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

Saturday, June 26, 2010

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 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.

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

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.

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.

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.

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

Greek Orthodox
The group supports donation of organs and tissues.

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.

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."

Donation is encouraged. There are no restrictions.

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

Organ donation is allowed and encouraged.

With Protestantism, there is respect for individual choice.

Seventh Day Adventist
The group strongly encourages donation and transplantation.

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.

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.

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

Thursday, June 24, 2010

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:


(miles/hr) (km/hr)
2.48 3.99
2.93 4.71
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):



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!

Wednesday, June 23, 2010

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.

Friday, June 18, 2010


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.

Friday, June 11, 2010

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.

Monday, June 7, 2010

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??

Sunday, June 6, 2010

Bike for Heart

This day was a very special day for me.

Today is the day for the Manulife Bike and Hike for Heart to raise money for St. Mary's Regional Cardiac Care Centre. This is the hospital that I was taken to the day of our wedding and also the hospital that determined my severe heart failure last summer and got me to Toronto General Hospital for the life-saving LVAD surgery.

I would like to take a moment to share my connection with this hospital. My first experience was the day of our wedding. This was certainly one of the worst types of situations anyone wants to be taken to a hospital. We were treated with an immense amount of respect and kindness. The small celebration that was created in efforts to salvage what we had left of our wedding made an impact we will never forget. The flowers were beautiful and allowed me to "toss my bouquet"; the non-alcoholic champagne let us toast our happiness; the cake was delicious and very personal. And the staff especially, what can I say about the staff, my words cannot express.... Thank you.

Many people feel pity and sadness for what happened to us at our wedding. We say that it was that event that saved my life. If I was not connected with St. Mary's I would not be here today. The attending physician that treated me after our wedding chose to set me up with heart failure education classes put on by the Heart Function Clinic at the hospital. These classes focus on living with heart disease including diet, medications, signs and symptoms to call your doctor, and other life-style considerations. The summer after our wedding was very challenging for me. I was having severe abdominal pain that prevented me from ANY physical activity, even grocery shopping. I had constant nausea and a constant feeling of fullness. I had several hospital visit across the province but the ER doctors AND my own cardiologist in Cambridge did not recognize these symptoms. It was not until I attended an education class at St. Mary's hospital that the nurse teaching the class understood my situation. Within minutes of speaking with her I was seeing a cardiologist and taken upstairs to be admitted. I was told I was in SEVERE heart failure and I needed treatment in a hospital setting right away. It was then my most challenging time began.

I stayed in St. Mary's for two weeks. The nurses, doctors and staff were all very kind and respectful. The little things that were done for me that were not part of the job description were the things that meant the most. Bringing in nail polish, giving extra dinner plates to my family, sharing thanksgiving dinner with my hubby, "freshening" the room, getting me a reading light, taking the time to explain my medications and complications, calling in at 3am to check on me, and many other kind acts. These are things that made my experience a little more personal. The staff was also able to admit when my condition was beyond their ability and connect me to Toronto General Hospital where I was approved for transplant and the LVAD. I am proud to be a patient at St. Mary's.

Anyway, the Bike and Hike raised funds for the Cardiac Centre in St. Mary's and it's the least I can do to show my appreciation. I was happy to attend with my hubby, Shaun, my parents and my sister-in-law (and co-editor of this blog) Shannon and her husband Jeff. Some of my strongest supporters. As a family, we raised over $2600! Thanks to all of our sponsors.

We all decided to do the 20km bike.


I rode the entire 20km with everyone else. It was a goal I really wanted to attain and I'm so proud to say that I did it. Not without the encouragement of my family and all of the volunteers along the way. The event was very well organized and we were treated wonderfully. I will update here when I confirm actually numbers of what was raised.

Here are some pics of us.

Jeff, Shaun, Shannon, Me, Carol (Mom) and Dave (Dad)

Pointing to my heart.