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!