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

To all of you that continue to send us positive thoughts, words of encouragement and prayers, thank you!

Yes, the past few weeks have been challenging for Hélène and our family. It may still take some time before her level of energy fully returns and her kidneys regain their function. But, we were so encouraged to find out that her kidney troubles are not related to her anti-rejection medication (Tacrolimus).

The initial kidney biopsy report indicates that Hélène has Acute Interstitial Nephritis. In other words, her kidneys are inflamed. Two of Hélène’s medications are known to potentially cause this type of reaction. We also know that once those medications are stopped, her kidneys will most likely regain their normal function. So as you can imagine, we are very happy to hear this good news!

We have shared before, how the life of a transplant patient is not always smooth sailing. Yes, it can be quite bumpy, especially in the first year.  Adjustments to life style and medication treatments are frequently needed. And, every person’s body responds differently. To this reality, we have been well prepared. We are very thankful for all the excellent health care professionals that we’ve encountered.  Merci!

From the outpouring of tweets and Facebook messages, we can see that many of you are in for the ride with us. This kind of support is of great value and we are so appreciative. Hélène has repeatedly said that it lifts her up.  She is so thankful for people’s kindness (and so are we, her family). 

While experiencing these bumps and challenges, Hélène brings us back to reality with her words: “Hey, I’m alive!, I’m breathing without oxygen!, I have a second chance and I owe it to my donor and the donor family!”

As some of you may know, she has named her new lungs “Grrratitude: Attitude with a little Grrr”. They are a true gift and, seeing how Hélène daily lives by that principle of grrr…attitude humbly reminds us of the real values of life.

Manon

Let me start this post off with a ‘lil’ welcome back ;).  I have not blogged since June 20th. Now thats what I like to call a dry spell...

My ‘Dance card’ has been pretty full lately, but that does not mean I won’t be dancing with Ellen DeGeneres... They still plan on having me shaking and groovin, its just a matter of health. I want to dance at my BEST. Ya know?

Remember those essays you had to do when you got back to school after summer vacation? well, here’s mine ... 

What I did over summer 2012 - by Hélène Campbell

My summer really started over the weekend of July 14th. That is when I got permission from my doctors at Toronto General Hospital to go home!! Not just to my temporary home in Toronto, but to home home, in Ottawa! Good Ole’ Alfie’s Stompin Grounds!! There I was, let free, to be at mi casa at Lasta :)

Momma Lion (otherwise known as my mother, Manon) and I packed up our things in Toronto. I am sad to say I left some things behind, but like Arnold Schwarzenegger once said, ‘I will Be Back”. I took my Reeses Peanut Butter cups home though.

I was looking forward to going back to Ottawa, but as happy as I was to get back home, there was some sadness. My memory of details there had sharpened, things like the interior of our temporary Toronto home. But more importantly, of the remarkable people I met. So many very kind strangers who treated my mom and I so well; neighbors, storekeepers, burger restaurant employees (you know who you are ;) ), deli employees, taxi drivers, physiotherapists, nurses, doctors and everyday people on the street who recognized us. On Monday, July 16, as were leaving, literally “a man on the street” said “hey, aren't you the girl with the lung transplant?”. When I said “yes” he wished me good luck and said that my story gave him a reason to quit smoking. That was neat.It was going to be so different this time, and I knew it. I could go to my room without wheezing! My breath was still taken away as I opened the door to my bedroom. I found out you can cram quite the amount of people in my room.

July 18th My family attended a news conference at the Government Conference Center in downtown Ottawa. My mother and I received such a warm welcome! I was super honoured that the Minister of Health, Leona Aglukkaq, attended and announced $10 Million in government funding for Transplant research in Canada. Thats So Exciting! Thank you to all who supported and helped out with this! (Ottawa … I love you!)!!

Then, I kind of dropped out of sight. I tweeted about putting out the garbage, then I didn’t tweet for about three weeks...  One of my followers asked me if the garbage man took me with him... hahah! 

I had an intense schedule before I left Toronto. Medically, there were tests and then my usually physiotherapy. With the organ donation awareness side I had been quite active, attending a number of events. When we came back to O-Town, I began my recovery. I needed to rest (and so did my mom!).

My family has a trailer we go to. I spent a lot of time up there in July and August. I was even there last week. Chilly, but I loved the colors. Being up there is awesome and is a huge part of my second chance at life. I can swim, hike, canoe, etc! I can do them all now in moderation. Sometimes, I could be very quiet, do some reflecting, and concentrate on resting. A big change is that I can sit near a campfire now - a definite no no when you are on oxygen...

Of course being back with my family has been WONDERFUL!! I missed them so much. They are all so strong. We are a family of six, I have two sisters and a brother plus my mom and dad.  It is so nice to just be together, even if we don’t say anything. I can say the same thing when it comes to being with my friends here in Ottawa. I missed people so much.

I really enjoy just walking, which was very tough stuff before my transplant! My sisters and I go for walks and it means so much. I also volunteer to take the neighbor’s dog for a walk. I’ve only done it once though so I’ll have to pick that up!

So what about my recovery? I am recovering from the double lung transplant fairly well. All transplant recipients expect some issues. There can be issues of organ rejection or infection, and there can be issues with the anti-rejection medications (I am down to about 30 pills a day!). In my case there is a problem with my hemoglobin; the red blood cells that carry oxygen around the body.  My new lungs are doing their job of making the oxygen, but my blood isn’t doing a good job of carrying that oxygen. They think it is due to the kidneys, I am not worried because my doctors are working on it. If you see me in person I look pale sometimes and I get tired easily. So, I have to be careful to rest enough and, interestingly, drink enough water and juice (yum). Having spiffy water bottles is my new thing...

Transplant recipients have to maintain body strength through physiotherapy, it is part of the recovery process. I love to go to the gym at 10am...that way I can watch The Ellen DeGeneres Show while working out.. Pumpin That Iron boy! Arm wrestles anyone?

I wear my Reeses T-shirt. It creates an image of a laughing orange blob on a treadmill. ;) Its pretty awesome.

I got to do a lot this summer, went to some weddings, swam (another “could not do” before transplant), and broke the sound barrier with my friend Felix Baumgartner... well, not the last one … but you never know. ;)

As the summer wound down I started getting busier again. I’ve been doing some speaking at about organ donation awareness at a few events. I really enjoy doing it.

I am also writing a book about the last year; because let's be honest, it's a bit of ‘alungstory’. Writing a book is a whole new experience for me and it has its challenges. I’ll promise to do my best to deliver a story that will express grrrrattitude (attitude with a little “grrrr”).

As I have said before and will say again … I don't want to stop my campaign to raise organ donation registration awareness. I not only want to help people on the organ transplant waiting list but also to honour the gift of a second chance I received from my donor. In Ontario alone there are, right now, over 1500 people waiting for a second chance at life through an organ transplant. Every three days one person on the transplant waiting list dies. I am sad to say a very dear friend of mine, who was on the transplant list, passed away in July; she was 20-years-old. I am dedicating this post in her memory. She, along with many others, fought an amazing fight and kept hope until the end. 

Love You Lung Time

Hélène

In Memory Of L.M.

Ma chère amie, je t’aime de tout mon coeur. 

1991-2012

My groovy friends and family from Ottawa surprised me with their smiling faces and amazing banners in front of the TGH. They were here, in Toronto, ready to walk by our side and promote the importance of being a donor. We hung out in air conditioned comfort for the afternoon. It made me realize how much I miss my core group of friends  – I’m looking forward to walking the bicycle friendly streets of Ottawa again with friends and family.

These guys made my month!! (And it has been a bigger month than usual – from Justin Beiber, MMVA’s, to the Diamond Jubilee Gala…) Another highlight was the chance I had to spend time with Taber, my glorious webmaster and de facto manager, alung with his delightful family. We kept them up late and threw off every routine their family has. 

MPPs Lisa McLeod, France Gélinas and Health Minister Deb Mathews gave great speeches in front of QP and survived the blast furnace heat. We retreated inside where a press conference featured Khaled Khatib, Marsha Gladstone, a Rabi, a Marriott Inn manager Beth, and a Toronto police chaplain.

People have been inspired by my story and I in turn am being inspired by others’ stories.

So, I get asked, “How are you doing?”

I’m still not a transplant Jedi, but my “powers” are increasing. I can handle stairs, walkup long ramps, walk at a regular pace, eat 3 WHOLE slices of pizza…

I have not regained my love of coffee – hard to imagine, but true. But I’ll still grab a “coffee” with you sometime.

My recovery is now taking centre stage, as I’ve asked that there be no media interviews, etc. for the next few weeks. My Toronto Bucket List awaits.  And if anyone is concerned that it may contain crazy or dangerous exploits, don’t forget, Mama Lion Manon is still my 24/7 support person.

Our thoughts and prayers are with you George - get well soon. 

lylt

Hélène

I must admit, I am rusty when it comes to writing. Wow, I haven’t posted a blog since March 18^th.

You know the stage in life where you “look back at where you were a day/week/year ago”? Well, I am definitely going through it now. 

Thursday, April 5^th I didn’t think I would make it through the following weekend. April 6^th, Good Friday, I got new lungs and here I am writing about it today. What a miracle to think of where I was 10 weeks ago... In our home in Toronto with my mom, and marvelous as she is, so were the delicious Reese’s I was devouring. I had a supa hawt pair of plastic Nasal Prongs attached to a compressor I referred to as ‘Darth Vader’. Vader was providing me with Oxygen, keeping my saturations stable. (I always knew there was good in him). Things like breathing, walking, even talking were feeling harder daily. I don’t know about you guys, but I get goosebumps just thinking about the difference between then and now and how sick I was. I will always be greatful to that amazing family (there are many others like this one) who, in such time of grief, decided to act selflessly and donate their loved ones organs. Because of them I am alive, dancing with my family and enjoying life with all of you today.

These days, Mumma Campbell and I have been keeping busy.

I am taking my pills daily. I have been Pumping Iron alung side at least 90 individuals who have either received lungs or are still waiting for their pagers to go off. These spectacular, strong, individuals make their way to the Treadmill room 3 times a week. As a lung patient, in order to be on the wait list, we have to do physio and it is cruicial after transplant. One of the Physio therapist likes to 'up' my workout for fun, so watch out, Ottawa (especially Barrhaven Dairy Queen, Riverside Dialysis and Cedarview Alliance). When I get home, I’ll have guns of steel. I have also been doing weekly bloodwork, chest x-rays, pulmonary function tests (to measure my lung function which has gone from 32 to 43 in 4 weeks!) and clinic appointments. They have all been going very well and the Transplant Team at the Toronto General is da best when it comes to informing us about the progress. 

Lately I have been watching Star Wars. As you know, my home oxygen was referred to as Darth Vader. Well, my oxygen provider took ALL my oxygen away just this week, (NO MORE OXY = BIG STEP) so I had to replace Darth with The Real Vader. I am going to use a quote from Star Wars that is the perfect example of progress after transplant. 

“Impressive... *deep breath in, deep breath out* Most impressive… *deep breath in, deep breath out* But you are not a Jedi yet!” - Darth Vader 

In the words of Vader (then tweaked into my own words), my recovery has been amazing. I have been feeling remarkable and can do so much more then I could, but I am not a 'transplant Jedi' yet. The process is not an Instant Snap back to life as soon as they ‘put’ the new lungs in. Nobody becomes a Jedi simply by visiting Yoda. You have to train, and get stronger and stronger and eventually, you have the ‘force’ and strength to do things and live life ‘like a Jedi’, or in my case a normal life. If you haven’t seen Star Wars, I apologize. My analogy wont make too much sense then. . What I am trying to say is, I need to keep up the physio and activity, because transplant recovery is slow and progress comes with time.

As eager as I am to go back home, I understand having to stay here for an extra few months. I miss my extended family and all my friends but boy do I ever have the best support there ever was. And Thank goodness for Skype!

 I want to let you know I have been so blessed by the endless love you all have shown our family, it has kept us going. I have been so fortunate and am so thankful to the Donor Family, as well as the medical team over at the Toronto General.

I am going to need a glass of milk now, Just ate a 'crunchy reese' yep. they exist! (Thanks Hersheys!)

LYLT, have a wonderful weekend (enjoy a reeses if you can...and watch starwars)

Hélène

ps Remember to register as an organ donor today at beadonor.ca and give blood, its whats inside that counts.

Video posted by the Toronto Star Newspaper - June 4, 2012.

 (This Flash video may not run on some mobile devices)

Click here for the accompanying article.

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Hélène’s pulmonary function has gone from 26% in October 2011 to 20% just two weeks ago.  Recent tests show that it is no longer just a question of lung capacity. Her lungs have also lost some of the ability to do the proper oxygen exchange. The team as communicated to us on various occasions that this means Hélène has very little reserve.

Progression of Pulmonary Fibrosis means that Hélène’s lungs are getting more scarred. This scarring causes the hardening of the lungs. This also means that her heart is working harder not only at getting enough oxygen to the rest of her body but also at pumping the blood through her hardened lungs, facing resistance. Over time, the heart’s effectiveness also starts to be affected by the persisting resistance. Hélène’s latest echocardiogram shows some early signs of the heart being affected by this.

Hélène’s focuses now have to be on maintaining her physical shape through her exercise routine established by her medical team and preserving her energy more than ever before in order to not increase the demands on her heart. This will help with her recovery process after the surgery. Let me tell you that she’s very diligently been working out her muscles to prepare for that Sprint (a good comparison made by a dear friend of ours). In fact, she does not hesitate to point them out (her well-developed muscles) when talking about her physiotherapy and its benefits.

It goes without saying that her positive attitude, her joie de vivre and her love for Reese have all remained. In fact, they may even be stronger than before. I’m sure that seeing so many enthusiastic supporters of the Organ and Tissue Donor awareness Campaign in Ottawa had something to do with this.

Way to go Ottawa! You did such a great job in supporting the Torch of Life relay last Friday.

We love and miss you!

H&M (Hélène & Manon)

"Oh no! I haven't been able to blog about the gifts from my co-workers yet!" Then I thought "Man, I was supposed to make cupcakes this afternoon with one of my breathless sisters this afternoon!" (My friend from the transplant program) and last but not least, I thought  "Ah! I won't be able to go to the Hunger Games Premiere!"

It would have been a very valid reason to miss out on those opportunities. But the reality of waiting is you never know when it will happen until it happens. Even leading up to the very last moment. The surgery had been planned for 7am and at 6:58, the Dr. said 'Sorry Hélène, the surgery has been cancelled.’ I had been warned that they could cancel and immediately I knew it wasn't my time yet, they weren't the perfect match.

I felt sad, but not for myself. I was grieving with the family who had just lost someone. A ton of people were supporting our family during the False Alarm. Mauler from the Hot 89.9 Radio Station got his followers in Ottawa and many more to send us encouraging tweets all day. The encouragement and the gorgeous sunny day was the perfect reciepe to not feel down. Thank You Mauler!

When I first got the call, I called home to let the rest of the family know. The phone rang and rang and I kept planning what I would say 'Guys! I got the call'… But after about 20 attempts, there was still no pick up. We eventually had to ask someone to go over and ring the doorbell. It turns out our phones back home kick in to 'Night Mode' so they're quiet between 11 pm and 5am. Things are getting smarter and smarter; maybe a little too smart. I suggested they plug the old rotary phone in. When those suckers ring, they are always heard.

A week before the ‘false alarm’ call happened, my co-workers sent me absolutely amazing heartwarming gifts, which brought me back to where I was a year ago. Where was I? I was working. Working as a Part Time Clerk with The Ottawa Hospital, in The Dialysis and Nephrology Unit at The Riverside Campus. (Love You With All My Kidney) I was working, or as some say 'blizzin', at the busiest Dairy Queen in Barrhaven. (Missin Blizzin and Dipping Cones) And I was occasionally volunteering at Cedarview Alliance Church. (Tante Lisette - I’m Alive)

A huge chunk of our family's ‘rock solid supporters’ come from these three places. I am honored to have met with such amazing people on such a regular basis. I’ve been surrounded by a love from such a powerful family, who have made me who I am today.

From the long lasting loving family over at Cedarview Alliance, to the amazing staff at Good Old Dairy Queen Barrhaven to my many magnificent second-mothers who have managed to support my crazy mannerisms over at The Ottawa Hospital. I have always felt so supported and loved. I always had a reason to keep smiling, laughing and loving, and why would I ever stop.

I guess what I am trying to say is that the people you see every day really do make a big difference in who you are and how you handle things down the road. They help shape you into who you become. And just because you see them all the time doesnt mean you shouldnt stop and take the time to let them know how they have impacted you. Maybe it sounds silly but I wish I had done it more often!

LYLT 

Hélène

ELLEN, DAVID AND I ARE SO EXITED FOR TOMORROW YOU HAVE NO IDEA!!!!(ITS THE HUNGER GAMES PREMIERE)