News + Organ & Tissue Donation = Awareness

Yesterday was a fantastical day.

I was extremely honoured to speak at a Legacy of Life event which honours donors and their families. It was very, very emotional. It also gave me an even deeper understanding of the other side of organ and tissue donation.

At one point Tara wrote this down and slid it over to me:

Those families are amazing. During such a horrible time, when they are swimming in grief, they were able to honour their loved ones' wishes of donation.

I've had the honour to speak to some family members and the consensus seems to be that knowing their loved ones left a legacy has really helped them.

My awesome friend Tara came with me. She was a great support and cried right along with me. She used to work at the tissue bank (which I wrote about in a previous post) and had been to this event in the past. This time was different, as she was a guest, and was able to experience it in a different way.

The event was sad, yet uplifting in it's own way.

Everyone there knows that their loved one is a hero.

I hope I conveyed that in my presentation.

I sat by a woman who lost her son. She had such a big heart.

She wanted to make something very clear to me. She said "you do not owe anybody anything."

Those words meant a lot.

I may not owe anybody anything, but I sure as hell am going to do anything and everything I can to honour my donor and keep our chunkers as healthy and happy as possible.

If that includes dancing like a fool, singing completely off tune and eating Doritos....than I will. Dedication.

I like to think my donor would be proud. That they were in the room yesterday. Keeping me (somewhat) calm and giving me strength to share my story with such an inspiring audience.

After the event, Tara and I were on another mission.

I was invited to CTV studios for an interview.

Aside from the fact that it was National Organ and Tissue Donation Awareness Week, NS is also making headlines due to our Minister of Health and Wellness opening up discussions re: presumed consent, therefore the news stations were reaching out to organ recipients, people waiting on transplant lists, etc. for their stories and opinions on the subject.

Tara and I were like little kids. We were so excited. It started the second we got to this door:

I was interviewed by Kayla Hounsell. She was really cool. Made me feel very comfortable. Also, she was wearing green and if you remember - green is the colour of organ donation, therefore she's cool.

This is her:

Although I can't watch it myself, it's right here http://atlantic.ctvnews.ca/video?clipId=352701

Not that this is at all important, but I really should have coloured my hair prior to being interviewed. Can you say holy grey????!!!

Actually, I prefer silver.

I'm really too young to be dealing with all this silver hair. I get ID'd at the liquor store....do they not see the grey? I mean, silver?? But hey, if everyone wants to think I'm 18, I'm game.

Anyway, here's Tara and I being cool:

And I will be your new 6PM anchor from now on:

This is my official pose

On a sad note, the boys went back to Africa today, but will be back in 4 weeks. It's very quiet in our house without them....well Brad kinda makes up for it with his singing and gibberish blah blah blah that goes on from the second his eyelids open to the second they close at night.

It's actually really awesome to be a part of this household. I love it here.

Miss you guys! 4 weeks will fly...summer will be fabuloso!

National Organ & Tissue Donation Awareness Week

Life has been crazy busy lately. Lots on the go. It's National Organ and Tissue Donation Awareness Week!

Go green!

Recycle life!! 

Last Friday the boys came home from Africa! They brought a couple lions and a few monkeys too. Just shoved them in their suitcases. Caused a bit of chaos on the plane though. 

Brad's parents have been here too. It's been a full and exciting house. 

It's hard to slip away and write cause there's always something fun going on and I hate to be away from them. 

We got the chance to take Jagger & the G-man to a fenced in ball field. Jagger ran his guts out. 

Yup, they fell out on the field. 

He was so happy. It was the perfect example of a dog's life. Know what I mean? Not a care in the world. Feeling like a king. Drooling all over the place. 

Best part is - no one could complain that they were off leash. Take THAT animal control! 

I can't even remember the entire week. It was one thing after another. Go go go. 

Wednesday night was the second training session with the Organ Grinders. We ran up stairs all the way around an ice rink. 

Maybe go back and read that again. 

RAN up stairs.  

Booooooyaaah. 

It was during that workout that I really felt proud of myself. I can't believe what I'm doing! I never dreamed I'd be doing stuff like this! For some reason the crusty lungs and oxygen tubing got in the way. 

Although, really I shouldn't be surprised, right? Those 2lb weights I lifted in Toronto obviously prepared me for this. 

I've been faithful to my home workouts too. The boys have been doing them with me and realizing just how tough they are. 

I'm extremely proud of the fact that I can do FIVE girl push ups in a row. Ohhhhhh yaaaaaaa. Watch out push up people of the world!

Leave your computer for a minute and do a burpee. Or a push up to plank. 

Sounds French or something, eh? 

It's nutz and awesome. 

In other exciting news, we've had some news visitors. Literally. 

Because it's National Organ and Tissue Donation Awareness Week, there's been lots of talk about it. In fact, the NS Minister of Health is opening up discussions about presumed consent. 

Unbelievable!!! Fantastical!!!!

Presumed consent would change everything. It would save so many lives. 

I've been interviewed by some news stations and have another interview tomorrow. The best part is one of the stations' camera man looked at me and told me that he was on the fence about organ donation until he met me. 

That is why I do what I do. 

I know that people are scared of death.  I know that they don't want to talk about it. Therefore, organ donation isn't talked about. 

BUT if someone somewhere didn't talk about it, I'd be dead. 

We need to talk about it. 

Think about this. Some day you, or someone you love, may need a tissue or organ transplant. 

What would you say about organ donation then? 

Would you want your life saved? Or your loved ones' life?

I just want to do my part. I want to honour my donor and their family. I want to raise awareness to help others on a transplant list. And others who are not yet on the list. 

Having your organs duck out sucks. Knowing there is still a chance for life doesn't. 

Workout hangover

I'm alive!

I didn't collapse and perish in a pool of sweat.

I may have realized at one point that I was the only one still on the ground at the end of the workout, but...hahaha! I did not die.

So that's cool.

I really and truly feel amazing. I feel like I can do anything and everything. I'm pumped to take on challenges and want to prove that I can do even more than is expected of me.

***ummm, perhaps I shouldn't have written that***

We have awesome trainers. They have this ability to reach that part inside me that really wants to listen. That's huge. They are the perfect motivators for me.

Slowly dying next to the other recipients, oh oops, I mean working out next to the other recipients, is also incredibly motivating.

I am definitely someone who needs workout buddies.

I am also someone who needs a little bit o' competition.

Trevor is 6.5 years post. He is already in great shape. He will be a beast after our 12 weeks of training. Therefore, I need to become an even bigger beast.

Here is what I imagine we will look like in 12 weeks:

Trevor

ME

I'm clearly WAY scarier.

We did push ups and sit ups - like seriously, who in the world can do a freaking sit up? They are crazy. I thought I was way stronger that I am. I mean, I lifted 2 huge pounds every day at physio in Toronto.

Come on!

I managed to pull off 2 sit ups in 1 minute. Yes, I will autograph whatever you want. I am unstoppable. Tell your friends.

We did a few tests at the beginning and will repeat them in 12 weeks. I'm praying that I'll be up to 3 sit ups by then...

Or 30.

We did lots of other ridiculously hard stuff. I loved every second of it. I promised my donor that I would take care of our chunkers. And now I am. Like for real. I hope he/she is proud. I also hope he/she keeps me going.

I'm sure he/she will push me when I feel like giving up.

Cause I can't.

I'm doing this for both of us.

Cause he/she can't.

We are meeting once a week as a group and need to also workout every single day (even when I'd much rather sit on the couch eating Doritios) by ourselves.

I'm proud to say I did it today. I also drank water. Cause I'm cool like that.

Training Day # 1

About to start training. In 5 minutes my chunkers will be put to the test. 

How will they react...

5k Lung Run

On Saturday, Brad and I laced up (after putting on our cool "running clothes" - man I need to invest in some) and headed into Halifax to "run" our guts out.

Look at my seriously awesome kicks!

The Organ Grinders entered a team in the Credit Union Atlantic Lung Run. The run is a perfect idea. It's to promote lung health.

The following is taken straight from their website:

"Known as the flattest, fastest couse in Atlantic Canada, the Credit Union Atlantic Lung Run offers a unique course described by runners as the best running route in Downtown Halifax. Our runners enjoy views of the stunning Halifax Waterfront and the bustle as they run throughout the heart of Downtown Halifax."

Hmmmmm. Did I enjoy these stunning views?

I could barely focus on keeping one foot in front of the other, especially at the end. Yes, the views are gorgeous, maybe next year I'll be able to appreciate them more.
 

An actual photo of Brad at the event

Brad was my cheerleader. He was by my side the whole way through. He kept me focused and non-whiny. He set goals and we met them (for the most part). 

We would walk for a bit and then run "from here to those lights...to that sign...to the train tracks...to the cop standing there."

My chunkers held up. Seriously, they didn't fall out. 

Even if they sometimes snapped, "Ooooxxxxyyyygggggeeeeeeennnnnnnnnn???" 

Divas!

The bigger issue was my legs. My calves were tightening at every step. They were screaming at me to back off. Begging me to slow down. Threatening to shut down.  

Burn. Aren't you supposed to feel the freaking burn???

I HATE the burn. 

BUT...

I loved it at the same time. With every step I took I knew I was accomplishing something. The walking steps were great, sure, but it was the jogging steps that had me feeling like a beeeast. 

Un-freaking stoppable! 

Except, of course, when I stopped. And walked. Breathing like a beeeast.

We were trucking along and Brad is telling me that the finish line is just around the corner, we're almost there, dig deep, blah, blah, blah.  

I'm pumped and can't frigging wait to be done. 

"Just around the corner, Jess. You can do it!"

As we're going around said corner, a woman is there encouraging people to keep going. Then she says, "good job guys! You're almost at the water break!"

I'm sure my face contorted into something highly unattractive and I said, "Break? What do you mean BREAK? You mean the end, right?"

When she said no and then something about needing to still go down by the boardwalk and yada yada yada, I wanted to slap someone. 

Good thing Brad is much faster than me. 

Brad says my face got extremely red and pissy looking. 

I say - good observation. 

We kicked it up a notch to get through the crowd (although I couldn't jog through the whole crowd) and then made our way around the boardwalk. 

The "cheerleader people" are great. But none of them would trade places with me??

Trevor - so inspiring...I'm determined to catch up!

The entire race, I had my sights on one person in particular: Trevor's (a fellow double-lung recipient) wife, Nancy. I wanted to stay ahead of her and cross that finish line before she did. I knew there was no way I could keep up with Trevor. Although I did at the beginning. 

Silly girl. Trevor has been active since his transplant. He's the person I've been motivated by since pre-transplant. I always wanted to be just as amazing as him. Over 6 years post - my guess is that he's got some pretty sweet chunkers himself.

I stayed ahead of Nancy for just over half of the race. And then...I have no idea. I ran out of steam? She downed some red bull and grew some wings??

Good job Nancy! But watch out next year!

When we left the boardwalk we could hear music. When you hear music you know the end is near. The music pumps you up. Gets you excited and stuff. We kicked it up again. I pushed myself hard core.

You should have seen me; I didn't look at all exhausted or disgusted. I was going, going, going...and the finish was right there!!! and then my chunkers and legs revolted.

Brad's long legs crossed the finish line before mine.

Of course, but not next year!

My time: 42 MINUTES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WoW!! WoW!!! WoW!!!!

I was, and still am, extremely proud of myself. I was emotional after crossing the finish line and tears were threatening to spill from my eyeballs, but somehow I managed to hold them back. Plus there was so many people there and I didn't want to look like a big baby.

I did it. I actually jogged.

But just wait. This is just the beginning. JUST the BEGINNING!

Our training starts this week. I can't wait. I can't wait to see how much I can jog 1, 2, 3 months from now.

If any of you want to job with me, let me know. But you have to get some cool kicks :)

Tissues, Bones and Valves...

The Tissue Bank.

 

Why did I want to go there? 

 

There are lots of reasons. I wanted to be more educated on tissue donation. I wanted to meet the people behind the scenes. I wanted them to see the result of donation. I wanted to tell them how important their work is.
 
Also, having the pictures developed from my surgery ignited my curiosity. (I'd post those, but they'd be sliiiiightly disturbing to some readers - unless looking at shrivelled up, nearly unrecognizable crusties is your thing.)

 

Organs are not the only things donated. Unfortunately, there's very little known and discussed about organ donation. But that is nothing compared to tissue donation. 

 

Just how important is tissue donation? 

 

Here are a few life changing and/or life saving examples:

 

Corneas give the gift of sight. 

Bones are used in orthopedic procedures and to help cancer patients.

Tendons can help people walk again.
Skin helps burn victims. 
Heart valves save lives.

 

I've only touched on a bit of what tissue donation is about. Want to know more? Check them out here.

 

Organ donation, blood donation, tissue donation. I've had two out of three. Without them...I don't even want to imagine.

 

Thank you Tara! Thanks to the staff at the tissue bank for showing me what they do.

"The Alarm Clock"

Brad's alarm.

Yesterday.

If I had a very large hammer I would have smashed his phone (I have nothing against his phone - but his alarm is his phone). Or, I guess I could have just chucked it out the window.
 

His alarm went off at 5:40. However, there's this thing called snooze. The Snooze button is not your friend. Nor is it the friend of anyone around you who is enjoying a deep and beautiful sleep full of fantastical dreams.

The Snooze button is in fact your worst nightmare. It is narsty. 

Unless of course you enjoy hearing "Beeeeeep beeeeeeep beeeeeeep beeeeep" every 9 minutes. Or whatever it is.

The sound of an alarm is enough to drive any rational individual crazy. It makes my heart pound so fast I'm scared it's going to pound itself right out (and that would suck cause I've kinda already had my chest ripped open). 

My alarm was not due to go of until 6:30 (the difference is that my alarm is set to a really cool sound that wakes you up happy - or as happy as you can be upon waking before you're ready). Let's review.

Brads alarm - 5:40. Mine 6:30. 

Brad hits snooze 15 cagillion times. 

Jess is awake at 5:40.
 

Beautiful.

Solution: Hire Mario to break in through the window and take care of it   ----------->

It turned into a jam-packed fabulous day. After grabbing my much needed coffee, I met my friend Tara at the Tissue Bank. 

Holy wow. Incredible. I learned a lot. The tissue bank in Halifax is the largest in the country! Crazy. That's pretty cool.

BUT, I'm going to tell you all about it in a separate entry. Just hold your breath.

Afterward, Tara and I downed coffee before heading off to the "media event."

I've joined a group called "The Organ Grinders." Check us out here. We are transplant recipients who want to be crazy healthy and are training together with some pretty cool trainers. We are also preparing for the transplant games happening in July this year in Moncton, NB.


Man, I'm adorable.

Yesterday we met for the first time and CBC news was there to capture it.

We quickly got in to some exercises and today I'm trying not to cry as I crawl up the stairs. We skipped - yup, skipped. Haven't done that in awhile. I was certain that the rope would wrap itself around my body and throw me to the ground in a shrivelling heap. However, I survived it. And I think I'm a pretty sweet skipper. I can jump and avoid contact with that rope like nobody's business. Cause you know, 30 seconds is a crazy long time.

 

We also did the beloved squats (shout out to my Squat Squad!!!!) and some mountain climbers. I believe I did okay with those. I actually liked those. Watching myself on the news do them, however, I realized that I don't look exactly athletic while doing them; I look more like a four-legged insect attempting break dancing.

During our workout/interview, a fabulous group of teenagers walked by. I didn't see them at first. What I heard was a whizzzzzzzz, followed by a McDonald's pop exploding on the pavement in the middle of our group.

Pretty awesome, eh? Obviously, they think eating at McDonald's is cooler than working out. Well, I do love myself a Big Mac....don't tell my trainers!!!

Tara was adorable. And super tough. With a very stern look on her face, she screamed, "apologize right now!"

I'm certain they at least considered it.

Next, I headed to CF clinic.

 

All is great! Lung function was down, but I'm positive it's their machine, as my chunkers are fantastical. I could likely go all wolf-like and blow a house down.

 

I have breathing tests at the actual lab on Tuesday, so I'll just blow their machine through the wall to prove that my chunkers ARE fantastical...cause I'm cool like that.

The Attack

Cystic Fibrosis is a truly horrible disease.

One of my biggest issues with CF was that it wouldn't let me laugh. Every laugh turned into an exhausting coughing fit, leaving me struggling to breathe.

Something is funny. Perhaps someone makes a joke, a tv show has a funny moment, your puppy flips himself over and it's freaking hilarious.

You start laughing.

You are lucky to get out a few "ha ha's".

You feel it. It's deep in your chest. It's ripping to come out.

You try to stop it. You hold your breath.

It's not working. Lung disease doesn't allow you to hold your breath.

Your face is red. You're getting hot. Why is it so hot in here??

It breaks free.

The laughter fades...the rumble in your chest makes its way up and you are paralyzed to stop it.

You hate for anyone to see you like this, so you turn away.

You are loud. But you can't stop it. It thunders on like a freight train.

You spit up. You pray that this time you won't vomit.

You pray there won't be any blood.

It takes your breath. You sink to the floor, as you can't support yourself and at least then there won't be far to fall.

Those who know you are used to it, so they patiently wait until you are finished. Strangers, however, are frightened and keep asking, "Are you okay?"

You can't respond, for you are slightly busy having the wind knocked out of you.

Finally the coughing stops. But it's not over.

It takes minutes to calm down and catch your breath.

Breathe in....breathe out. Slow it done; get control. You are not dying today.

It's over. You can stand up now. But be careful...another attack is just around the corner.

It's a Gong Show!

I'm so excited!!!! There are so many awesome things going on.

I co-hosted a radio morning show today - 100.7 Hank FM. It was the second time and such a blast! Here is a picture of me:

Well, the coffee is accurate. Except our cups were much larger. I can't even peel my eyelids open without coffee.

Thanks for having me Jonathan! You're awesome!

I'm very grateful that they allow me on radio...I have to remember to behave myself on air.

It gives me a great opportunity to raise awareness of CF and organ donation. People likely groan when they hear me on there and know exactly what's going to come ripping out of my mouth.

We're doing pretty well selling our lottery tree tickets. But I want to do better. Please consider buying tickets if you are local. If you're not local, please consider sponsoring my team "Live Laugh Lungs" as we walk 5k for CF. Here's the link!

More excitement is coming. Later this month I'm joining some other transplant recipients in training for the Canadian Transplant Games. Eeeeeeeeek!

They have no idea what's in store for them! It's been for-freaking-ever since I've been active and, as I've said before, I run like Bambi. They have a lot of work on their hands and I'm assuming I will have lots of homework.

I wonder if I can use the excuse "my dog ate my homework"...

Actually, I'm pumped to start training. It's hard to believe that I'd be in a position to be able to run. Life's too short not to run...when you have new beautiful pink chunkers!!!