Victor Davis Memorial Ride

As a volunteer with Trillium, I was invited to be part of the Victor Davis Memorial Ride. Here's a part of the invitation, I couldn't explain it better myself...

"Victor Davis was an Olympic swimmer who represented and won medals for Canada at two separate Olympic games. He was also an organ and tissue donor. This summer his brother, Greg Davis, will be cycling from Guelph to Quebec City to promote the importance of registration of organ and tissue donation consent in memory of his late brother, Victor Davis.
The Victor Davis Memorial Ride will celebrate transplant recipients participating at the Canadian Transplant Games in Quebec City, August 9-14, 2010. Greg will be stopping at several hospitals along his cycling journey to increase awareness for organ and tissue donation."

It was a pleasure to meet Greg Davis and other organ recipients at this event. I think I was the only one actually waiting for an organ.... Not uncommon.

Learn more about his ride and Victor Davis HERE.

Here's a few nice pics of Greg and the group riding with him.

And of course, my supporters!!!

It's a great thing that Greg is doing. As a future recipient, I thank you Greg. Your hard work is making a difference.

What would you do to raise awareness?

As part of a heart transplant support group out of Toronto called Heartlinks, I was invited to a presentation by Dr. Heather Ross (my cardiologist at the Peter Munk Cardiac Centre in Toronto) about her recent journey to the North Pole.This was another one of her "Test Your Limits" adventures to raise awareness for organ and tissue donation. A heart transplant recipient, Dale Shippam joined her along with another doctor from Montreal, Dr. Michel White. They wanted to prove to the world that a heart transplant doesn't prevent people from living an extraordinary life. And that they certainly did.

Visit the Test Your Limits blog here for more details on their journey, the team and their support.

There was one story Dr. Ross told us that has stuck in my mind. They were skiing in the freezing cold weather and they got hit by a storm. They set up their tents and waited for the storm to pass. It was a very serious and scary time. She said that it was even noticeable in the guides body language that the situation was concerning. She was worried that they may never get out of the storm. Dale, the transplant recipient said something to her that certainly changed her outlook. He said, "Now you know what it's like to wait...." As a doctor, she has experienced the wait for a heart transplant in a different way, never the one waiting to "live or die". That seemed like a very powerful moment. I'm so glad she shared it with us. They waited in their tents, doing virtually nothing for 60 hours.

As a thank you from the Heartlinks group, Dr. Ross was given a token of appreciation for sharing the details of her journey with us. It comes with a little story. On her travels, one of the biggest concerns they had was running into a polar bear. They carried a gun and were always conscious of the fact that they could come around at any time. Thank goodness they never ran into a bear. So as a little gift to Dr. Ross a Heartlinks member dressed up as a polar bear to give her a safe wildlife experience. It was really funny and she loved it.

Big thanks to Dr. Ross for sharing her story and for doing such an amazing thing to raise awareness for a cause that has saved the lives of everyone in the room. And a big thank you to the Heartlinks group for hosting such a great event and getting everyone together.

Walk in someone else's shoes.

There is a new TV show on that started about 5 weeks ago. Those of you that like medical drama and even those that just like to see what it's like to walk in someone else's shoes, this is the show for you. Boston Med. Thursday nights at 10pm. You can check out their website here.

There have been events such as a police officer shot in the face, two lung transplants, removal of a brain tumor, babies with heart defects, a twelve-year-old hit by a car, an eight-year-old with cardiac complications, several heart problems and none-other-than, heart transplants.

Last week there was a young girl, even younger than me, that underwent a heart transplant surgery. It was incredible to watch. You can watch this episode here.

And just last night there was a man brought in with serious cardiac complications. While the cameras were filming, the doctor went through the process of approving him for a heart transplant. This was a crazy thing to watch. I will tell you that not all stories have a happy ending. It's a reality check. You can watch this episode here.

Don't forget to put a box of kleenex close to you before you start watching.

Sharing Inspiration

There's an article in the Toronto Star I am so proud to share. My good friend and ex-pump-pal Jenn shares her story. She is an inspiration to all of us enduring something difficult. She is always open and proud to portray her appreciation for life, every day.
Jenn was my mentor when I was implanted with the LVAD and I remember the first day she came to the hospital to visit me after my surgery. It was 2 days after my surgery and I expected to just live with the intense pain. She walked in with my nurse and when introduced, I thought, yeah right, she doesn't have an LVAD. Jenn looked like a normal person. She gave me something to look forward to. For a while, after every concern about my limitations I said, well, Jenn can do it!
Thank you Jenn for being my inspiration.
You can read her story here.

Let's be real.

Alright people. It's been two hundred and sixty-nine days today. And I'm starting to loose it.

We all know that I'm always positive and I make efforts to channel my passion in the right direction. Blah, blah, blah. Right now, let's be real.

This is frustrating. I'm waiting, and waiting, and waiting..... It's time for the next phase of my life.

People often ask me. What is it like to wait?

My answer a few months back would have been - Oh it's not that bad. I keep myself busy and try not to think about it. I have picked up a few hobbies and try to focus on short term goals.

While that is all true, that's not the part I want to express today.

What's it like to wait? Well I feel great and I want my life back. I'm ready to go through it all again just so that I can get to the normal parts of life. I'm ready for the rush drive to Toronto, the catheter in my neck, the IV's, the hospital food, the open-ass gown. I'm even ready for the open heart surgery, the sternotomy, the arterial line, the drugs, the ventilator, the pain, the intense pain, the constant sleeping on my back, the nurses at 6am. I'm ready. Let's get this show on the road.

I've been told I'm close, if not at the top of the list. I was told that about 2 months ago. My list is quite different. As most of you probably know, the list depends on several things. Such as, blood type, antibodies, chest cavity size, body weight, and other factors I don't really know about. So I'm smaller than the average bear and my blood type is the most common blood type. I am more than happy to wait if someone comes in that requires an immediate transplant. I feel good and I can wait. I have to keep telling myself that's why I'm waiting. It's not because people won't register to donate or they just won't donate.... I'm thinking positive!

Attitude is 10% what happens to you and 90% what you do with that.

For five minutes I'm going to dwell on that 10%.

Alright I'm back. Anyone want to go for a bike ride?

More Members of the LVAD Club

It's incredible how widely know the LVAD is. I just heard that Dick Cheney, a former vice president recently had the LVAD implanted. His situation is quite different. Check out the links below.

AOL News

Fox News

I also found out that there were 5 in-patients in Toronto General Hospital that were implanted with the LVAD. To me, this means that these 5 lives were saved and there must be more funding to the program to make this possible. Whether it be direct donations or decisions made by staff and doctors, they should be proud that they saved another 5 lives.

If those patients have connected with my blog, I would like to say welcome to our elite club! You are very well taken care of and I wish you the best. Send me a message, I would love to connect with you.

T-SHIRTS

In leiu of my recent experiences, I have been busy exercising my creative side and designing t-shirts. The website is:

www.organsbydesign.wordans.com

You can check out the t-shirts I have created or you can use my designs to create something a little different to suit your needs. There are several shirts to choose from and other standard designs you can use on your shirts as well.

I am just an email away if there is something specific you are looking for. I am adding products regularly. If you don't find something, check back a little later to see if there is something new that you like.

We need to make known the importance of organ donation. Many lives are affected and most of the population just doesn't understand until they are in the situation. Please check out my products and support the cause. I have been waiting for 255 days for my heart, we need all the help we can get.

Thank you so much.

Cultural and Religious Perspectives on Organ and Tissue Donation

Below is information taken from a document created by Trillium Gift of Life to share with those wishing to learn more about cultural and religious perspectives on organ and tissue donation. This is not intended to be conclusive, your own beliefs are exactly that, your own. I do not intend to offend anyone, this is for information only. Any questions you have related to this information, please discuss them with your religious leader and/or Trillium Gift of Life at

Trillium Gift of Life Network
522 University Avenue, Suite 900
Toronto ON M5G 1W7
Telephone: (416) 363-4001 or 1-800-263-2833
Email: info@giftoflife.on.ca
Web: www.giftoflife.on.ca

Culture and religion play a significant role in end-of-life experiences, including how people respond to illness, how grief is demonstrated, what rituals are important at the time of death and which members of the family are present.

Most major religions support organ and tissue donation as an honoured and compassionate expression of generosity and love. Beliefs about tissue donation vary as some groups may consider tissue donation life enhancing, and distinguish it from organ donation, which is more often life-saving.

Amish
Amish consent to donation when it benefits the health and welfare of the transplant recipient. They are reluctant to donate if the transplant is unlikely to succeed or if organs will be used for research.

Baptist
With this religion, organ and tissue donation is a matter of individual choice.

Buddhism
Buddhists have no official position on organ or tissue donation. It is a matter of personal choice and of the attitude of each school or tradition of Buddhism.
The Southern tradition permits autopsies and organ/tissue transplants; they believe that rebirth occurs immediately when a person dies. The Northern tradition believes that there is an intermediate state between "incarnations". They avoid movement or touching of the body for eight hours.

Catholicism
Catholics encourage donation as an act of charity, and as a decision that belongs to each individual. There should be no undue pressure on someone to donate an organ. Ethical considerations must be taken into account. There can be no commercialization of human organs.

Christian Science
There is respect for an individual's choice.

Confucianism
They are traditionally against organ donation, but brain death was formally recognized in Korea in 2000 for the purpose of organ donation. There should be no damage to the body as a whole.

Episcopal
There are no restrictions on giving organs or tissues for transplant.

Greek Orthodox
The group supports donation of organs and tissues.

Hinduism
Adherents to Islam strongly believe in the principle of saving human life. Followers permit organ transplantation as a priority in saving human lives - as long as the human body is respected and treated with dignity, and the sanctity and protection of human life are paramount; a person must give freely and without undue pressure, for the purposes of saving a person's life or to enable someone to perform an essential life function.

Jehovah's Witness
Donation is a matter of individual choice. All blood must be removed from organs prior to transplant.

Judaism
All four branches of Judaism support and encourage organ and tissue donation. Within Judaism, there is a general principle that the "saving of human life takes precedence over all other laws," including any delay in burial.
Organ and tissue donation is encouraged not only "for humanity's sake," but also "for God's sake, as a supreme expression of Godliness, of true, ultimate sharing: a religious act par excellence."

Lutheran
Donation is encouraged. There are no restrictions.

Mormon
With Mormonism, the decision to donate an organ is a personal choice.

Presbyterian
Organ donation is allowed and encouraged.

Protestantism
With Protestantism, there is respect for individual choice.

Seventh Day Adventist
The group strongly encourages donation and transplantation.

Shinto
Followers are extremely cautious with regard to organ and tissue donation; families are concerned that they do not injure the "itai" - the relationship between the dead person and the bereaved family.

Sikhism
Sikh philosophy and teaching place great emphasis on the importance of selfless service to others, and the performance of "noble deeds." The belief is "the physical body is a temporary abode of a person's soul, and it is the soul that is one's real essence." Organ and tissue donation is supported.

Taoism
There are no objections to the use of parts of the body after death.

Cardiac Rehabilitation Stats

I thought I would post my statistics from cardiac rehabilitation to quantify my physical improvement over the past few months.
Two tests were done to evaluate the changes. The first one is a six minute walking test. I simply walk on a level floor for six minutes and measure the distance I walked. The second test is muscle test to measure the strength in different muscles. I'm don't think it's an exact measurement but the numbers are interesting to compare. Check it out.

Six Minute Walking Test:

DATE		DISTANCE		SPEED
		(m)		(miles/hr)	(km/hr)
3-Feb		392		2.48	3.99
8-Mar		462		2.93	4.71
16-Jun		543		3.45	5.56

There was about a 20% increase from February to March and 38.5% increase from February to June. A significant improvement. During the last walking test I asked the kin if I could run for the last few minutes! Unfortunately I'm not supposed to run with an LVAD so I couldn't do it. Maybe next time when I have my heart!

Muscle Test (pounds/sq. in):

	RIGHT				LEFT
MUSCLE	10-Feb	14-Apr	16-Jun		10-Feb	14-Apr	16-Jun
Arm Biceps	23	31	29		24	24	27
Arm Triceps/Deltoids	21	20	29		27	20	25
Leg Iliopsoas	29	31	33		28	33	30
Let Quads	24	23	44		16	25	36
Leg Hamstrings	30	28	36		30	30	36

Notice the significant improvement in my quads and hamstrings over the past couple months. I attribute that to the biking I've been doing regularly. The arms improved over the first couple months but have remained similar since. They aren't big muscles so there isn't as much room for improvement. But I'm increasing my weights and tolerance.

Participating in cardiac rehabilitation has changed several things. Most importantly, my energy level has improved. It's great! I get up earlier. I don't fatigue as quickly. And, of course, I am able to do things that I certainly couldn't do before rehab and for the 1.5 years prior to implanting my LVAD. Such as biking and walking the dogs. I can garden and pull dandelions. Last summer I couldn't even pull one with the puller thing. This summer I've pulled about 500! (Stupid dandelions!)

Well I'm really happy about my improvement and overall I feel much better. I would highly recommend participating in rehab, if your doctor allows. It's a great way to exercise in a controlled environment. And the staff are a wonderful group of people!

Am I seeing double??

I found this young woman from Texas in a very similar situation as me. Grab some tissue and watch the video here. It's crazy what people endure.

Pump-pal!

I spent some time with a special pump-pal today. Pam was given her LVAD a few months back and also lives in Cambridge. The world is incredibly small. Her heart disease is the same as mine, idiopathic dilated cardiomyopathy. She has been living with heart disease much longer than me. I guess over the months prior to implanting the LVAD her condition deteriorated quite quickly. Pam really looks great. You would never guess all the things she has endured.

I really enjoyed spending time with her. She carries her LVAD in an over-the-shoulder-type bag, off to one side. And she told me of an amazing invention. She has split the bottom of her shirt on the right side, hemmed it, and put Velcro on it for easy removal. Such a great idea! I could use this idea to wear dresses. Brilliant!

It was nice to talk with someone that has been through the same thing. With there being only about 7 people out of Toronto General Hospital with an LVAD, it's not easy to get two of us together. Funny how 2 out of 7 are in Cambridge.

Here's a nice pic of Pam and me.

Getting into highschools.

I was invited to speak to a high school class today at Huron Park Secondary School in Kitchener.

I was invited by a new friend, Bob, who is 4 years post liver transplant. I got to know him a little during National Organ and Tissue Donation Awareness Week. It was a pleasure to meet him. A liver transplant is not an easy thing to go through. He has shown strength and perseverance to get to the healthy place is in today. It is wonderful to look at him and see the success after a transplant.

The high school teacher, Mrs. K, is a wonderful person on the other side of the coin. She lost her daughter Kyla when she was only 16 and decided to give the gift of life to several other people. Mrs. K was able to donate Kyla's tissue and eyes to give other people a new chance at life. Her legacy will live forever. I cannot begin to share the kindness Mrs. K and her family have shown. It was an honour to meet her and learn of Kyla story. Kyla was an amazing young women. Every year Mrs. K hosts a special weekend hockey tournament for young women. This is an event to raise awareness for organ donation and money Trillium Gift of Life. This tournament is a legacy of Kyla and continues to express the generosity of Mrs. K's family.

So to connect the dots, Bob was a volunteer for Trillium at Mrs. K's hockey tournament.

The class that Mrs. K teaches is a health/phys. ed. class. As I understand, it is a newer program and as a part of the curriculum the students are to learn about organ donation. What a wonderful way to integrate this into the schools. Not all high schools offer this course, so it has a long way to go, but this is a great start. This is obviously a topic that is important to Mrs. K and she chose to make a lasting impression on the students by asking Bob to come to the class to speak. Since Bob has the perspective of having a transplant, he thought it would be good for the kids to hear from me, someone waiting for a transplant. It is so wonderful that he thought of me.

The class was very polite and attentive. A bit of Kyla's story was shared, Bob shared his story, I shared my story and we discussed organ donation and the importance of registering. I really enjoyed being a part and allowing to influence more people to sign their consent.

Here are some pictures of Mrs. K and Kyla, Bob and myself. (Check out the amazing green pillow with the ribbon!!)




It was really special to meet Mrs. K. I can't image how hard it would be to loose someone so close. I admire her ability to take her loss and try to make a difference. She is certainly doing great things in Kyla's memory. On behalf of all the recipients out there, thank you to Kyla, Mrs. K and your family. You make me want to try harder to make a change and help others.

Did I convince them?

I have begun invading the world.

Well it starts with a lab at the University of Guelph. Haha!

I was invited by my sister-in-law (Amanda) who works for my father-in-law (Steve) to do a talk about organ donation for young adults that work in the lab. There were about 90-100 people, mostly students from what I understand. I put together a little board with pictures of the LVAD, my ICD, my Xray and significant statistics about organ donation.

They were a great audience. At first, very serious. I guess, people don't understand how "casual" I am about my circumstances. I try not to take it seriously. I don't want anyone to feel bad about what has happened to me. I want them to be convinced to sign their consent for organ and tissue donation. That's all I ask.

I think I did convince most of the students. They seemed to be very interested and asked some interesting questions. I find it a benefit for me when people ask questions because I can learn new things with my audience. I love to learn new things.

I really do enjoy doing these "talks" for people. When I can keep it casual and light I find it not too stressful. Stress is not a good thing for me or Ivan. If anyone knows of a place that I can do a talk to share my story and, most importantly, convince more people to sign their consent, send me a message and we can discuss it further.

I feel so important!

I had the honour of attending a very important event today. Hosted at Toronto General Hospital, Peter Munk Cardiac Care Centre this event was for a significant debate. The invitation is included below, which describes the debate and significant guests. Click on the link to to see more information about the Munk Debates.


To begin discussing my experience I would like to briefly mention Mr. and Mrs. Peter Munk. Peter Munk is a prominent man for many reasons. One reason being for his donation of $37 million to Toronto General Hospital to fund the Peter Munk Cardiac Care Centre. Without this generous donation for the centre TGH would not have the abilities for cardiac care it has today. Simply put, I would not be here.

I was so excited to meet this kind couple that my Dad and I decided to make a gift to show our appreciation. My Dad is a machinist and very handy with metal and wood. We decided on the words together and he made the plaque, as shown below. It turned out great and I really hope they like this gift and will understand how impactful their generosity is to me, and many people. If you can't read it, it says:

Peter Munk
Cardiac Care Centre

Gift of love
Gift of life
My second chance

Andrea Clegg
LVAD/Transplant Patient 2010


We were lucky enough to snag a photo with Peter Munk. He is a very busy man and I strongly appreciate this moment he took for us. I gave him the plaque but he did not have a moment to open it. He genuinely appreciated the gesture and I'm sure he and his wife will like the gift.


Another man I was honoured to meet was Dr. William Frist. He came to Toronto as a debator from Tennessee. Dr. Frist is a former US Senator and a nationally recognized heart and lung transplant surgeon. As I understand, he has performed over 150 heart transplants. Despite his intimidating list of successes he was very kind and genuinely interested in my LVAD.


We met several other important people but unfortunately I could not snag a photo of everyone. This day passed by so quickly and I had so many other people to thank for their donations. There were more people in that room I wish to convey my appreciation to. I certainly hope to attend an event like this again. Here's a pic of Shaun and I in the new lobby for the Peter Munk Cardiac Care Centre. Don't we look smashing??