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!!!!
