I Believe
by Yolanda Adams

They said you wouldn't make it so far uh uh
And ever since they said it, it's been hard
But never mind that night you had to cry
Cause you have never let it go inside
You worked really hard
And you know exactly what you want and need
So believe and you can never give up
You can reach your goals
Just talk to your soul and say…

(Chorus)
I believe I can
I believe I will
I believe I'll go on dreams that are real
I believe I'll stand
I believe I'll chant
I believe I'll grow real soon and
That is what I do believe

Your goals are just a thing in your soul uh uh
And you know that your moves will let them show
You keep creating pictures in your mind
So just believe they will come true in time
It will be fine
Leave all of your cares and stress behind
Just let it go
Let the music flow inside
Forget all your pain
And just start to believe

(Chorus)

Never mind what people say
Hold your head high and turn away
With all our hopes and dreams
I will believe
Even though it seems it's not for me
I won't give up I'll keep it up
Look into the sky
I will achieve all my needs
I will always believe….OoOo