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!