A powerful journey from living with an artificial heart to a heart transplant....

Friday, April 29, 2011

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!

Thursday, April 28, 2011

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.


Sunday, April 24, 2011


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.

Wednesday, April 6, 2011

"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