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!