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!

The Monday Blues

Well Monday morning I woke up and I had had enough. I hadn't kept any food down for 3 days. My poor stomach. I have lost weight and was not impressed. These antibiotics are killer. I had been on them for 5 weeks by now. I made an executive decision to call my doc and inform him of my issues. It was decided that we would stop the iv's one week early. Thank goodness!!! The only downfall is that this specific iv med has a half life of 3 days so it will take a few days to start feeling better. It is now Tuesday night and I was finally able to eat a little supper and keep it down! Woohoo!!!

My lungs are feeling pretty good and I haven't had those killer headaches in over a week. I think I am on the mend!!!

Good news to report about my friend, Lorna. She received her living donor transplant on Friday and is slowly improving with time. Her mom and sister and in a lot of pain still, but are also improving with each passing day. Her sister had a collapsed lung today, but I'm sure it will improve with more time. Lorna is still sedated but her fluid levels are coming down and they hope to back off with some of the meds very soon. She is still in critical condition though. I understand living donor transplant require more time to heal and I believe that she will be running laps around me after lots of time and rest. I am so happy that things have gone well thus far with her. I am hoping that she continues to recover and doesn't encounter any big hiccups! Can't wait to see you up and about Lorna!!!

3:30 AM Adrenaline Rush!!!

Before you all get excited, no, I did not get called for transplant in the middle of the night. You would've known before now if I did. So, no call for transplant, however, I was called to the door. Let me start at the beginning.

It's Saturday night and Mom and Mike decide to go spend the night at the trailer out at my aunts. They take my guard dog with them, so it's just me and the Fluff man. I'm feeling lousy (due to the iv antibiotics). It's 10:00 PM and I decide it's time for bed. I head downstairs, making sure every door is locked first. Then I jump into my nice, warm cozy bed and snuggle up for the night.

I am having a glorious sleep, finally. And at 3:30 AM I am awoken. By what you ask? A pounding on my front door that lasts at least 5 minutes before I am awake enough to get my bearings. I am still half asleep and decide I better get up and see what is going on. I carefully pull back the curtains and blinds in my room (careful that the person outside doesn't see me) and take a peek. I look up and see a lady on my doorstep with long dark hair wearing only a tiny shirt and jeans. After taking a quick peek I think to myself  "Stacey? What the hell is she doing pounding on the door at 3:30 AM wearing only that. Doesn't she have a key?"

After deciding it must be Stacey I head upstairs and open the door a crack. Much to my surprise it is not Stacey at all. Who is it you ask? Some lady who I do not recognize. Before I say anything she looks at me and says, "I'm the neighbor, call 911 please". I'm flustered and say, "yes" before quickly closing the door. I flip on the light and head upstairs. My heart is pounding now (getting out of bed so quickly and running upstairs is not good for lungs that hate you). I search for the phone. Found it! I dial 911 and nobody is there. It sounds like dead air. I start saying, "Hello, Hello?" over and over again. Finally a lady comes on and says, "For what town or city please?" I tell her where I am (I am alert enough to know where I am). Then she asks the next question, "Do you require RCMP, fire or ambulance?" I think for a moment and say, "I have no idea, some lady just came pounding on my door and asked me to call 911." The operator then says she is going to connect me to the RCMP.

The officer comes on the line and asks what is wrong. Again I have to tell her that I have no idea and explain, again, about the lady on my doorstep. She then says, "okay. I'll send officers right now. Can you stay on the line until they arrive?" Knowing I have no other option I say, "yes". She then asks me lots of questions: "How old was the lady, what did she look like, where did she go, can I see anything going on?" I tell her all I know and inform her that I cannot see the neighbors front yard very well. I did see the lady looking panicked hiding by the fence and going into their backyard. After about 10 long minutes two cops show up and I finally hang up the phone.

Being curious I go look out the window and see if I can see what is going on. All I see is 3 officers. One takes his super bright flashlight and begins looking around the yard. The two female officers go to the door. There was not much to see. After about 10 minutes of watching that, an ambulance rolls up and a stretcher is wheeled to their front door. Everyone goes inside the house and I stand and wait to see if any action comes. I wait about 5-10 minutes and decide that I am tired and head back to bed. I finally fell back asleep around 5:30 AM. I think I slept with one eye open for the rest of the night.

This concludes my 3:30 AM adrenaline rush. Mom and Mike arrive home safely the next day and I inform them that next time they need to leave my trusty guard dog at home with me. I also learned that next time I should just yell through the door and ask what they need. I guess it was pretty gutsy to open the door! I'm pretty tough!

IV Antibiotics 1, Melissa 0

Well, this is the second time that I will attempt the write this post. Apparently last time I was not paying attention and deleted it, UGH! Well here it goes...

A few changes in the health perspective since my last post. After stopping the iv antibiotics after 2 weeks, my headaches came back with full force. A week after they were stopped I called the doctor and told him that I thought I needed to start the iv's again but I didn't want to have to go back to the hospital and be admitted. He agreed and that Wednesday I went in and got my port re-accessed. We started home iv therapy Wednesday night. The nausea came back at me almost immediately. I was willing to fight through it as long as those killer headaches would disappear. It's been two weeks on iv's again and the headaches have stopped! The nausea is still hit and miss, but I am feeling much better. I agreed to remain on the iv's for 4 weeks total, so I have 2 more weeks to do. I can do it, I'm tough!

I went to clinic the Monday after I re-started treatment. I found out all my vitamin levels were low. So was my iron and hemoglobin. I have now increased my vitamins and iron. Hoping the numbers will find their way back into the normal range. Tomorrow is the day that my port needle gets changed again. Those are not my favourite days, but things could be much worse, right?

My Pulmonary Function Tests (PFTs) were also down a lot since I had done them 3 weeks previous. I am back down to 26%. Definitely ready for those new windbags! For those of you who do not know what PFT's are, here are the basics:
1. They get you to sit in this box, that happens to be much smaller than a jail cell (sometimes they leave the door open).
2. You are handed these fancy, stylish nose clips (so you cannot cheat).
3. The tube mouth piece thingy is adjusted to the perfect height.
4. Then the testing begins. You clip your nose, making sure you look stylish, then tighten your lips around the mouthpiece. Normal breathing....in, out, in, out....BIG breath in and BLOW!!! Keep blowing until you are basically purple and then another deep breath in. This measures the volume of your lungs. There are a lot of other tests you can do like panting and breath holding. Thank goodness those tests are not done very often.

 Above is a visual for those of you who are still confused as so how attractive I look in that box!

I'm hoping this is what happens after I get my new windbags installed!

I haven't been too busy or done anything too exciting since my last post (other than the med changes). I am now the proud grower of strawberries and tomatoes. I hope I can keep them alive long enough to get some deliciousness from them! I cannot wait for green fried tomatoes! We also planted a lot of flowers at our house, it is looking quite lovely outside.

The Cystic Fibrosis Great Strides walk took place on May 26, 2013 across Canada. My mom and a few friends raised some money and went and walk 5km in Red Deer. It was a beautiful day and a fabulous event.  Red Deer raised over $30,000 and Canada wide over $3,000,000 was raised! People with CF are not supposed to be together so I did not go to the walk. Plus, there is no way I would've been able to walk that far. Getting upstairs is challenging enough.

Mom and I were talking the other day about all the stuff I used to do. It is very sad but I can't even believe that I used to be able to play as many sports as I did. It's hard to think back to the days that I played baseball, basketball, and curled and was not completely breathless. I can not wait for the day that I can go out and do all the things I want to do.

I go back to CF Clinic on June 19 for a check-up and hopefully I will be well enough to stop the iv antibiotics for a little while. The transplant center also asked that I get scheduled for a few more tests again. It has been almost a year on the waiting list so a few tests need repeated. So along with having clinic I will be having blood gases, ECHO, and a bone density test. At least I know the transplant center has not forgotten about me. I got back up to see those doctors on June 24. It's always nice to go there and get some reassurance that they are still looking for lungs for me and they have not forgotten. 3 months is a long time to go without hearing anything from them at all. Last time I was there the doctor told me that I didn't have 2 years left to wait for lungs. It was hard to hear that, but I am so hopeful that my new lungs are on their way.

Some exciting news! Lorna, a fellow CFer and a lady who was in the 6 week program with me in Edmonton will be receiving her new lungs this Friday. She has been in the hospital since December and her mom and sister have courageously offered to each donate a lobe of their lungs to Lorna. Hoping and praying that everything goes smoothly for all 3 of them. I cannot wait for Lorna to wake up to a whole new life! Best of luck girl!

Also, congratulations to the Bachelor of Education - Middle Years Graduating Class of 2013 who will be attending convocation this Friday in Red Deer. You've all worked so hard and best of luck to all of you in your future careers as teachers. I wish I was up there with you all, but I know I will be there one day hopefully soon!

Being sick sure makes you appreciate all of the small things in life. I will not take one single breath for granted. Each day is a gift and I will take full advantage of it! I'm so ready for my new life to begin! I still have tons of stuff that I want to do!

A Long Overdue Update

Sorry for my lack of posts in the past months readers! I really have no excuse for it, other than I was being lazy. But I'm back at it.

Here it is May Long weekend already and still no lungs. This is getting ridiculous. Some days are really hard to remain positive and remember that they are on their way sometime. Yesterday I was playing with a magic eight ball and I asked it "Will I get lungs this weekend?" The response was "No". Then I thought, heck, I'm not giving up that easy and asked it "Will I get lungs soon?" Clear as anything it came back and said "yes". I know it seems silly, but even these simple, little things give me hope. I saw a shooting star a couple weeks ago and it made me stop and think, "I wonder if that is a symbol that lungs are soon on their way". Any little thing out of the ordinary renews my faith in this whole process.

I have no been up to Edmonton to talk to the transplant team since March. I am scheduled to go back down June 24. Its hard to go three months without hearing anything. I often wonder if they have forgotten about me. When I am feeling this way, there is always someone (like my mom) to remind me that they haven't forgotten and they are doing their best to find me a suitable donor.

I remained relatively stable in April, but in May I came down with headaches and chest pain again. I was admitted to the Foothills hospital on May 1 and put back on iv antibiotics. The antibiotics really kicked into high gear and I was only in hospital for 7 days. I came home and remained on home iv therapy for another week (until the nausea got to be such a pain I couldn't take it anymore). The week home was a pain in the butt too, my port was acting up! When the nurse came to re-access it before I left, no blood return. So the choice was either to stay in hospital another night, or be back at 8:30am the next morning. And you know me, missing my cat and all, convinced my mom to drive home! Good thing was I got to see the Fluff man, bad thing is up early again the next morning. We got to the hospital and got some drug put in the line to unblock it and then we had to sit there allllll day! Like 5 hours. It was a long 5 hours. When the guy went to re-check the port and confirm it was flowing nicely, it was still touch and go. It was very frustrating. We knew it was in the right spot and came home and used it. It worked fine and felt fine, until the cap started leaking. Nothing can ever be easy with me. All I could do was laugh. After a few trips to the Red Deer Hospital all was good and the port was fantastic! All week it worked perfectly for Mom and I. The following Wednesday we went back to clinic for a checkup. We even got to do some learning about port care and how to properly flush and lock it off. That's a load off my mind knowing that we are doing it the right way. I am feeling pretty good now that the iv's are stopped. Dealing with a few headaches and neck aches. At least I know what that is from though.....carrying my oxygen bag on my shoulder around the mall looking for a Mother's Day gift for my mom. And did I even find anything....No. Note to self: Next time I go to the mall alone, bring along my pull cart!                                                                                                                                                                              

Even one of these would've came in handy!

I finally decided on a gift card and flowers for Mother's Day just in case you were wondering!

We've also put a green light bulb in our outside light recently. We put it out for organ donor awareness week, but it has really grown on me and it has remained out there. The neighbors probably think we are on something when I turn on that fluorescent green bulb. But I personally like it. I'm actually hoping people come to the door to ask about it so I can further promote organ donation. 

Mom and Mike have gone camping up to my aunts this weekend so I'm home babysitting fluffy (cause he really needs babysat, right?). They left Thursday and by noon I was already bored and drove the hour to go for a visit. It is kind of lame this weekend because there are fire bans so we just kind of sit around and look

 at each other. 

Mom enjoying her rum!

Mike

Notice the lack of fire? Yeah me too!!! And the inability to roast marshmallows over an open fire is devastating. Thursday night I came back home and Friday I laid on the couch all day with a wicked headache. I was hoping to feel better for Saturday as they were having a small family get together out at my aunts. Well Friday I woke up, and felt much better so I drove the hour, again, to go see everyone. It was a long day and even by the end I was puking and tired. I decided then that it was time to go. By the way, good thing my mom was there to clean up after me! I got home late last night and here it is Sunday afternoon and I sit and relax once again. My life really does involve a lot of relaxing, eh? I think Tuesday I'll venture out and see what kind of trouble I can get into. I'm sure I'll need more junk food by then. 

Other things that have happened since my last post:

• Chance got his summer haircut (pics to follow)
• I've gotten to hang out with a nephew a few times
• Fluffy had a trip to the vet (Don't worry he is okay!)
• My sister got a new job doing something she enjoys way more!
• Some kid scratched my car with his bike handles (not impressed)
• My inside door handle got replaced under warranty (I know, you probably don't care, but it was a big day in my life!)
• The leaves are out and the grass is green
• I got my first sunburn and am currently peeling
• I had to go buy all new clothes because I am an impressive 125 pounds now
• The Pittsburgh Penguins are kicking butt!
• Mom got teased for having a handicapped sign in her Challenger
• Mike brother crashed his motorcycle and broke his neck in two places, his lower back and his pelvis. He is doing much better now. We did have some company while I was in the hospital though as his wife was with him the whole time. 
• My dad finished pool so my Thursday night beers are done. I guess I'll change to wing Wednesday!

Before

After

Just had to add a picture of my cute little nephew!
He's turning 1 soon!

A Rocky Mountain Excursion

Wednesday morning we were up early and started heading towards Banff. It was going to be a one night getaway for us. We loaded up the truck, not forgetting my chips, candy, and pop, and headed on our way. We took the long way out, going through Rocky Mountain House and Lake Louise. We stopped at Lake Louise and had $9.00 soup and $10.00 poutine (never eat the poutine there, not good!). Super expensive! We kept heading toward Banff after that taking 1a instead of the 1. Lots of beautiful scenery to look at. A few hours later we were in Banff and saw a deer trying to get into a hotel. It was quite the scene. The deer was right up at the door surrounded by people.
                                                                                                                                                               

The wood burning fireplace in our room

We went and checked into our hotel after that, The Buffalo Mountain Lodge.

It had a fancy outdoor hot tub too, which we didn't end up using. After checking out our hotel we got back in the truck and decided to drive up to the lake and see if we could find some sheep. Who goes to Banff and doesn't go sheep hunting, really?! 

On our way up to the lake we saw two sheep. One was standing on the side of the road and one was a little deeper in the trees. I decided to name the one closest to me Henry. Because every sheep needs a name, right?! He was a pretty mangy looking sheep but I liked him. I discreetly threw him some jelly beans, careful not to let the wildlife cops see me. Turns out Henry doesn't like jelly beans. We drove back up to the lake and then turned around and started back. Henry was still there on the way back so we stopped to take a few more pictures of him. He cute, ain't he? 

This is Henry

By this time it was 4:30 and we decided to head to downtown Banff and get ready for supper. We made reservations at the Grizzly House. Super cool fondue restaurant in Banff. We cooked on hot rocks instead of using oil. I decided I was going to buy dinner, so what does Mike do....He orders the most expensive thing on the menu. First we started with a cheese fondue, that was delicious! Then we had our meat portion and that was followed by the chocolate and fruit. 

So, more about Mike's dinner. He ordered the exotic dinner, which included: alligator, shark, ostrich, kangaroo, venison, bison, and frog legs. It looked nasty. Apparently alligator is disgusting and should be left in the swamp. The kangaroo was the best according to him. I think I'll stick to my chicken and beef. Mike wants to go kangaroo hunting now though. Here are a few pictures of our dinner. 

That is Mike's gross frog leg cooking!

"MMMM...Kangaroo"

Mom and I eating normal food!

The final bill for dinner was $230.00. I must have been feeling rich...or just stupid! After dinner we headed back to the hotel and relaxed by the fire and watched the Flames game. We were lucky enough to only experience a brief coughing session in the middle of the night. 

Mike decided it was time to get up at 7:00 and light a fire and wake us all up. Some of us like sleep you know! Today was the day to hit every candy store in Banff. First we went for breakfast and then walked up and down the streets a few time. That's right people, I walked around Banff and didn't pass out or die! I got lots of candy, about $40.00 worth (don't tell my doc though)! Then we stopped at Wild Bill's and had a beer sitting in the little balcony overlooking the street. It was a beautiful day out. After that I made the block and a half walk back to the truck we headed to Bow Falls to check it out. We took a few pictures and then started making our way home.

We saw a lot more sheep on the way home, but they were too far away to get pictures. We saw a lot of deer throughout our little excursion too. I was sure I would get called for transplant while we were gone because we didn't have very good cell service and even had to call and let them know where we were just in case. I never got called though. 

We got home about 3:30 and Mike decided we needed to start a fire so he could try out his new flat rocks (he stopped and grabbed a couple flat rocks on the way home to apparently try to cook on). He got the rocks super hot and decided to try and cook some shrimp. Using garlic butter on the rock he did his best and I guess they were pretty good. I want to see him try and cook a steak on his "rock". That was the end of our excursion. We relaxed for the rest of the night. 

The Day One Poke Turned Into Three

Day 1 of the port-o-cath adventure: Well, Thursday night it was that lovely time of the month again where my port needed its monthly injection of heparin to remain happy and drugged up.

As you can see it is ready to be drugged again!

Mom began the routine of setting up the sterile "force-field". After it was set up, I hopped up on the kitchen counter (the make-shift operating table) and laid down. I had great confidence in my mom and the fun began. 1,2,3 POKE! Try to pull back the plunger and no luck, zero blood. Mom began her usual cursing and wondering what to do. I said pull the damn thing out and try again (thinking she missed the target). She grabbed another needle and tried again and again no blood. More cursing followed. We then thought hell, what are we going to do? Mom thought she had missed twice, but it flushed like nobody's business, just no blood return. We decided I would come into the hospital tomorrow and one of her nurse friends would try a third time.

Day 2 of the port-o-cath adventure: I arrived at the hospital at around 10am (after I finally got the ice scraped off my window). And again I found myself laying on a hospital bed surrounded by a sterile force field. The nurse grabbed the needle and POKE! Still no blood return, but flushed easily. After that we learned that mom didn't actually miss, there must be something blocking the return of blood. (I think it was the port-o-cath rebelling because it hadn't received it's monthly drug yet).

We called the doc and I headed off to emergency to see if they could put some junk it the line to unblock it. After sitting there for about 2 hours, the goop was put in the line. I hung out for 2 hours and then the gunk was removed and the line was flushed. It was the moment of truth. Would there be blood return or not? I am happy to announce that there was blood return. The port monster received its drug and I am good to go for another month.

Here's to hoping it doesn't decide to block the blood return next month!

Map Reading 101

Well Wednesday started out with that devil of an alarm clock blaring in my ear again. Up and ready to go by 7:30am. Off to Calgary for another doctor's appointment. This was my monthly routine checkup with the CF team. After arriving we went to our little room and one by one the team started popping by. First the dietitian came by and she went to weigh me and I was reassured the scale in Edmonton wasn't lying when I was weighed there. I am still over 56kg. Its pretty impressive. She was impressed, and I'm only 3kg away from my goal weight. At this rate, I'll be there in the next month or two. Next the doc came in and caught up with us. We chatted about what has been going on and then the usual stuff (blood work numbers, weight, how I'm feeling, etc.). I also learned talking to him that I am a machine when it comes to taking drugs. I can handle everything they throw at me like a champ. I guess that's one thing I got going for me, lol. Then one by one the rest of the team came in (physio, psychiatrist, respiratory, and pharmacist).

One major realization was discovered though. After doing my first blows for my PFTs my numbers weren't great so my lovely respiratory tech decided to bring a new tactic in. Changing the screen from watching a line go across it to trying to extinguish a line of birthday candles. I have to say, I felt like I was 10 all over again doing PFTs with the little kid-like animation, but wow did it work! I was able to blow out all the candles and my numbers for my second and third tries were way better. My lung function was a strong 27%!!! Not getting any worse, but also not getting any better!

I'd like to see you blow all of these bad boys out with my dry, scarred up lungs!

We finished up at clinic at about 12:15pm and had to rush downtown for yet another appointment. This is where the title of this post really comes into play. We knew the address of the place we had to go and we got in the car and started in that direction. We missed the very first turn off but that was okay because we could take the next one with no problems. We got downtown and I swear those one-ways try to mess with you. Between the one-ways and yellow police tape blocking off an entire block we had to take a few detours. But finally we reached our destination (we thought). Mom thought wow, we got the last parking spot in this lot so after we flew in and parked, mom went to pay for parking. It was an unbelievable $7.00 an hour and mom decided to pay for 2 hours. We figured we only had about half a block to walk to reach our destination so we decided that I would just walk. We started walking and realized we were not in the right place at all. We started walking back to the car (and it wasn't warm out either!) and I looked up at the light standard and saw that we were on 1st street SW and we needed 1st street SE. We had a good laugh and got back in the car. So much for my mapping reading, eh? $14.00 for parking, all for nothing. After we realized our mistake we found the right place and the underground parkade. After paying another $4.00 for parking we headed upstairs for my last appointment.

And I must add that it was 2:30pm before we were finished all my appointment and finally headed for lunch!!! I was starving.

We headed straight out of town and went to Cross Iron Mills where we got a bite to eat and looked around the mall for an hour. I managed to buy a new sweater and a fancy dress to wear to an upcoming wedding. All in all it was a good day with a few laughs. But really, there are always a few laughs whenever we go anywhere!

Another Day, Another Doctor's Appointment

Yesterday I had to wake up way to early and head to Edmonton for a visit with the transplant doctors. Three months is a long time to go without seeing them. My alarm went off I thought it was the transplant doctor calling to say he had lungs for me. But no, I woke up and realized it was just my enemy telling me that it was time for me to get up and get ready to go. 

This thing is the devil!

I hopped out of bed, threw some makeup on, brushed my hair, and came upstairs. After my morning physio, I grabbed a banana and we were out the door by 6:30am. 

I don`t remember much of the drive, mainly because I fell asleep and finally came back to planet earth when we reached Leduc and the snow started. Oh great, more snow, more slippery roads. Good thing mom`s little car is a beast and can make it through anything! 

We continued fighting our way through traffic and after a long drive made it to the clinic by about 8:45am. 

Then the usual, I grabbed out my healthcare card and drivers license and waited to be greeted and registered by the much-to-chipper lady in the window. After that I took a seat, two minutes later we were taken back to the little room. 

Once there the pre-tranpslant nurse began another routine. Blood pressure, oxygen sats, weight. I pretty much know the drill now. I always try to remember what my weight was at my previous visit so I can compare. And I remembered it today, 51.9kg. I hopped up on the scale knowing that I had gained some weight, but not knowing how much. I almost fainted when I saw the number........56.5kg!!! I thought really!, this can`t be real, but I looked again and sure enough I had gained almost 5kg. Pretty impressive if I do say so myself. 

The doctor came in and started asking the same questions that I always get asked. How am I feeling. How am I holding up. Then he looked at my weight gain and seemed thoroughly impressed. It was definitely a positive in light of my upcoming transplant. He informed us that they have done 9 transplant since January. That`s pretty good. He knows that I have been waiting for 8 and a half months now and knows how hard it is to just sit around and wait. He told me that they have a soft spot for young women with Cystic Fibrosis and he knows I need a transplant as soon as possible. He told me they are doing everything they can to find me a donor. He was pretty confident that in the next year, they will find one, but he couldn`t guarantee anything. I`m hoping it is sooner rather than later since I am feeling good right now and think I would do great in terms of recovery. 

Mom and I had heard from a friend about a new machine they have in Edmonton that they are going to start using to assist in harvesting lungs and treating lungs that may need treated before being transplanted. The machine is from Transmedics and is called the Organ Care System. We asked the doctor a few questions about it and got some answers. Right now, they only accept about 50% of the lungs that are offered to them because of distance and condition of the lung. This machine will hopefully help raise that number to 80%. That would be awesome! More accepted lungs = Shorter waiting list! With this new machine, they will be able to travel further to get lungs (up to 24 hrs away) and treat lungs with heavy doses of antibiotics to get them in tip top shape before transplanting them. This is the first machine of its kind in Canada and Edmonton is trialing it right now. 

I was asked to take part in the trial of the new machine and of course I said yes! The trial will help to decide if the machine is of benefit to the transplant center. There is two parts to the trial. If lungs come in and I happen to be the recipient, there is a 50-50 chance that they will use the machine to bring the organs back. There is also a 50-50 chance that they will use standard procedure (packing the lungs on ice). The other part to the trial is if they find organs that are of my blood group and size they will use the machine to treat them if they don`t meet the healthy criteria set out by the transplant center. This could increase my chance of getting lungs faster! Click this link to learn more about this amazing new machine!

We left the clinic feeling upbeat. Plus, I was reassured that the team hasn`t forgotten about me and that as soon as lungs come in that match me, I will be getting the call!

After paying the million dollars for parking, we went over to the main hospital to visit some friends that are in. A couple people I met during my 6 week rehab program were in hospital so we stopped by for a quick visit. 

After that it was time to brave Edmonton`s snowy roads and head for home, but not before lunch! Mom and I decided to stop at Boston Pizza for french onion soup and pizza bread. We had a delicious lunch, paid for by me ( I know, impressive right), and then headed home. 

And again I don`t remember much of the drive because I counted sheep the entire way home. I guess my sleepless night was catching up to me! 

A Last Minute Adventure

Way to stop from being bored #134,000: Buy last minute tickets to the Brier in Edmonton for a Thursday afternoon!

Well it was quite the adventure. Mom and I bought tickets to the curling (I'd been watching it all week at home) and decided to head up to Edmonton. Curling started at 1:30 so we left home at 10:30. We drove through what seemed like knee deep pot holes in Edmonton to get to Rexall Place. We got to the arena at 12:30 and went in and got hot dogs for lunch. Then we got to our seats, ate, and had a beer before the curling started. 

After about 2 ends mom looked at me and said "I hope I turned the lights off in the car." I said I hope so too and we continued to watch curling. At about end 5 she was still worried about the lights and went to check.....they were on and the car was as dead as a door-nail.....GREAT!

So mom grabbed out her AMA card and called. They were there in great time to boost our car. By end 8 it was up and running again. Worst past was that mom had to leave it run for an hour so it wouldn't die again. But did she have a spare key? Nope! We learned that the old people at the Brier are all trustworthy people. Car was in the parking lot running, with the back door unlocked, and our car was not stolen when we went out after the game to leave. 

We stopped at Leduc for supper at Whitespot and then came home. It was a great day adventure that got us both out of the house for a little while. I was pretty tired when I got home though. I spent Friday laying on the couch catching up on my rest. 

No New News

Well another couple weeks have passed and I still have not heard anything. Well.....that't not exactly true. Yesterday the phone rang and when I picked it up and looked at the number it said "University Hospital" with the phone number. I'm telling you I almost had a heart attack and passed out. You want to know what it was.....some lady from the hospital calling to update my demographics. Really?!?! I get all psyched up for that! That's the second time this has happened to me. I swear they are just trying to mess with me!

I want to thank everyone that has posted a comment on my blog. I know there aren't many, but know that I read all of them.

I'm trying to think if anything else exciting has happened in the last two weeks. The element in our oven blew up a couple days ago, that's exciting right? We went for a drive to Wetaskiwin last week and looked through pawn shops. That wasn't my idea of a good shopping trip but it got me out of the house I guess. My stepdad is always looking for a good deal. Oh he also bought us lunch at a delicious pub! By the way I don't believe I have a picture of him in my blog so I better add one.

Here he is!

Two more weeks until I go see the doctors in Edmonton and I can ask them what is up and why they haven't found me any new windbags yet! Haha! I know they are doing everything they can to find some, but they are going through kind of a dry spell right now in terms of organ donations. I wrote a letter to the health minister to see about Alberta getting a donor registry like Ontario. That's got to help bring in more organs, right?

Well I'm off for more poking to be done to my poor, sad little veins!

Video

Pre-Transplant Video:

Doctor Appointment # 100000000000

I may have slightly over exaggerated when I chose a number for how many doctors appointments, but it does feel like I've had that many. Last week I went down to Calgary again for another check up.

Good news, my lungs have not gotten any worse in the last month. I'm pretty steady at 26%. Hopefully it stays that way until that much anticipated call comes in. And more good news, I have gained 3 pounds in 4 weeks. I guess eating like a pig and laying on the couch does have some benefit!

I better keep eating like a pig to keep this weight thing going up!

Not much else is new since my last post. I'm still trying my best to get some exercise using the wii fit and I'm doing pretty darn good. Every night that I am home I do about 15 minutes of exercising. But Thursdays are pool nights with my dad and I am their number one scorekeeper so I can't miss that (instead I miss exercising). I'm still getting lots more exercise than I was before. It's hard to do, but I try my best. 

These old nasty lungs are holding me back! I should be down there running laps and pumping iron, but instead I stretch and turn my body into a scarecrow (from all that yoga). 

I can't wait until I get new lungs so I can do all the things I can't do now. 

Like:

1. Singing in the car
2. Dancing
3. Walking around huge malls
4. Showering with no tubing
5. Being able to walk around my house without the pain of something being ripped off my face (Chance likes to step/walk/lay on my oxygen)
6. Having two free hands when I'm out and about (no more carrying oxygen)
7. Spend more that 30 seconds outside in the cold
8. Go jump in my car and take off (without planning how much oxygen I need)
9. Go back to University and finish my final year
10. Walk upstairs without dying from exhaustion when I get to the top

These are only a few of the numerous things that I can't do right now, but one day (hopefully soon) I'll be able to do them all! 

Wii Fit Anyone?!

Well, I didn't get out my wii fit after my last post, but on Wednesday I got it out and attempted to do some yoga. First thing I learned was that I hadn't used wii fit for 361 days, wow, what a slacker I am (don't worry I still got exercise). It asked me to take a body test before beginning. I though heck, lets do it. Let's see what my Wii fit age is. After a few balance exercises...BAM....it came on and told me my age was 30. Not bad for someone with lungs like me. I was still determined to improve that number. I also learned that I had gained 1.5 pounds since last time I used it. Now the real work began.....


I started with a breathing exercise......You are supposed to breath along with the trainer, but with these lungs it took me about 4 breaths to equal 1 of his. So really, I did more deep breathing than him. Deep breathing for me is taking a breath, haha.

Picture this....me trying to slow down my breathing and follow the trainer and almost passing out!

 Next I tried a few other exercises. The one that killed me was some sort of sitting chair. My thighs were really feeling the burn. I didn't even make it through the whole exercise without quitting. Wii gave me a score of zero and called me a yoga novice. Guess I better get my butt down there more often and practice up.

. This is the pose they tried to get me to hold for like 30 seconds...are you kidding me?!

I did a few other poses and by the time I had done 12 minutes I was pooped. 

Note to self: Remember to turn up oxygen before exercising!

I called it a night and went back to the couch to continue being lazy and eating junk food. 

I even impressed myself when I went down for a second night in a row and tried again. This time I cranked the oxygen up and felt much better. Even more impressive, after yet another body test, my wii fit age was only 22. I'm not sure how but my impressive work the night before must have paid off....or it was just pure luck! Even more more impressive was that I had gained 2.5 pounds since the night before. I told mom that if I kept that up I'd be a porker in no time. Up to 118 pounds!!! I guess it does pay to sit on the couch all day and eat. Oh and the exercise is pumping my muscles back up!! 

After 14 minutes of exercise I was done for the night. I tried to improve on what I had done the previous night. I have to tell ya, some of those exercises look deadly. Take this one for example.....

.....who in their right mind can do this and not fall over!

I guess that will be my next goal. Do this horrifying yoga pose without falling over!

The doctor better be impressed with my awesome effort at some sort of exercise when I see him next week!!!