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

Friday, October 22, 2010

There is so much to be happy about. One year anniversary!

It's been a whole year now that I've been on the list for a heart transplant.

I sometimes say, I'm not sure if I should be happy about it. I said this to a friend of mine and she had a reply I will always remember. She said, "I think there is a lot to be happy about." And she is totally right. There is so much to be happy about. The waiting so long means that I continue to live in limbo, always waiting. But it also means that I've been given another year to live.

I remember when the nurse came in to tell me that I was approved for a new heart. I try my best to be strong at all times but that moment went straight to my heart, literally. It is a very stringent process to be approved for the transplant list. Unfortunately there are many people that don't get approved. They assess your overall health and mental state. Can you physically and emotionally accept the transplant. Well, on Thursday October 22, 2009 they told me I was given the chance to live. Live on. I was aware of the risks but I was convinced that I would succeed. And I will! Thanks to the evolution of science, the doctors and all of their staff. I will live on. That moment gave me a feeling of hope and strength. Hope that I will do the things I love to do again. And strength that I can push through whatever comes next. Live on. Live to be with my amazing husband and loving family. Live to make a difference for other people waiting for transplants, waiting for their life to change. Live forever thankful for the journey I have taken, never to resent it. Live happily. Live strong. Live completely. I will live on.

Tuesday, October 19, 2010

Kindness from the Heart

Shaun and I were guests at a wonderful wedding this past weekend. My beautiful Aunt married a wonderful man. I'm so happy for their union. The day was amazing and the party was so much fun! I danced the night away! Of course, I wore a dress with the zipper in the side and disguised Vito again.
My Aunt and her new husband decided to do something different at their wedding that touched both my heart and my mechanical heart. They specifically requested no gifts but in leiu of gifts they asked their guests to donate to the Heart and Stoke Foundation. (I'm tearing up just writing this.) That's not all though. They also included in their invitation package forms for guests to register their consent for organ and tissue donation. Their kindness is so touching.
I want to send a big thank you to my Aunt and new Uncle, you have made a difference. You have reached not only those with heart disease or those waiting for an organ transplant, but you have reached their families and their friends. This kindness continues endlessly. Thank you.

Thursday, October 14, 2010

Toronto Appointment

I had a regular appointment at Toronto General Hospital today. They did an echo, took bloodwork, read Vito (my LVAD) and did the normal heart stuff.
Since there are 15 patients with LVADs out of TGH now, they have a regular clinic just for LVADs. The system now includes a visit with the VAD nurse, the cardiologist and the cardiac surgeon. I think it's great because I enjoy all of their company!
It was a nice appointment for many reasons.
Firstly, there are no concerns. The only issue I questioned them about was that Vito has made a few unusual sounds lately. Twice now he beeped randomly and by the time I could get him out to check the controller, he stopped. It didn't quite sound like a battery alarm. I couldn't figure it out. The nurse read the controller and didn't find anything to be concerned about. So I keep myself prepared for changing the controller if the need arises.
Secondly, a traveled to TGH with my good friend and pump-pal from Cambridge and her great husband. I really enjoyed the time we spent together.
Third, I got to see more LVAD patients. One in particular was implanted only a couple months ago and I would not have guessed. She looked great!
And last, but not least, I got to see many people on the LVAD and transplant team. I very much enjoy seeing them, especially when I do not have any concerns and we can have normal conversations.
Big thanks to the hardworking teams at the Peter Munk Cardiac Centre. You are all a huge part of saving lives and making a difference.

Wednesday, October 13, 2010

Life Donation Awareness Association

I am on a mission to find passionate volunteers in the Waterloo/Wellington area.

I have been empowered by my illness to make a change. Organ and tissue donation has become a passion of mine.

I would like to start an association, the Life Donation Awareness Association of Waterloo/Wellington, to promote organ and tissue donation. We will work closely with Trillium to pursue and execute awareness events and integrate our cause into the community. This idea has been very successful for the London Gift of Life Association. Awareness is the most challenging barrier to save more lives with organ and tissue donation.

I have sent out invitations to volunteers in the community and I really hope to get some response. I strongly believe we can make a significant impact on organ and tissue donation.

If we work together through our challenges, we can make a difference.

Transplant Essay

I wanted to share this essay from the Globe and Mail. It strongly conveys many feelings about organ and tissue donation. Read it here.

Tuesday, October 12, 2010

The Photographers are moving in!

I have been asked by Trillium to be a part of their 2011 calendar! I'm so excited and can't wait till it comes out! Unfortunately I can't share the picture yet, legal stuff, but I can tell you that I'm Miss December!

I'm happy with December. It's a busy month so I expect people will be looking at me quite a lot!

The photo shoot was very interesting. They tried to keep it simple and full of impact. In my opinion, it was definitely that. I'm happy with the end result.

I will share the picture as soon as I can! Stay tuned!

Saturday, October 9, 2010

Wall of Encouragement

I decided to convert a spare bedroom into a craft room that doubles as a spare bedroom. I love to do crafts, mostly scrapbooking but I will pretty much make whatever my little mechanical heart desires. Since I've been sick I've found my "inner crafter".

I made the room a beautiful peony colour and created a focus wall. Check it out.

I call it my Wall of Encouragement.

Sunday, October 3, 2010

Mistress of the Pole

I'm sure many of you will find amusement in this post.

I have started taking some dance/aerobics classes. Two per week actually. One class I take is yoga. It's great for relaxation, stretching and flexibility. I do not perform any moves that require me to be completely upside-down. I have been cautioned against being in a downward facing position for an extended period of time. The blood rushes into my heart and may cause it additional difficulty to pump. I always secure my backpack by the waste band nice and tight so it doesn't hit me in the head when I go into down-dog. And when I lay on my back I just put my backpack flat on the floor beside me. Since I have the LVAD, I am not supposed to lay on my stomach. Luckily there aren't many moves on the stomach. It is very clear that some people wonder why this girl exercises with a backpack but I think I do pretty good.

The other class I take is the more, let's say, exotic-type class. Once a week I take pole dancing lessons. You read that right. Ok. Laugh a little. And laugh a little more.

I will tell you that it is very sexy with a backpack. Ha! Obviously I do it for the exercise benefit. Let me tell you, it is a real workout! I chose pole dancing because there aren't any moves on my stomach and there isn't any jumping. Those particular restrictions really limit the aerobics and dance classes I can be involved in. A friend of mine said she was going to try pole dancing and I said, why not just go and see what it's like. I had so much fun! After three weeks, I'm not too bad. I have figured out how to do some moves and lower myself at a good speed. The first week was rough on my muscles and I was sore for about 5 days. The only other problem is the bruising on my knees. Most spins require the dancer to land on their knees. I was purple and blue for a while. I decided to cover my knees with gauze and tape to reduce at least some of the bruising. It's another class that people wonder why I wear my backpack. They would never guess that I have the artificial heart in there and I'm waiting for a heart transplant. I really enjoy the classes and look forward to improving!

I understand that these classes can be a risk. I have discussed certain limitations and concerns with my kinesiologist. I am aware that if any symptom was to arise to just stop and relax. I take care not to get my drive line caught on anything. I'm not going to wait to live anymore. The LVAD has made me feel significantly better that I want to get to the things I've always wanted to do. It's uplifting. I'm having a great time!

Covergirl AND Centerfold

Check out the article in the annual report for St. Mary's General Hospital in Kitchener. I'm on the cover and we land right in the centerfold! It's only right.... Haha!

I'm really happy with the story and I'm so glad I have had another opportunity to share my appreciation for the staff at St. Mary's Hospital.


Shannon, my Sis-in-Law decided to get a new tattoo. I asked her if it was alright to share a pic. I'm sure you all will really like the design.

She is a very passionate person and in a literal sense, wears her heart on her sleeve (or collarbone in this case). I was very touched by the design she chose. It offers encouragement and hope.

Shannon has been such a big supporter of all of my adventures. She, in fact, started this blog for me. Her compassion and understanding has changed our relationship. Shannon's son, Ashton, is a bright and amazing little man with many challenges. Between Shannon's perseverance and Ashton's smiling face they have overcome more challenges than any family should have to endure. I admire their strength. In the past, it was difficult for me to relate to her difficulties. With my heart disease I have been able to connect in a new way. My illness certainly has brought some great things and I'm thankful for that.

I absolutely love the tattoo and I'm so glad that she has chosen to share her passion with the world.

Friday, October 1, 2010

St. Mary's Rehabilitation Centre Open House

The St. Mary's Cardiac Rehabilitation Centre was recently expanded and renovated. To promote the changes to the centre, the staff hosted an open house today. Past program participants were invited as well as hospital staff.
I was personally asked if I wanted to include a booth at the open house to promote my organ and tissue donation apparel. I was very excited for this opportunity to not only include my products, but to encourage more people to register to be a donor. After all, that's the goal of the apparel I have designed anyway.
So I got busy making plans and gathering pamphlets and giveaways. Trillium supported the booth and provided information to share with people and register donors.
I also included my good friend, and pump=pal, Pam. She is the other person in Cambridge supported by an LVAD. She has also been attending rehabilitation classes at the centre. Pam was a great addition to the booth and added some additional enthusiasm to registering for organ and tissue donation. Thanks Pam!
There was some media present to help promote the Open House and Pam and I were included in the CTV segment (watch here) and the report in Waterloo Record (read here). The CTV segment was brief but hit the point of promoting the importance of the rehab centre. The Record story had a little more detail and included a little more personal perspective from Pam and me. I was very happy with both reports.

All of the staff involved in the open house:

The Pump-Pal workin' the booth: