Looking back and looking forward

Hey Hey Hey!

I know I have been extremely quiet when it comes to updating you all with what has been going in the past year. To say that things have not been stressful and overwhelming would be lying. When it came to appearing in person on The Ellen DeGeneres Show, I was a sack of nerves. I felt like Mrs. Bennet from Pride and Prejudice "Oh My Nerves!".

I don’t remember it happening. Ha-ha. I just want everyone to know that working with The Ellen Show was an experience of a life time. The Ellen DeGeneres Show is a big team and they are all so pleasant to work with. Ellen, luv you lung time sista! Thanks for the dance! The amount of worldwide support has been larger than life - (think of the Backstreet Boys).

My transplant is going well, and I am feeling great now, but I have had some bumps along the way. I have had a tough time balancing things in life, from advocating for organ and tissue donation to taking care of myself and medically being wise. I am bad at saying no to things. I struggle with FOMO! Fear Of Missin' Out! Now that I am feeling great, I just want to do everything that comes up! But, due to my immunosupression, I have to be very careful with the amount of things I commit to doing.

One thing I don't think I ever will stop doing is thanking all of you. To you, who have supported me and have followed my story. I appreciate all the love and endless kind messages. I am human, I have my ups and downs and there are moments when I really have felt discouraged. I have had all of you supporting me and keeping my head up when all I really wanted to do was keep it down. Without your endless positivity and consistent loving feedback, I would not be where I am today. I say this genuinely and mean every word of it. With these struggles, I am not alone, was not alone and will never be alone. We all go through different things, and it's always great to know that there is support.

During my journey, I lost friends who were experiencing the same things as me. Unfortunately, their precious gifts did not arrive soon enough. But, they never took off their boxing gloves, they were in the ring until the end.

This is the reality of transplant. Transplant is not a cure, but a treatment. Do not get me wrong, it is an incredible and magical gift! But it should never be taken for granted and should never be forgotten. It is so easy to get back into the thrill of life, to feel normal again. To forget others who are now waiting and, in their situation, are feeling the same way I did a year ago. For myself, the daily pills are a good reminder of the delicacy our new lives come with. The daily temperature readings and spirometer (breathing) tests are as well.  (Jessica Carver wrote this so elegantly in her blog)

I am so grateful for life and honestly, I am PUMPED about living it! I am moving on to support the Give2Live Campaign. Check it out at Give2Live.ca for more information. It was created to help transplant patients and their families as they wait for the life saving gift, a life changing organ.

I would like to introduce a very important person when it comes to the awareness of my story. My webmaster, Taber. He has been an absolute GEM and has gone above and beyond in so many ways. He created alungstory.ca and maintained it all as a volunteer. There are so many things that went on behind the scenes and he is one of the many but a VERY important one. I see it fitting he concludes this blog post with an explanation of where things are going, and where the motivation for A Lung Story came from.

Taber!

Hello everyone, my name is Taber Bucknell and I am the website administrator of alungstory.ca.

Alungstory.ca is about to transition to supporting Hélène in her key role with Toronto General Hospital’s Give2Live.ca campaign. I’ll cover the changes you will see on alungstory.ca at the end of this blog entry.

Before that, I thought you may be interested in how alungstory.ca started …

In May, 2011 an anonymous donor gave $10,000 to the Pastor of Community Bible Church – Stittsville (at the west end of Ottawa, Ontario, Canada) where my family attends. There was a condition on the $10,000 gift; to "pay-it-forward" in the community. On Sunday, May 29th, 2011 Pastor Steve Stewart gave at least one $100 bill to each family in the congregation in attendance that day, along with the assignment to "do something good". All one hundred $100 bills were distributed.  As a result, over the next few months there were fundraising garage sales, bake sales, and other events. Each event was facilitated by the $100 bill in seed money. (By the way, the total raised by the various events over tripled the initial $10,000 and was spread over multiple community and charitable causes.) I wanted to try an online assistance project with my $100.

On the Monday after I received the $100 bill from Pastor Steve, two of my coworkers at Canadian Coast Guard donated an additional $180 even before my online “pay-it-forward” project was picked!

A need for an online initiative became clear in July, 2011. Hélène Campbell the bright, talented, creative 20-year-old second daughter of family friends had increasing difficulty breathing. Any physical activity was very draining for Hélène; something was very wrong with her health. As you know, Hélène was eventually diagnosed with Idiopathic Pulmonary Fibrosis. Her only option was a double lung transplant at Toronto General Hospital (TGH). In January 2012, Hélène had to move to downtown Toronto to be close to TGH while waiting for donor lungs to become available. Her mother Manon took an unpaid leave from her job to accompany Hélène. Her father Alan and three siblings stayed in Ottawa. The province covered Hélène’s medical expenses but not Manon and Hélène’s living expenses in Toronto. I wanted to try raising some funds online to help them with those expenses.

In early November of 2011 the $280 total seed money I had set up http://alungstory.ca. The site hosting provider for alungstory.ca is Squarespace.com, and they have provided outstanding customer service! I found Squarespace through "This Week in Tech" (TWiT.tv), a technology podcast network I listen to.

At alungstory.ca’s launch Hélène’s story was summarized on the front page. There was a blog where Hélène and her mom could go into more detail about the medical and life effects of needing, and eventually receiving, a double lung transplant. A PayPal button enabled site visitors to donate funds to assist Hélène and Manon with living expenses in Toronto. There were a few links to organ donation registration sites, especially beadonor.ca. Alungstory.ca included Hélène’s (@alungstory) Twitter feed and Flickr (photo) feeds. There was also a French version of both the front page and the blog.

Alungstory.ca also enabled the Campbell family to easily update family and friends about Hélène’s condition.

The moment alungstory.ca launched, at 11:18 PM on November 25th, 2011 the Facebook "like" button count on the front page immediately started to climb. In 24 hours the "like" count was approaching 100 as friends and extended family rallied around Hélène through the website.

At Hélène’s initiative in January, 2012 the mission of alungstory.ca dramatically expanded from assisting the Campbell family with relocation expenses, to also focusing on the cause of organ donation registration. The support for organ donor registration received from Justin Bieber, Ellen DeGeneres, the media, and you(!) is reflected in over half a million page views of alungstory.ca, from 167 different countries, as of April 18th, 2013.

The volunteer team behind alungstory.ca grew to include gifted videographers, French translators, people helping me with contacts received through the website, and others. I thank the alungstory.ca team so very much for their help!

Alungstory.ca will soon start to pivot to better align with Hélène’s support of both organ donation registration and for families affected by the need for an organ transplant. Hélène will be blogging at Give2Live.ca using Tumblr, therefore this blog will go quiet while she does so. You will see redirect links from pages on alungstory.ca to Give2Live.ca pages where appropriate. Some alungstory.ca content and formatting will change. Alungstory.ca will continue to preserve the record of Hélène’s remarkable journey to breathing with new lungs. For instance, the timeline page at alungstory.ca will remain in place as part of that record.

Thank you to everyone who has visited and continues to visit alungstory.ca. A huge thank you to those who donated funds to help Hélène and her mom with their relocation expenses in Toronto!

The tag line at the top of alungstory.ca is currently "Help Hélène breathe - A journey". Thanks to the incredible kindness of a person who registered as a donor, and the donor’s family, Hélène can breathe again and her journey continues.

Taber Bucknell
Website administrator at alungstory.ca