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!