Just Another Day

I decided to pass on the anti-anxiety drug for now. I am trying something else for two weeks until I go back to clinic. This is an inhaled med that's usually used in COPD to decrease gas trapping. I don't think it's well studied in CF, but if it reduces the gas trapping in my lungs it could make a difference in how I feel. I have tried this drug once in the past and didn't notice any difference, but I'm willing to give it another go.

It's been snowing like crazy here for a couple of days, so I haven't been out much. Even my dog is pretending that he doesn't need to go outside! I think I need to get out for a change of scenery this evening when my husband gets home. My days are so routine that they're getting boring.

I have lots of things that I'd like to do around the house, but I have little energy for anything. By the time I complete my morning routine it's 2pm and time for lunch. I used to get a couple of things done after lunch, but not lately. I don't even have the motivation to do the things I enjoy, like reading or scrapbooking. I am exhausted and ready to crash mid-afternoon. Working out has also become more difficult since I am very SOB. Hopefully things will start to improve!

Clinic

My sister-in-law took me to clinic today as my husband is super busy today at work. It was great to have her company. It's funny that she's helped me in the gym, get my port accessed, etc. while I was in Edmonton for my six-week physio program, but she hasn't been to my regular clinic yet. So today was a first for us.

I went into clinic today because I have been really short of breath. I'm SOB all of the time, even at rest. It's exhausting. I have been off IVs less than three weeks and I feel like I've gone downhill. I'm not coughing more or coughing up more, which makes my shortness of breath a bit mysterious. I wasn't expecting to be admitted today, but I was thinking maybe some home IVs would help or something different... I don't know. Maybe I could try some inhaled steroids or maybe there's something else out there.

I wasn't expecting what I was given, that's for sure. It was a prescription for an anti-anxiety drug. Don't get me wrong, I believe that drugs can help control symptoms and I'm not adverse to trying something new if there's a reason. But I don't feel like anxiety is my problem, I am short of breath! All I wanted to know is if this is my new normal, and it sounds like it is. It just seems like I got to this new point very quickly and I'd like to try to reverse it before I accept it!

I need to think this over and decide what I'm going to do. I am leaning towards trying to deal with this on my own before using the anti-anxiety meds. I've already made it this far without them!

This is not what I was expecting today, that's for sure! The first thing I did when I got home was repack my transplant bag for good measure!

In the News!

My speech went very well at the media event for National Organ and Tissue Donor Awareness Week. I found it exhausting of course, but so worth it! I chose to sit while giving my speech, but it was still difficult to talk for four minutes. At least I didn't have to stop for a crazy coughing fit. I recognized a couple of faces in the crowd, but unfortunately the lung tx doctors were either stuck in clinic or stuck in Europe with no flight home.

After my speech I was interviewed and had several people form the crowd come up to me with encouragement, which is sweet. I felt really good about how things went.

I saw clips from the event aired on three different channels. The CBC Edmonton Evening News actually showed part of my speech, my interview and repeated my donor awareness message!!! I am thrilled!

If you'd like to view it, please skip ahead to the Health section at 24:25 mins:
http://www.cbc.ca/video/#/News/Local_News/Edmonton/ID=1474135146

Happy National Organ and Tissue Donor Awareness Week

My husband and I are back in Edmonton today. I have been asked to share my story at a media event at U of A Hospital for National Organ and Tissue Donor Awareness Week. This week has special importance to me now! I am so flattered to be asked to participate, and I will gladly fill my obligation to spread awareness. There are four of us that were asked to speak (two pre- as well as two post-transplant people). I did a test run today and will practice my speech more this evening. I want to get it just right so that people are compelled to think about becoming an organ donor! I will share any coverage that comes from it!

We finally have some super sunny warm weather, which feels great! I have dug out my capris and shorts which is a nice change. At least a couple of things still fit... I have gained 10kg since two summers ago. I know that it's a good thing!

And it's great to hear that someone else got their new lungs! Go Jess!

First Follow-Up Appointment

I had my first follow-up appointment with my transplant doctors today. It's hard to believe that my six-week program finished two months ago! We didn't think I'd need this appointment, but no lungs yet. It was nice to chat with the staff and visit some of the post-transplant people we know in the gym. Apparently my centre has done 11 lung transplants this year, so there were three that we didn't hear about. It sounds like I'm second or third in line for my blood type and size- so about the same as before.

All of last week I did my full workout routine, which felt great after being sick. I am already back up to 30 minutes on the treadmill. My motivation to exercise and stay fit for transplant has been really good. This is the most motivated I've ever been to work out!

I ended my IVs on Wednesday as planned at clinic. I also got to do this liver scan as part of a study, and my liver would be considered normal (not hard and damaged). That was good news.

Now that I have more energy than usual, I think I'm going to try to meet up with some friends this week. I would love to go for a sushi lunch (before it's forbidden) downtown with a friend , plus catch up with some friends on mat leave and lunch with my sister-in-law. That sounds ambitious but I'll try!

Transplant on My Mind

I had a nice Easter weekend and got to spend time with our family. My husband single-handedly prepared an amazing meal and got the house ready for company. I am finally starting to feel a little better everyday, which is a relief. I was supposed to complete my home IVs last Wednesday, but I didn't feel any better. Instead, we switched the Cefepime to Ceftaz for another week, keeping Tobra the same. I'm due back at clinic on Wednesday and I'm anxious to get rid of the IVs and port needle. The hospital switched needle brands and this kind has no cushion. It just sticks out and has gone interstitial once already.

I have been on the list now for nearly three months. The pre-transplant exercise program ended two months ago already. It's hard to believe that I've been home for that long. When I first came home all I could think about was tx. After some time, I thought about it less. Now it's back full force and I think about it constantly. I am having more anxiety, particularly at night when I should be sleeping. I know that my family is having a hard time waiting this long. Even though I think about tx all the time, I'm okay with the waiting process. This is all I have going on right now. Everyone else has contingency plans around work, activities, travel and childcare due to my tx, and I think it's adding up. It's hard to be ready to spring into action for an extended period of time.

Well, I'm just going to continue to get organized and exercise while I wait for The Call. It makes me feel better. I have been getting out of the house less, and I'm rarely alone when I do. My little routine at home is keeping me going!