ROUND TWO (There is an update! scroll down!)

Hey there!

For those of you who want to know how I am doing, this is where I will be posting updates. If you are reading this, it is because a Campbell Family Member, Neil or I have given you access to it. I would ask that you respect my family’s privacy by keeping this information to yourself. Please do not share any of the contents I post here (photos, login info, etc) with anyone else.

Ok so where to start. As you know, I had a double lung transplant in April of 2012, and since then I have been able to accomplish so many things. I’ve knocked some remarkable items off my bucket list. I went back to school, I lived by myself, and stood by my sister on her wedding day. I did the CN tower edge-walk, took the train across Canada and went camping. I met and got engaged to Neil Young, the love of my life. I’ve traveled to Holland, Georgia, through the east coast. I have participated in a couple important documentaries about organ donation. I spoke publicly to thousands of people about organ and tissue donation. I even got a street named after me! Most importantly, I have enjoyed just hanging out and taking advantage of  the amazing gift I have been given - time.

However, I have been in chronic rejection since May 2016 and have been listed for another double lung transplant. Picture me making a funny reference to being called a 'double double' when all this is over. Believe it or not, re-transplantation is a known possibility when it comes to lung transplants. If you'd like, you can refer to my list of FAQ's below. But first, here is a history of my health status for 2017 so I can bring you up to speed with what's been going on. (Updated regularly now that Hélène has had the transplant)

HEALTH STATUS (Updates below)

SEPT 2017 (Neil will be updating for now)

  • Wed Sept 20 - Just a general update now, sorry for the delay/gap. Hélène is in great health and even greater spirits. She still has an IV central line in but is not on a constant drip. The new lungs are getting stronger and stronger every day. She's still walking daily but requiring oxygen on and off. Not to worry, this is a normal part of lung recovery. As she conditions the new lungs, they'll do the exchange better. She's been outside regularly and a few people have even come from Ottawa. To put all this into perspective; in 2012 when Hélène had her first transplant, she was in ICU for two weeks, step-down for one, regular ward for one and then readmitted after she was sent home for another two weeks. We are looking forward to rejoining the physio gang in the Lung Rehab room soon!
  • Sun Sept 17 @ 17h00 - Dinner was delivered from Swiss Chalet from a friend back in Ottawa. Thanks, Dave!
  • Sept 17 @ 14h00 - Hélène walked sans aide from her hospital room down to the gathering room on the 4th floor. Mary, Liza, Alan, Manon, Neil, Kevin, Jenn & Gracie had a late lunch with her and she did great. She also got all of her med lines removed. She is now tube and line free!
  • Sat Sept 16 @ 14h30 - Hélène got the remaining two chest tubes out this afternoon! This is a huge step towards going home. We took another walk around the ward and all is well. Pain is minimal, fatigue level is well managed, her intake of food and fluids is back near normal. 8 days post surgery and she is well on her way to resuming a somewhat normal life!
  • Friday Sept 15 @ 11h45 - She went for a walk with her physiotherapist today. She didn't use her upright supports but a walker under her own body weight. She walked around 120+ metres without stopping. This is all a positive step towards walking out of the hospital for good! Her meds were adjusted so that she doesn't spend her day as groggy-Hélène.
  • Thurs Sept 14 - Nothing much to report today. A lot of the same. She's still doing great!
  • Wed Sept 13 @ 17h00 - Hélène was moved down to the regular ward. She's a regular inpatient now! She is still in isolation but she's doing much better. Still she gets tired quickly but that's the recovery process.
  • Sept 13 @ 10h00 - Hélène went for another walk this morning. She's making great progress and might be moving out of stepdown this afternoon.
  • Tue Sept 12 @ 14h00 - Hélène had four chest tubes after surgery. Two of her lung drainage chest tubes were removed today! A huge step in the right direction. She spent the afternoon and night mostly sleeping and relaxing but she's feeling a lot better and the pain is slowly starting to fade. Manon and Alan went later in the night and Hélène got her nightly foot-rub.
  • Sept 12 @ 12h45 - Hélène went for a daily walk around the ward. She's doing great!
  • Mon Sept 11 @ approx 18h00 - Hélène was transferred to the stepdown unit! As the name suggests, the stepdown unit is a level of care that is below ICU. This is a big deal in the transplant process. You are healthy enough to go from one nurse for every patient to one nurse for every two patients. She isn't out of the woods yet but she's getting there. The Dr on staff rounds today said that Hélène was doing fabulously and everything number-wise was where it should be.
  • Sept 11 @ 10h30 - She went for another walk around the ward. Wonderwoman!
  • Sept 11 @ 10h00 - Hélène had her feeding tube taken out, a rather large IV near her left clavicle was removed and she was given permission for water and ice chips. Her swallowing ability was slow at first but by the end of the day, she was able to swallow her meds as she normally does.
  • Sun Sept 10th @ 16h44 - Hélène was visited by the physiotherapist. He asked if she wanted to go for a walk and her eyes lit right up. Hélène went for a walk around the ward and she was a speed demon, all things considered. Manon, Alan, and Neil were all very proud. Today was a good day!
  • Sept 10th @ 15h30 - Hélène's nurse called Manon and said that her breathing tube was out! She was still getting some oxygen but being weaned off throughout the afternoon. By 18h00 she was down from 4L to 2L.
  • Sept 10th @ 11h00 - Noreen and Steve stopped by the hospital before they headed back to Ottawa. Hélène wished Noreen a Happy Birthday and they spent a little time together before they hit the road. The nurse said that Hélène should have her breathing tube out by the afternoon.
  • Sat Sept 9th @ 19h00 - Hélène is now fully awake and aware of her surroundings. She's comfortable but drowsy. She's coherent enough and able to communicate with pen and paper. She saw Manon, Neil, Alan, Noreen and Steve. Her surgeon stopped by and said she was making great progress, and that the lungs were a perfect fit. We left her side around 21h30 for the night.
  • Sept 9th @ 10h00 - Manon and Neil showed up to see Hélène. As she was coming out of sedation, there was a fair bit of confusion, agitation and anxiety. As the meds wore off throughout the day, she became more clear. Hélène had some visitors stop by around noon; Mary, Eli, Elizabeth, Alan, Noreen and Steve.
  • Fri Sept 8th @ 18h00 - Hélène was moved to the MSICU at TGH. The typical intake procedure done by the nurses took place and they did their head-to-toe assessment of Hélène. They set her up on strict monitoring and are still keeping her sedated for a minimum 24 hours post-surgery. She was allowed visitors (family only) 2 at a time for brief periods. As she is on contact precautions while in hospital, a full gown, gloves, and a face mask are required at all times. Will update more as info becomes available.
  • Sept 8th @ 16h00 - Just got word from the surgeon: Surgery went well. New lungs are already working on their own. Just shy of 12 hours in total. The surgery team is currently tying up loose ends and closing up the incisions. She'll remain sedated for at least 24 hours to avoid bleeding. There's a slim chance (10-15%) they'll have to go back in to close up some internal bleeding but all in all, it was a huge success!
  • Thurs Sept 7th around supper time she got the call to come in for her second transplant. Both Neil and Alan left Ottawa around 19h30 and arrived in Toronto around midnight. September 8th at 05h30 she was wheeled in for surgery! 
  • On September 1st, she was placed at a higher priority for a lung transplant; Priority 3.

AUG 2017

  • My lung function dropped at a steady but slow pace. Co2 retention was still an issue. Physio was getting harder and I was sleeping more.

JUL 2017

  • I was readmitted due to increased Co2 retention. The next step was to move from CPAP to BIPAP. The BIPAP is a more efficient way to get rid of the Co2.
  • The physiotherapists have observed that during my physio, my oxygen levels drop more frequently and severely. They will be monitoring my oxygen levels more closely.

JUN 2017

  • I was maintaining my physio and kept on gaining strength. All issues around my appetite were resolved. No real changes this month.

MAY 2017

  • Friday May 5th: With my health and lungs declining rapidly, I was listed for a second double lung transplant. For me, it meant relocating to Toronto and starting physio.
  • My strength came back, and so did my appetite. By then, the odd Popsicle and Reese Bar were not enough to fill my new found desire for food.

APR 2017

  • I had my 5 year assessment in Toronto and started the work up for a second transplant. I was admitted with persisting nausea and vomiting. Shortly after, I was treated for a fungus in my digestive system. Eureka! No more nausea! I had my first craving for food; a smoked meat sandwich and pickle.

JAN - MAR  2017

  • Certain activities made me feel a little more short of breath than usual. I was in and out of The Ottawa Hospital with unexplained nausea and vomiting which resulted in many visits from uncle Bruce and Max the medic therapy dog. (Thanks Tracy!)
  • I had a very little appetite. The odd Popsicle and blizzard here and there weren't enough... Near the end of March, I experienced a sudden change in my ability to breathe on exertion. I needed oxygen again. This brought up the discussion about needing another transplant.
  • A typical lung takes in fresh O2 and exchanges it for CO2. Not only did I need oxygen, my lungs started retaining CO2. #BadLungs. An attempted remedy was a CPAP machine to remove the CO2. It worked!

MAY - DEC 2016

  • A small decline in my lung function was noticed at my annual assessment in Toronto. I slowly felt short of breath more and more, my health team was aware but they were not concerned.

Here are some FAQ’s

How do you feel about needing another transplant?

You know, five years ago I swore I would never go through this process again. Some of my experience in ICU post-surgery felt traumatic. Similar to a mother's childbirth experience, the outcome outweighs the pain and suffering; they remain a distant memory. I have knowledge and know what to expect. I am ready to take it on! Sometimes, life throws stuff at you, and you just have to keep swimming.

Is the process the same?

Yes, the process is very similar.

When is your transplant surgery date? How long will you wait? What is that waitlist like?

Like my first surgery, there are no set dates. I am placed on a waitlist. I could be waiting anywhere from six months to two years. Many factors determine eligibility for a transplant. Picture an excel spreadsheet with all these different categories, blood type, chest cavity size, antibodies, health status, etc. Finding the perfect match might take a while. 

Where will you be waiting?

I will be waiting in Toronto, same place I waited in 2012.

Priority scale?

The priority scale is out of four(4). 1 being the lowest and 4 being the highest . 4 is rare.

What will you do with your time?

One of the requirements to remain listed is doing physio three times a week. That will keep me in tip top shape and ready when I get the call from the transplant team. I also will be exploring this city so if you've got any suggestions, let me know! iHalo Krunch has got some great charcoal ice cream (in case you're wondering).

What gets you through it?

Honestly, it takes three things to get through this. Faith, Family and Ferocity. I like to think I am pretty fierce haha (In a positive way!) I could not do this without the relentless support of my fiancé, Neil, my Family and Friends. I am so grateful to them. I can't tell you how lucky I am to have all the support to me. Also, music. Music helps a bunch so please feel free to share your tunes with me.

Love you bunches,

Hélène

Manon Mary.png

Unexpected Error

I just wrote a blogpost (my first one in like 3 years) it was all beautifully written and cute and poetic, and you know what happened? I lost it all.  

my app shut down. I got so frustrated. In fact I'm still feeling a little frustimagatesdss (I can't even type) - but I shouldn't be. You know, my main message has always been "react positively when unexpected things happen", so I'm trying to apply that to my technology glitch - mishap moment. 

I want you all to know that I am doing so so well! I have had my fare share of ups and downs since receiving my double lung transplant, but aren't I the luckiest Hélène Sage Campbell ever. 

So many incredible things have happened in these past few years, of course I can't write all of them out (you and I would be here for days) But in summary: 

  • Mary (my older sister) got married  
  • I moved out (I live alone and it's fun)
  • My parents got a kitten (I love her! Her name is "mittaines" she is fluffy and cute and I wish she was all mine - Of course I'm a little upset that they got a pet now that I don't live at home anymore but whatever) 
  • I'm dating this rock solid awesome guy, with a heart of gold. (Sorry, I had to, his name is Neil Young)
  • I'm trying to talk about organ donation as much as I can
  • Ellen makes me cry (I love her show) 
  • Justin Bieber's music still has me shaking my nonexistent booty! Is it too late now to say Sorry!?
  • So many great tv shows = thank you Netflix
  • I have consumed Reese's (more then any human should) 
  • Friends, Family, You know who you are, you know what this extra time has meant to me, and I never want to stop telling you how much I love you. 

 

So many incredible other things have happened, but I just want you all to know that Organ Donation works. I am breathing, loving and living because of it, and I am forever grateful to all of you who supported me! (Also, OTTAWA IS THE BEST CITY!) *opinions are my own but I am always right (haha jokes!)

Thank you feels so inadequate when it comes to addressing my donor family for the amazing gift they have given me. What an incredible gift I have received, Life.   

I love you all lung lung time!

 

 me, being all rebellious sitting on a roof... Thanks Bruce for this photo

me, being all rebellious sitting on a roof... Thanks Bruce for this photo

Remember, beAdonor.ca 

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