October Already?!?!

Well here it is October already and I haven't posted in ages! Things have been a little rocky, but I think I'm finally over the hump and ready to say that this whole process was worth it!

Summer did not come without hiccups though.

In May, they found that I had a fungus growing in my lungs so I was started on more IV antibiotics. I was on them for 3 months so the drug would work to kick the fungus out! And it did work!! Fungus is gone!

The other IV antibiotic I was on for 6 months ended up poisoning me and I spent part of June and all of July in the hospital. I went into kidney failure and my liver was also having issues. I ended up with 12 extra kilograms of fluid on board and was very weak. When I first got to the hospital I couldn't even lift my head off of the pillow. My nausea was so bad that I did not eat anything for 3 weeks. They kept my nutrition up through TPN feeds through my IVAD. They did a bronch on June 24 and 19 days later we found out that the micobacterium absessuss that I was growing before transplant was growing in my new lungs. It was a devastating blow, but I held it together and got through it.

Throughout all of that I ended up losing about 30 pounds. To help gain it back and help take the pressure off of eating, they put a feeding tube in my stomach and I started nightly feeds which gave me an extra 2400 calories a day. It worked great!

Here it is October 5 and I'm back up to 125 lbs and feeling great. My breathing is way better. And the best news of all...I had a bronch a couple weeks ago and nothing has grown. That bad bug that I had before hasn't grown. We can't get too excited yet though because it could still grow after some time. But so far, everything is looking very promising.

My right lung is looking good and mostly healed up, but my left airway and lung still have some healing to do. Time. Just more time.

Right now I'm just hanging out at home for the most part. I did join a gym though and I go about 3-4 times a week. It feels great to be able to do stuff again without becoming short of breath.

Jumping into my car and just going is something I lovvve now! It's much easier without all the oxygen and hoses everywhere! I can also sing in my car again. So watch out, you'll see me belting out the tunes!

So many things that people take for granted I don't anymore. Like jumping in the shower, getting dressed, cooking suppers, doing dishes and going out in the cold. These were all things that I had a really hard time doing before that just come so easy now.

My donor is truly an angel that saved my life! I look up everyday and thank them for the amazing gift that they have given me!

New Look

I have redesigned the look of my blog! I hope you all like it and you still find it easy and enjoyable to read!!!

Hiccups

There has been many hiccups along the way. In January we moved to an acreage. Well my stepdad, Mike moved us to the acreage as my mom and I were in Edmonton. Its a beautiful house, but when we came home there was still lots of unpacking and organizing to do. Thank god for my mom who did everything and was a huge help. I was want to give a huge shout out to my sister who came over before I got to come home and completely organized my room and had it right ready for me! THANKS SISTER!

 After I got home it took me a while to adjust to my new life. I was still a little bit weak. Oh I forgot to add that when I had a routine bronch on March 6 they found that I had influenza A, which was not good and my immune system is so compromised. I was immediately started on Tamiflu for 5 days. My lung function also plummeted during this time. I was up to 56% and I dropped into the 40's. I thought I was over the flu after a few weeks but apparently I was not. I ended back in hospital April 23-29 because I was feeling so awful and my lung function continued to drop into the 30's. I had had a nasal swab done a week before this and they again found that I still had the flu. I was also swollen up like a marshmallow. They figured I had about 5kg of extra fluid on me. I was once again put on Tamiflu for 2 weeks and Lasix to get rid of the fluid. When I got discharged I was feeling better and ready to go home and get in a new routine.

A routine that consists of pills, iv med, breakfast, rest, lunch, exercises, rest, supper, rest, pills, iv med, and then bed. It sounds worse than it is though. I still get out with my mom and go shopping and such.

Here are a few pictures of us getting out and having a good time!

Relaxing on my aunts couch, which is where we stayed when I was discharged

Mini golfing at West Edmonton Mall. Something I couldn't do before! And now I'm a champ!!

Out for lunch with my mom and sister at the Highlevel Diner!

Mom and Stacey at the Highlevel Diner for lunch!

.....To Be Continued

Well, the road to recovery continued and the hallucinations (from the narcotics) started. It was really not pretty. They were so bad I was awake for 72 hours just staring at the wall. I hallucinated that I was being given a million dollars and they were putting on a concert for me outside. I was convinced my whole family was hiding this from me and I even tried climbing out of my bed (with all my tubes attached) to go and see what they were doing in the hallways. Turns out they were never there. But I could hear them, it was so real. Mom finally got me calmed down and all washed up one night and as soon as she was done I looked at her and said "okay, I'm ready for the party now." Mom couldn't believe it. I was so out of it. I also saw my sister chasing a monkey/dog under the chair in my room. Turns out she was at home sleeping. Those narcotics really made me crazy and I was happy to get off of them!

I was moved out of the ICU after about 5 days. I made it to the step down unit. Because of all of the antibiotics and new medications I was on I suffered with severe nausea and vomiting for weeks. I couldn't keep anything down. Eventually they started TPN through my IV to give me some nutrition. This lasted a couple weeks until my liver and kidneys started going all out of whack and not working properly. Then they decided to try tube feeds. Just imagine that gross yellow tube hanging out of my nose. I was a piece of work! Tube feeds were okay for feeding me but I still had to try and eat to but that didn't work. Just more nausea and vomiting.

Here is a picture of my lovely yellow tube hanging out of my nose! GROSS!!

They were running out of ideas of how to control my nausea so one day a miracle happened....my doctor decided to take the tube out and see if it was irritating the back of my throat and that was why I couldn't eat. So we pulled it out and suddenly I wanted a basket of fries from downstairs. Mom went and got me some and I ate the whole basket!!! Its funny how one day I can't eat anything and the next I'm eating fries! The next day I even had Wendys!

It was so crazy that mom actually took a picture of me eating my Wendys!

The nausea was what was keeping me hospitalized (my lungs and physiotherapy was going great!). As soon as I had 4 good days of eating I was discharged. It had been 6 weeks in hospital.

I still had to continue going to the hospital daily for my physio, which consisted of strength exercises and occupational therapy. I also have to continue on one IV medication for a year so we had to go to the medical outpatients unit twice a day to get my infusion. Here is how our out of hospital schedule looked:

6:00am: Wake up
6:30am: Leave the house
7:00am: Be at medical outpatients to start the iv med
8:30am: transplant clinic (Tuesdays and Fridays)
                or
              physiotherapy (Monday - Friday) We went after clinic if it was a clinic day
10:30am: Occupational Therapy
11:00am: Head home for lunch. We then had the afternoon to ourselves to do what we wanted, but  
                most of the time I was too tired to do anything so we laid on the couch.
5:00pm: Make a quick supper and eat
6:30pm: Head back to the hospital
7:00pm: Be at medical outpatients to start the iv med
8:30pm: Head home and go to bed so we can be up bright and early for the next day.

Here is me at the gym one day working out hard! These machines are what the rehab program consisted of. Lots of strength exercises! But look at me, clearly I'm killing it! I even had time to pose for the picture!!!

All of this continued for 3 months total. We were discharged from the hospital and rehab program on April 2, 2015. It was nice to know I was going home!

More about the surgery!

6pm. New Year's Day. Off I go, wheeled down the long hallway to the operating room. I remember scooting over onto the ice cold operating table from the stretcher the moment I entered the room. There were people dressed in green gowns, masks, and hats everywhere. The anaethesiologist then began her prep. I hadn't even seen the surgeon yet.

She started placing lines and tubes everywhere. I was connected to heart monitors, blood pressure machines, and iv's were being shoved in me everywhere. The  large iv placed in my neck was the worst. It was very painful and I was still wide awake.

Finally the surgeon came and introduced himself. The last thing I said to him was "Take good care of me please."

After that I was given some high flow oxygen to breath in and then I was off to sleep. I knew when I woke up my life would be very different.

Waking Up!

I don't remember much about waking up, but this is what i've been told. My surgery lasted 7 hours and I was wheeled out of the OR at 1:00am. My family got to see me at 4:00am, but only for a few minutes. I was in ICU and had lines everywhere. Appparently I had about 15 different things running and my nurse was just back and forth on either side of my bed adjusting everything. I still had my breathing tube in. I started out communicating by writing on paper. My artistic skills weren't good and my mom had fun trying to interpret it. I did give her a thumbs up as soon as I saw her though. 

At one point I started getting sick with my breathing tube in and freaked my mom out. We were both afraid of aspiration into my new lungs. But we learned that would not happen. It was a scary moment. My breathing tube was removed by 8pm on Jan 2 and I was placed on high flow oxygen for 2 days and then there I was, breathing on my own with my fancy new pink lungs!!!! (Thank you donor)

Jan 3. First time sitting up with new lungs. I was up! Sitting in a chair. Next thing I know I'm up walking too. It took a crew of nurses and physiotherapists but I was walking! It took that many people to help me move with all my lines and push a wheelchair behind me just in case I needed it. 

I was now beginning my road to recovery.

To be continued.......

5 Weeks Post

5 week update.

Sorry its been so long since the last update but it has been a roller coaster ride since day 1.

After coming out of surgery I began to wake up and had the breathing tube out late that same day. I don't remember much about ICU but i do remember it was a busy place. I remember when I had the tube in I couldn't talk so i was writing everything on paper. They got me up sitting the day after surgery and not long after that I went for my first walk in ICU with no oxygen! Time to cut up that old tubing!

I was in ICU for about 5 days. Then I was moved to the transplant unit where I currently sit and heal. There have been lots of ups and downs with the meds though. I was fighting nausea and problems with my kidneys and liver though. Good news is my kidneys and liver and finally back to normal with a few changes in meds. The nausea is still present as they continue to change meds and try and figure it out. They had to put a tube feed down to keep me nourished though. That wasn't pleasant having a nurse and radiologist shove that huge thing down my nose. It is helping keep my eating though.

Good news through it all is that my new lungs are in perfect shape. My SATs have been between 92-100 the whole time!

I started going to the gym a couple weeks ago and i can tell i'm getting much stronger. No arm exercises yet due to the incision but lots of leg work. I'm also going to yoga everyday to help give me more strength as well. Any little thing helps.

I've had lots of gifts and many thoughtful cards and visitors. A friend of Mike's, Paul, even got me a curling broom signed by John Morris. That was a pretty awesome thing to get.

Some of my staples and sutures have come out but I cant really feel any difference. Mom has been here helping me a lot and so has my sister.  Thank you!

4 hours and 45 minutes into 2015 the call came!!

 GOOD NEWS!!  This update is not being posted by Melissa because the time has come!!

 It's kind of ironic that after Melissa's Facebook post from New Years Eve we're in Edmonton

"2012, 2013 and 2014 didn't deliver lungs, here's to hoping 2015 will be better!"

At 4:45 am January 1st the call from the transplant coordinator came in. They have suitable lungs for Melissa and we have 2 hours to travel to Edmonton to get the ball rolling.   Wow, what a moment!! The house lights came on and the packing began. This is what we have been waiting for 2 1/2 years!! Melissa dusted off her bag that she packed when she was first accept for a transplant and Joanne started throwing clothes from her closet. Wow!! Is this really happening?  Within 20 minutes the journey to Edmonton was under way. Time to chat about the future, no oxygen hose wrapped around the pets, no coughing fits in the middle of the night and best of all Melissa will be able to take a deep breath like the rest of us!! Something that she has never been able to do.  

Shortly before 7am we arrived at the hospital filled with excitement that this really might happen. Time to get admitted and get this game started. As we sat in Melissa's room she says "Mom, Am I dreaming? Is this really happening?"  Joanne laughed and said " I think so!"  Shortly there after the transplant coordinator entered the room and introduced herself and said that everything was a go. Time to start the tests and fill out some forms. Time to share the good news!! What better way to start a frenzy then to post it to Facebook!!   

 Well it worked!! The text messages, FB posts and best wishes started flooding the bandwidth. Over a 100 likes on Facebook and counting and Melissa says "Mom, look at all the likes I have!!"  All the communication from loved ones helped to pass the time away. First they said that things would start around 2 then it was pushed to between 4-5 and then 5:30.  At approximately 4pm it was time to shower and shave the inch long hair from her legs.  She said that, not me!! Into the shower she goes with her little care package that has been tucked away in here bag since the beginning. Then the call for help, "Mom I can't shave my arm hair!! " Joanne entered the bathroom to help with the process and the laughter began.  It sounded like two little kids in a splash park. Once that ordeal was over, Melissa  started to brush her teeth. Another laughter outbreak?? What the heck is going on in there?  Ha ha Melissa's tooth pasted was expired!! Who knew there was expired date on tooth paste??  As 5:30pm came closer and closer the time was not changed. Wow, this might be the time that we have been waiting for. As the room full of family paced and watched the clock, a stretcher arrived outside the door for a special pick up. It was time!!! 

 Like a trooper that she is she walked right over to the  stretcher and climb right on. As she was pushed down the hallway to the OR the family followed nervously behind. This is really going to happen!! Quietly we all entered the elevator and down we went. Slowly Melissa was wheeled into the prep room.  Time for another picture!!

A round of hugs and kisses and at 6:05pm and she was taken to the OR.  Time for us to get some rest. At 1:15am the surgeon talked to Melissa's dad and said that the surgery went really good. Finally at 4am we got the opportunity to see Melissa for the first time after the operation. Wow!! She looked great. Sure there's tubes coming from everywhere and medication being pumped from high tech machines but she looked great!! What a relief that everything went so good. 

Cold winter days = Long days inside!

Well, summer and fall have come and gone and I don't feel I am much further ahead in this lung transplant journey. It is turning into a never ending marathon. A marathon I feel I will complete and win eventually, but the miles along the way are very long.

With the cold months upon us, I find myself spending a lot more time at home, where it is warm and comfortable. The days seem to go by much slower, and I find myself thinking about things a lot more now.

Why me? That is one thing that has been on my mind lately. Why me? Why was I chosen to be the one to go through all of these struggles. Is it that I hit the unlucky jackpot with genetics or is it because everyone knows that I am strong and can deal with the battle at hand.

Don't get me wrong, I am not wishing my illnesses on anyone else, I just want to know why me? I don't want anyone to take this as I am feeling sorry for myself either. I am one of those people in the world who has big plans. Plans to finish University, start my teaching career, get married, and start a family. Even though I have all of these dreams and goals in life, I have been thrown a curve-ball. A curve-ball which I intend to hit out of the park, but still I ask myself, why me? Why did I have to be thrown this curve-ball. Why does anyone have to be dealt these cards in life?

I miss all of the things that I could do before. Simple things like laughing, showering, and walking have become chores now. I find myself thinking about all of the dreams I have for my future and that is what is fueling my fire. I tell myself that "one day I will get there, and I will accomplish all of my goals." All while knowing there is a chance I will not. I do not want these thoughts of failure clouding my "road to new lungs marathon." Instead I tell myself to push these thoughts aside and only focus on the positives. I will breathe easy again. I will laugh like crazy again. I will belt out horrible tunes in my car again. I will run around again, free of tubes and coughing fits.

Even though I am remaining relatively stable, it does not make this journey any easier. My life is on hold. I am 23 years old and my life is on hold. I would love to be going out and doing everything that I once did before my lungs turned on me, but instead I find myself consciously thinking about every breath I take and hoping to be able to keep taking many more!

I know this is starting to sound depressing, but I would consider myself the furthest thing from depressed. All of these thoughts have been encouraging me to fight. To fight harder and longer than I ever have before. To keep going. To keep marching forward. I will not let my disease win. I will not let these 23 year old nasty lungs destroy me.

I know that I am strong and capable of fighting this. I have an amazing support system behind me in terms of my family and health care professionals. They are all on my side and will not let me give up either. Giving up would prove that I was dealt a hand in life that I cannot handle. I CAN handle this and I WILL beat it!

So when I get back to thinking "why me," I have to tell myself, "yes" maybe I did lose out on the genetic lottery, but I would not have been dealt this hand if I could and would not handle it. I am a fighter and I WILL NEVER GIVE UP!!!!

Back to the Blogging World.....Again

Well, I'm back again for another not-very-exciting update. And not-very-exciting- only because I haven't received my new windbags yet!

I see the last time I posted was February so I guess I have a little bit to catch up on (if I can remember that far back).

It is the middle of June already.

I guess it wasn't a very exciting winter as I don't really have much to say. I made it through with no hospital admission and have been relatively stable. I'm still going to clinic in Calgary monthly. Those docs down there sure have me on a short leash! Although I must say, they are doing a great job!

I could babble on and on about how I've been feeling, but what's the fun in that. I'm fine.

My PFT's are stable.
My weight is stable.
Not diabetic yet.
Still taking lots of drugs.
Etc, etc.....

First I would like to start by complaining about how sick and tired I am of being on a leash 24/7. And no I don't mean the leash I mentioned earlier (you know, the short one my docs have me on). I mean this 55 foot hose that follows me everywhere and nearly rips my ears off about 2000000 times a day. I mean, I don't even know what it is like to get up off the couch and run to the fridge anymore without ensuring my hose is free of obstacles. Speaking of obstacles, my dog, Chance, is my biggest, most annoying obstacle that I have to overcome on a daily basis. I mean, I know he loves me a lot and wants to follow me around, but stepping/laying on my hose every time I want to go anywhere is just no longer acceptable. Note to self: Research online how to train your dog to stay OFF your oxygen tubing. Other people have this problem, I'm sure. There must be articles about it!

Oh, I do love my dog though. Here let me show you his beautiful before and after pictures of his haircut this year.



















Pretty cute eh?

Another thing I have been thinking about is how I don't even remember what I look like without oxygen on. It has been over 2 years now people! After my transplant I'm going to look in the mirror and not know who it is looking back at me. Also, I've established habits with my oxygen that are going to be hard to break. For example, getting dressed.

Step 1: Oxygen off
Step 2: Shirt off
Step 3: Oxygen back on
Step 4: New shirt on
Step 5: Oxygen off, feed under shirt until it comes out the bottom
Step 6: Oxygen back on, on top of shirt

I mean after transplant, how am I just going to cut out Steps 1, 3, 5, and 6. I am going to reaching for tubes that don't exist and people may look at me strange. Although, changing my shirt in public is not something I am planning on doing a lot of after transplant.

Another thing with this oxygen.....what's it going to be like to just put on a pair of shoes and walk out the front door. I mean right now its a 5-10 minutes ordeal.

Step 1: Walk downstairs
Step 2: Grab portable oxygen
Step 3: Disconnect oxygen tubing from home oxygen
Step 4: Reconnect oxygen to portable oxygen
Step 5: Find and put on shoes
Step 6: Grab a jacket
Step 7: Pick up 2000000 pound machine and lug to vehicle

Think about this one. After transplant I can say goodbye to steps 2, 3, 4 and 7. How exciting, what am I going to do with all my spare time?

Those are just a couple things that I can look forward too after transplant. There are going to be soo many other things that I'll be able to do without worrying about oxygen. Like showering, ooooh showering. That will be nice to do tube-free. I'm starting to realize how dogs feel when they're on a leash. But don't compare me to a dog, because I have much more self control and don't NEED this stupid leash for that reason.

Now that I've complained for a bit, let me tell you about a couple good things!!

1. I became an aunt again. My stepbrother and his wife Trina had another baby, Connor! (see below)
2. My nephew Kaden turned 2
3. Mom and I are going on a mini-vacay to Jasper in July (which I'm super stoked for!)
4. I went to see Luke Bryan in Edmonton (see pics below)
5. Pool ended, which is kind of a bummer, but I'm actually going to play on the team starting in Sept.
6. I volunteer once a week and the mall selling pull  tickets for the hospital
7. There is a big golf tournament hosted by Cheers Pub this weekend and I am volunteering there. They are having the tournament for Cystic Fibrosis. It's going to be awesome.
8. I survived the freezing winter and can now venture outside more!
9. Big Brother is coming back on in 2 weeks! (I can see numerous eye rollings going on right now)
10. I get to go camping again.
11. I got a sweet hammock to lounge in the backyard now!

I know there's more good stuff, I will think of more later!

Yes, that is beer and yes it was damn good!

Mom and I enjoying the show!

My new nephew, Connor, and I.

Kaden's 2nd Birthday!

Baby Connor! Isn't he the cutest?!

Ooh, I have also decided to try and grow another tomato plant on our deck! Wish me luck because I CANNOT wait for fried green tomatoes! 

Right now, I'm getting pretty comfortable with having time to just relax and hang out this summer. I mean work and school, what is that anyway? Don't get me wrong, I'm definitely ready to go back and finish my degree, move out, and start working but right now the sun is shining, I'm feeling good, and the beer is cold (don't worry people, 1 every now and again won't hurt a girl). 

Be back soon! 

Flappy Bird!

Well, I have found one of the most mindless things to do to occupy my time. It is also an addiction that is ruining my life. Two words....FLAPPY BIRD!

I have finally reached a three digit high score and I think it might be time to retire and move on to bigger and better things!!!

Went to CF clinic yesterday and things are going pretty good. I've lost 3 kg's since September so I need to gain at least 1 kg back by the time I go back to clinic in a month or they will not be very impressed and might start talking about a feeding tube. BLAH! That's not happening so I must EAT EAT EAT!

Well I'm still here waiting...

Its been almost 19 months of waiting on the transplant list for new lungs. It is times like these that I wish I could just go on to eBay and buy some new ones! 

Santa forgot to bring me new lungs for Christmas again this year.

I've been lucky and have not been hospitalized since September...knock on wood! My lung function is stable and I'm feeling pretty good, but I'd still like those lungs to hurry the heck up!

What else is new with me since my last post you ask? Well, I had a lovely Christmas, spending time with both my mom and dad. Lots of turkey and fun! And got spoiled, of course! 

Other than Christmas it has just been my daily routine of The Price is Right, Dr. Phil, and Ellen. If nothing else, I'm learning a lot from Dr.Phil. Haha!

I've been poked and prodded a few time since my last post as well. You know, the normal stuff, blood work and port flushes. No biggie anymore!

I try not to let little petty stuff bother me anymore. I always just think that there is bigger things to worry about in life besides the lady that just cut in front of me in line or the employee at McDonalds who forgot to put my sweet and sour sauce in the bag at the drive-thru (not going to lie, that still kind of bugs me, I NEED my sweet and sour sauce to eat my nuggets). Staying positive is pretty easy when I am remaining stable. If I start to take a turn for the worst, watch out, you probably won't want to come within 10 feet of me and my new-found negativity. But when that happens, I have my lovely mom and boyfriend to snap me out of it!

I also enjoyed a lovely day at the spa. 5 hours of being pampered. I was a fantastic day. Mani, pedi, and massage all while be offered chocolate, strawberries, and tea! I might have to splurge and indulge myself again sometime! It was  a great way to forget about everything going on!

I always say that I will try and update sooner, but I always just fall into the same pattern and forget all about updating this thing. I will say it again though....I will try my best to update the blog when I have any new and funny stories to share. Or if I ever get called for transplant I'll have my mom on here keeping everyone up to date! 

 

Still Looking Forward

Well another month has passed and not much has changed. I've been feeling really good since getting out of the hospital on October 3. My lung function is stable. The only difference now is that I have lost about 5 pounds because of another nausea episode from antibiotics. Back to the high calorie diet for me!

I've been keeping busy going to pool twice and week and seeing my dad on weekends. I was up to Edmonton last Monday to see the transplant team again and I got the same response again...."just keep waiting, it's going to happen eventually." There is a real lack of donors right now. Alberta is the lowest province in the country for its donor rate.

Speaking of donor rates. A couple weeks ago my mom, sister, aunt, and I went up to Edmonton and participated in a rally about organ donation and Bill 207. Bill 207 is the legislation that would get Alberta a donor registry. This would allow people to sign up to be an organ donor when they are renewing their drivers licenses. The Bill would also increase awareness for the need for organ donation. Anyway the rally went really well. We've been trying to increase donor awareness as much as we can.

I have been waiting for these new windbags for 16 months now. I never in a million years thought that I would be waiting this long. As long as I keep feeling the way that I am, I can just keep waiting for the perfect pair. I am more than ready to go under the big ole knife though!

Hello Again

Well, I see I'm slacking off with my updates again. What can I say, I've been busy! Pool started again the beginning of September so I've been going with my dad. I am the team scorekeeper, so I guess that makes me pretty important, haha!

We also went camping a few more time in September. I even rode the quad. Just strapped my oxygen on the back and off I went. I even managed to split tons of firewood (with the help of a log splitter). I also played some beersbie (sp?) and found out that I am terrible at throwing a frisbee. I guess I need my stepbrother, Joey, as my partner next time (him and I kicked ass at my dads house).

I'm currently in the hospital again. I've been here since last Monday. It was time for another "tune up." I'm getting out on Thursday though, which is the day before my birthday! It's been pretty uneventful being in here this time. I'm feeling really good. I've been doing lots of people watching in the lobby because let's face it....there are a lot of weird people that come in this place and it is my only entertainment.

That is all for now!

Pre-Transplant Video

I finally got the video I made to post to youtube so I thought I'd share it again.

Click the link below to watch!


Pre-Transplant Video

Waiting, Waiting, and More Waiting

Well, it has been over 13 months now waiting for a new pair of lungs. I never thought that I would be waiting this long when I got on the list last July. I thought "heck, this won't be a long wait. They will find me some new lungs, put them in, and then I can get on with my life." Unfortunately it did not work out like that. It is definitely true that waiting is the hardest part. I've heard that even the recovery seems easier than this dreadful waiting game. Every time the phone rings I look at the display hoping to see if it reads "University Hospital". But still nothing.

On the 12th of August my mom and I went back up to the transplant clinic for a visit. We met another one of the doctors there and he was a very nice man. He answered a lot of our questions and reassured us that they are still thinking of me and searching for the perfect lungs for me. It's always nice to visit the clinic there to get that reassurance because this waiting is so hard. Sometimes I feel as if they have forgotten about me, but I have to quickly erase that thought from my head and know that they are doing their best.

The main problem in finding lungs is the lack of donors in Alberta. I've been thinking of ways that I can help spread the word about the need for organ donation. I know that it is often the last thought on people's minds when a loved one is dying, but it is so very important. I hope people will have conversations with their loved ones about their wishes regarding their organs if something was to happen to them. I am also thinking of writing to a few newspapers in Alberta to see if they would help me in raising awareness.

On the 19th of August I was back down in Calgary seeing my regular CF team. My lung function is relatively stable, but is also declining very slowly. I also put on another 2 kgs and am now a whopping 124lbs. Perfect weight for surgery! The doctor is thinking of hospitalizing me this fall for a tune up. I usually get sick in the fall and end up in the hospital anyway. I certainly don't need to lose any more lung function though! If I can stay the way I am right now, than I do have time to wait for the perfect lungs, but if I start declining faster there will be a greater urgency for lungs.

I've been keeping pretty busy. We've been camping a few times out at the lake. I also went in our boat for the first time last weekend. The weather has been nice so that makes things a lot easier for me too. We are planning on going camping for the September long weekend as long as it is not pouring rain. I'm trying to get out a do a lot while it is nice out because I know when it starts snowing and getting cold I will be cooped up inside. I do not do well in cold weather.

I guess all I can do for now is keep waiting and hoping that a suitable donor comes along soon!

Oh, I've also been having dreams lately that I have been called for transplant. That has to be a good sign right? I think it means that I am emotionally and mentally ready to get in and get this done! Last night I dreamt that we were sitting on the couch watching tv and I got the call. Other dreams have included me waiting at the hospital to go into surgery, etc. Mom also has been having dreams about me getting called. I know it HAS to be coming soon!

Dean Brody + Severe Thunderstorm = Trapped in the Centrium!

Before I get into the great thunderstorm story I thought I'd announce some good news! Went to Calgary last week for a check up and things are all pretty much back to normal (for me)! Blood work is better and lung function is a tiny bit better. I'm hanging in there!

Westerner Days has been going on this past week in Red Deer. On Thursday I went with my mom and sister. They pushed me in a wheelchair and we took in all kinds of shows and looked around a bit. We also indulged in the famous fair food! Mmmm! It was a pretty fun day. 

Saturday night we had tickets for Dean Brody.

It was a super nice day out and we headed in about 6pm to hang out for a bit before the concert. The concert was at 8:30pm and it was great. He is a great entertainer. At the end of the concert a security guard came up to us and said we had to leave immediately because there was a severe thunderstorm coming with the potential of a tornado. We headed for the door but when we got there we were told that everyone was to go back in, get away from the windows, and sit in the lower bowl. No one was allowed to leave. They had security all over, keeping people from leaving. About 2 minutes after we were back inside the rain and hail started. We couldn't see outside but it was super loud of the roof so we thought the hail was huge (we had heard that it was golf ball size). All mom worried about was her new car!

Finally, after about 10 minutes the hail quit and they allowed people to leave. So we headed out. It was still raining, but barely. We had to walk across the whole grounds to get to the car. We started walking through the food and midway and saw that a lot of the grounds were flooded. All the games were shut down and so were the rides, of course. It was almost eerie walking through because it was like a ghost town. There was no one else around. Just a bunch of carnies shutting everything down. We were almost to the car, we just had to cross one road. When we got to the road we saw that it was flooded too. There was probably a good 6 inches of water flooding the road. Mom was pushing me in my wheelchair and was worried she wouldn't be able to get me to the car. And it was pretty chilly out too. Finally, Mike and I told her to just go. So Mike helped lift my wheelchair down from the curb and we walked through the water. My feet got wet, but it was all good. We made it to the car and headed home. It was quite the adventure! Oh, and the hail was only about pea size, the bigger hail hit the north end of town. 

When we got home there was a wicked light show going on and then it started pouring and we all headed to bed!

Mom`s on Holidays, Let`s Party!!!

Mom is on holidays for 3 weeks!!! That means no more sitting at home by myself and more super sweet outings and adventures.

Day 1: Shopping!

Day 2: Stettler Train Ride!
We headed to Stettler in the morning and hopped aboard our train at 11:00am. We were headed for Big Valley where we would have a lovely roast beef dinner and then take part in the Canada Day Celebrations there. On the train there was entertainment, snacks, and most importantly, cold beer! It was smoldering hot outside (like plus 3000 I think). We walked up and down the train, looking drunk. Not drunk from our cold beverages, but from the swaying of the train. I was just waiting for an old lady to just teeter over!

On the way there we were robbed! Robbers on horses attacked, but the man on board saved the day! The robbers did steal some of our money though! We made it to Big Valley and had a delicious lunch. We walked around the boardwalk in Big Valley then headed down to the train station for the Canada Day Affirmation Ceremony. It was a great day!

At 3pm our train departed Big Valley and I was just about out of oxygen. Good thing we found a plug in in the saloon on the train! And heck, while were in the saloon might as well have another beer! The heat is making beer taste delicious! We sat in the saloon the whole way back (don`t worry I only had 1) and listened to a couple playing the guitar and singing a bunch of oldies! Mom loved it!!

We got back to Stettler and headed home.

Here are a few pictures!

No News in Edmonton, Let's Drink!!!

On June 23rd we headed up to Edmonton stay overnight in a hotel because we had to be at the Edmonton Clinic at 7:30am Monday morning. It was just my mom and I. Here is a picture of our little home for the night.

Monday morning we got up and headed over to the clinic. We got there in time for me to be poked and 10 vials of blood be taken from me. Just what I wanted to do at 7:30 am....get poked!!! After that I had an electrocardiogram. Then it was up to give those doctors a talking to and see what is taking soooo long!

We learned that they haven't been doing many transplants and are in a real dry spell. They are hoping it is going to turn around. More donor awareness is a must!! They haven't forgotten about me though, so that is a bonus! They are still saying that as soon as they find a match I will be called. Doesn't sound like there is anyone ahead of me. I'm sooo ready! We go back to Edmonton August 12. That's mom's birthday. Maybe they will have better news for us then!

After seeing the docs I headed over to the hospital rehab department for a 6 minute walk test. They hand you this fancy stopwatch and you walk around this big block and count your laps. Last year I was able to do 6 laps in 6 minutes. This time I only got 4.5 laps. I guess I got lazy.....or these old windbags of mine are really starting to let me down! Stupid things!!

Auntie Lynn met us up at the hospital and it was decided we would go to West Ed and look around for a little while. I`d get to be chauffeured around the mall in my sweet wheelchair. First stop....HOOTERS! Time for a beer. All of this waiting is getting ridiculous, but nothing a cold beer won`t help! We shared a jug of beer and some appys. I forgot how delicious those wings were!

Terrible picture, but damn was that beer good!!!

After a little looking around I was loaded down with bags and we made one last stop at the most important store in the mall.....THE CANDY STORE!!! I spent my $15.00 on candy (I hope my clinic team isn`t reading this, and if they are I eat it very slowly. HAHA!) then we headed home!

It was a long day but we survived and are now back at home to continue waiting!

Calgary Floods 2013

We were in Calgary on the 19th of June and two days later the city was underwater. The Bow and Elbow rivers both exploded with water and breached their banks. It was the worst flooding in years. Many parts of Calgary along the rivers were evacuated and the downtown core was underwater. Over 100,000 people were evacuated due to the flooding. The floods did not only affect Calgary but many other towns as well including High River, Medicine Hat, Bragg Creek, Canmore, and many many more.

I just feel sick for those people who have returned home now to find their basements full of water and no insurance coverage. A billion dollars has been set aside from the Government to help victims of the flood.

 There are a couple of picture above of the flooding. The cleanup has begun now.

The Saddledome and Stampede Grounds also took a big hit! There was water up to the 14th row in the Saddledome. They are working hard to get everything cleaned up and ready for the Stampede which starts on July 5.

Cougar Creek in Canmore. Peoples backyards are gone!

I have a sick feeling in my stomach for all of those affected by the flooding. Albertan's are strong and they will pull through!

A Day in Calgary

On June 19 we went back to Calgary for another check up. Things were okay, but not great. My PFT's are now down to 23% and some of my blood work was out of whack. I had to go down to the PFT lab this time though. I had to do the "panting in a box" test. You put your hands on your cheeks and pant like a dog. I look pretty badass when I'm doing it too. The other test is the breath holding test. Really....tell me to hold my breath for 10 seconds....like these lungs can handle that. Haha! Both tests were tricky and I was exhausted after but I got them both done. After PFT's it was back up to have blood gases done...yuck!

The man that did my blood gases was awesome! I think the part that hurts the most is holding the gauze on the artery after so it doesn't bleed into the tissue in my wrist. I never knew that getting the artery in your wrist poked would be sore for so long after the poke. My wrist was sore for a couple days, but nothing major.

I'm feeling pretty good though. The doctor told me to expect to get sick again and need iv antibiotics. I'm determined to prove him wrong. At least if I get sick this time he is going to try different drugs as to not make me so sick this time. Its all about getting the right balance of drugs to fight off this bad bug I have.

After the doc we had to head over to a different clinic and I had to have a echo-cardiogram done. It was the first time that I've ever been told that they want my sexy hospital gown to open in the front. It made me laugh a little. I had the cutest technician ever. After about 30 minutes that test was done and it was off to another one at a different clinic.

Off to the last test of the day. An easy simple bone density test. And what a test it was. Well, the test was fine, the waiting room was a different story. Mom and I started off in a huge waiting room, which was fine. Then the lady called me and I left mom and headed back. The lady got me to get changed and put my things in a locker. The only thing I had with me after that was the key to my locker (and the clothes on my back of course!). She took me to another waiting room that looked like a little office cubicle where I waited by myself for a long time. I looked up at the tv and all I saw was boobs!!! Old boobs, young boobs, saggy books, firm boobs, just a lot of boobs. I was in shock, I thought why would a place like this have such a show on tv. Confused I continued to watch the awkward show. Soon I realized it was a show dedicated to showing woman how to perform a self breast examine. It was quite the show. I guess they do mammograms at this place too so it was appropriate, kind of! After all that excitement I went in and had my test done and then mom and I headed home.

Mom ended up going into Red Deer when we got home and was at a car dealership until 11pm buying a new car. It's pretty awesome!