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Ms. Hélène Campbell
c/o L'Agence Mensour Agency Ltd.
41 ch. Springfield Rd.
Ottawa, Ontario K1M 1C8
Canada

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"A Lung Story" Blog

Sunday
Apr212013

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

Saturday
Apr062013

It feels like yesterday

My name is Hélène and I was listed for a double lung transplant at Toronto General Hospital on January 21, 2012, and RECEIVED my gift of life on April 6th, 2012. Hard to believe that was a year ago!

Wow, time flies! and a whole lotta things have happened this year!!

These new lungs have given me a second chance to live and laugh with the ones I love. That includes you! People wonder how I manage to stay positive through these tough times, well, I believe there is  always a silver lining in every cloud and I have a lot of hope. I love life and am so thankful for what I have! :) the hope of everyone around me, and the endless blessings played a HUGE part in my journey for new "blowers" as my friend Jess would say. :)

People who know me well understand that I usually find the humour in things, and particularly in my health care.

I want to take this time to show some love and support and let you all know how grateful I am of all your endless LOVE! The support I’ve received has been overwhelming!

I think everyone should wear green for today (or whats left of today) because green is the color for organ donation! Tweet a pic of yourself in green with the hashtag #BeADonor and lets see how many greenies we can get!!! Wearing green is always a good thing, don't worry, your eyes will pop.

I wish to apologize for the lack of updates, but just take it as a sign that I have been busy busy and doing some great things that I was unable to do before; like jog!

I want to Thank everyone who’s contributed in some way towards my journey for new lungs and how you have continually followed up!! I am so ecstatic about life and I am loving the fact that I can dance the night away!

When you see me walking down the street, feel free to stop me and have a quick dance! The best thing we can do is spread love and hope to those around us. Organ Donation saves lives and I, along with THOUSANDS of others, have benefited of this gift of life.

If you aren't yet a donor, consider it ;) you can do it, register at beAdonor.ca and you can save lives like mine!

I would also like to take this time to thank my donor and their family. I know someone is morning the loss of a loved one, but know that I have breathed easier because you made such a selfless decision. I was able to witness my friend's wedding, dance on The Ellen DeGeneres Show, spend Christmas with family. and watch my friends receive their precious gifts of life.

I am still so sad about my friends who passed away waiting to receive their gift. I will continue to remember them.

Keep an eye out for the launch of the Give2Live Campaign challenges coming your way!

I will always love you LUNG Time!

Thank you, for such  hope, love and life (and for allllll the Reese's AND BOOSTER JUICE!!)
xo

Hélène


It's what's inside that counts. Be an Organ Donor & Give Blood.

Tuesday
Oct232012

Oh happy day

Oh happy day …

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

Monday
Oct152012

My Summer Vay-Cay!

Hola mi amigos,

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

Wednesday
Jun202012

Happy Humid Heat wave, homies

Yesterday, while George Marcello was in Emergency with a setback on his post transplant journey, his Torch of Life Relay came to a finish at Queen’s Park. I was concerned really about him, but knew he wanted the message he cares about to get out through the event. I had the privilege to carry the Torch of Life from the Toronto General Hospital to Queen’s Park with Khaled Khatib and Olivia Hubert. I gave it to a construction worker on the way, we even had one doing the dance while we walked by. We passed the torch to one of my great friends Nancy Salvalaggio, who is waiting for a double lung and liver transplant. I met her in the treadmill room.

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