Christmas

The fun never stops!

Five days before Christmas I talked to the doctor in Calgary and finally explained about the nausea I'd been having and we agreed to stop my iv antibiotics for a week so that I could enjoy Christmas and New Years. After stopping the iv's I felt great! I got to pig out at Christmas and not feel sick! My lungs remained stable and here it is January 8 and the iv's have not been restarted as of yet. I'm hoping I can remain stable and be off of them for a while.

On the 23rd we had Christmas out at my dads house. All of my stepbrothers and their wives/girlfriends were there. We had a big fondue with everyone. It was delicious. I was the first one to start eating and the last to finish. I even out-ate my stepbrothers. We opened gifts with my dad and everyone and then I headed home to relax before we left to be with family on December 24.

My Christmas was great. Spent it at my aunt's house near Rimbey. The whole family came out and we all spent the night and then opened gifts in the morning. Some of the family left after opening gifts to go to the other side of their families. Stacey went with my dad and Roxanne to Edmonton to have dinner with Roxanne's family. I didn't go as it was going to be a late night and lots of driving. I stayed and had dinner with my mom at my aunts house. It was a delicious feast! It was an extremely long day for me and I was exhausted by the time we got home. And what did we come home to.....no power. That was great, haha. We lit candles and sat under blankets. Good thing my portable oxygen was charged up! We were lucky that it was only out for about 20 minutes. I couldn't help but to feel bad for the people in town who were trying to cook their turkeys and then boom, no power!

On the 26th, Mike's family came up and we had Christmas with them. All of his kids were here and baby Mya. His mom and dad also came up from Crossfield. Mom cooked a ham and we had a great dinner and opened gifts with all of them.

It was a busy 4 days of Christmas celebrations for me and I was very tired after all of that, but it was well worth it. My New Years was much more low-key. I spent it at home with my mom and Mike. My aunt and uncle came over and we had appetizers for supper with them and then the 4 of them went in the hot tub and I read my book on the couch. It wasn't a late night for me either. I didn't even make it until midnight, I think I was in bed at 10:30.

Things have been going really well for me so far. I'm hoping to get that call in early 2013 so I can get back on my feet and be back to school to finish my final year of teaching. Hopefully September 2014 will be the year I go back and finish my degree.

A good friend of mine who I met while in the 6 week rehab program in Edmonton has been quite sick. She spent Christmas in the hospital, but was lucky to get a pass to be with her family. She also has Cystic Fibrosis. She has been quite encouraging to me and helped me keep my spirits up. I don't know how she does it, but she is very positive. A couple of days ago, the doctor came into her hospital room and told her that they had lungs for her! She was very excited! She was to go into surgery at 2am. But at 10:30pm she found out that the lungs were full of pneumonia and it was a dry run. My heart was broken for her. She needs new lungs more than anything. I found out that she will most likely be in the hospital now until the new lungs come. I pray that they come soon and that she will start feeling better soon!

I will add some pictures of my Christmas's soon!! Stay tuned for more....

Well, I'd say I'm a little behind!

Well it has definitely been a while since I have posted anything. Summer flew by and by the time I knew it, it was September. Not being able to go back to school with my friends was pretty bitter sweet but I know that I will be able to finish once I am healthy again. From August through to November I was very stable and doing great. I was able to get out and do the things I wanted to do by myself. In September I had to go for a test in Edmonton to check my esophagus and for any acid reflux as those can potentially cause problems after transplant. I had to get a tube inserted in my nose and come home with it for 24 hours. I was sure glad to get that thing out the next day. I also saw the doctors again in Edmonton for a checkup and they were happy with how everything was going.

The day before my 21st birthday was the day of another check up in Calgary at the Foothills. I knew I was doing well, but was also worried I would be admitted because I always seem to be in the hospital that time of year. Luck was on my side, and I was not admitted. I had a great birthday at home and felt pretty good.

At the beginning of November I went for another check up in Calgary and things were still looking good. My lung function was at 33% and was remaining stable. But all the good news had to end when I caught a cold the middle of November. It started with a head cold and moved right into my lungs. By the 3rd week in November I was having a really hard time breathing and was admitted to the Foothills Hospital in Calgary once again. The plan was to get a picc line put in and start iv antibiotics again. Nothing can be easy though, right? They used ultrasound on my arm to try and find a vein to put the picc line in and I didn't have any so we had to move on to plan B. They needed to start the antibiotics so the picc people were able to get a normal iv in my arm using ultrasound. The plan was to pump me full of fluids and hope my veins got better so the picc could be inserted the next day. But.....nope, didn't work. Still no veins. Now on to plan C. A port o cath insertion. This was planned for a week after I was admitted so I was hoping my iv would last so I wouldn't have to be poked over and over again. Luckily it lasted and the next Monday I went in for the port. The port is a small device implanted in my chest, where a catheter makes a tunnel up the muscle in my neck and back down in a large vein close to my heart. To use the port a small needle is poked through my skin and into a cork-like device under my skin. Then a small needle stays in the port while it is being used, but the needle needs to be changed once a week.I didn't really know what to expect with the insertion, but I thought they would give me some sedation, but boy was I wrong. I was wide awake the whole time. They gave me a tiny bit of meds to take the edge off and then some painkillers. It took about 45 minutes to put in and wow was it sore after it was all said and done. Hot compresses and fentanyl were my best friend for a couple days and then I switched to tylenol. After about 2 weeks it started feeling better and my neck and chest was no longer sore. I find the port a little more uncomfortable than a picc line but in the long run it will be good. My lung function dropped significantly after I got sick as well. In hospital they did more lung functions tests and found that they had dropped to 26% and it is really hard to get it back. I stayed in hospital for 2 weeks and am now home on all of the same antibiotics. My mom is great at home. Its nice to have a nurse here. She is able to give me all of my iv antibiotics and help me out a lot. She is a god send. The meds do make me quite nauseated and I am trying my best to keep my weight up. The doctor said at least 6 weeks of home iv therapy and then we will see how things are. I see him again January 9. I'm hoping he stops the iv's so I can get back to eating and gaining weight.

I find myself more short a breath now and even have a hard time climbing the stairs in my house. Going out in the cold weather is nearly impossible, but my mom helps me out a lot. It is nice to get out for a little bit, but I also get tired really quick. I have had a few down days wondering if lungs will ever come and wishing I could just be "normal" again. I'd love to get these lungs and get on with my life....finish school, get a job, etc.

Yesterday I had another appointment in Edmonton to see the transplant doctors again. After talking to the doctor even he told me I was ready for lungs. He made me feel like the next set of lungs that come in that are my size, blood group, and fit with my antibodies they are mine. I'm hoping it is not too much longer, but there needs to be more donors. My lung function is deteriorating quickly and it would be such a great Christmas gift to receive new lungs!!!

We are heading up to my auntie Lynn's house for Christmas Eve and morning. It should be a good time and hopefully I am feeling well.

I will post more updates as soon as anything changes!!!!

Finally another update!!

Well I see the last time I posted anything was week 4. The time just flew! I completed the 6 weeks and am listed as a number 2 on the list now which is highest priority. I could get the call any day now. My physical therapist also taught me a home program in week 5 so that I can continue doing all of the exercises at home. Now to get a treadmill. We met a lot of really nice people in Edmonton who are waiting for or who have already had transplants. I will miss a lot of them, but definitely keep in contact with them. Here it is August 9th now and I've been home for nearly 2 weeks. It is good to be home though! The week after I got home my family from Ontario all arrived so I have been keeping busy with them. My aunts and uncle flew home today, but my grandma and grandpa are still here. It is really nice to see them all again. I have a routine all set at home too. I get up and do all of my physio and then exercises and then I have the rest of the day to myself to go and do what I want. I've done lots of shopping! My dad had his 50th birthday so that was a busy weekend and things are just starting to settle down now. I also went to Calgary the Monday after we got home from Edmonton for a check up with the docs down there. Everything is looking good and they took my picc line out for now! It's sooo nice to have that thing out!! Hopefully I can stay this healthy and stable until I am called for my transplant.

Below are some pictures that we took at the gym.

Below are all of the parking passes that we had to take every time we went into the parkade. I think we were there enough. $23.00 a day is enough too!! Thank god for monthly passes.

Our Little Home

Week 4

Well here it is half way through week 4 and things are still going good. Monday was an exciting morning at clinic. They have finally activated me on the list as a level 1. The doctor said there isnt much difference between a 1 and a 2 because when lungs come in that match me, I will get the call. Now the waiting begins. We've talked to a lot of people that have already had lung transplants and the average wait time seemed to be between 9 months and a year. So I'm not getting to anxious yet. Now I just have to remember to keep my phone on me. Today we had a nutrition class. Still need to keep eating a lot a gaining weight as it will make the surgery and recovery that much easier. The funny part about nutrition is that the class was between 10:30 and 11:15, right after I finished my work out at the gym and I was starving. I had snacks with me in case my blood sugar dropped I'd have something to eat. Guess who ate my snack as we were sitting in nutrition and I was getting a low blood sugar.....MOM!!! Gee thanks! But we made it back to the hotel and I had my regualar, a grilled ham and cheese. Then I had my hour nap and we headed on to West Ed to get out for the day. We stopped for some wings and bought a few things and now we are back at the hotel settling in for our nightly routines. No more classes this week, but we have a couple next week. I will update the blog again then. SIGN YOUR DONOR CARDS!!!!!

Just an update From Last Week

Well the end of last week did not go as planned. Wednesday night I was feeling nauseated and Gravol was not working so I tried the new medicine that the doctor in Calgary gave me to try. I ended up having a terrible reaction to it and being sick for 6 days. I took it Wednesday night and by Thursday morning I hadnt slept at all and felt terrible with restlessness and and increased heart rate. I did not even think that I could even get to the car so mom called paramedics so they could come assess me. They came to the hotel room and checked me out and my vitals were all okay so they left and mom got me to the car and we headed to the hospital to see the doctors. He suggested I try taking Benedryl to see if that would help. I took 50mg of that and laid in bed at the hotel all day Thursday. I missed going to the gym and doing my exercises on Thursday and Friday. Friday I was still feeling bad. I did not want to take anything else so I loaded up on water and tried to flush the med out of my system. Mom and Mike took off Friday afternoon for the long weekend on the motorcycle and I was home to look after the pets. I still did not feel good Saturday, Sunday, or Monday. I had a pretty quiet weekend hoping that my anxiety from the med would go away and I would be back to normal. Now, here it is Tuesday and I'm beginning to feel normal again. If I can call myself "normal." HAHA!!! I'm still a little anxious and restless, but am 100% better than I was. I went to the gym this morning and did all of my exercises and even kicked it up a notch on the treadmill. We did not have an extra classes today. Tomorrow we have a family support meeting with our entire group. Then Thursday and Friday there are no classes and we will just being going to the gym to work out. I'm going to be buff by the time I get home. It takes me over an hour and a half to do all of my strengthing exercises now. I'm planning to continue to go to the gym in Penhold when I get home to keep my strength. It will make the recovery after transplant a lot easier. Big storm at home today. Stacey says the parking lot at her work is flooded and it has been hailing. It looks like the storm is heading our way too. Could be a loud night with thunder out there. Hopefully I get a full nights sleep tonight. More updates to come.....Stay tuned!

Muttart Conservatory Visit

Pictures from the Muttart Conservatory