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!

Eva

An inspiration to so many people, especially those of us with CF. Through her documentary and her blog, she has taught us about CF, organ donation, and most importantly, about living life to the fullest.

Thank you for sharing your life with us.

Breathe easy Eva.

Heading Home!

I am heading home tomorrow. I will finish off my IVs at home and head back to clinic on Wednesday for follow-up. It's always exciting to know that I'm going to be discharged. I can't wait to live with my husband again, see my dog and return to my routine at home. I never sleep much at the hospital either, so I need to catch up!

My sister left on a month-long trip yesterday. I've got to admit that I'm a little surprised that she decided to travel half-way across the world while I'm on the transplant list. I don't even know if that was much of a factor, but I wasn't about to interfere with her decision to travel. I think she didn't like leaving with me in the hospital, but I don't know if she's considered that I might have new lungs the next time I see her. She says she'll fly home if I get the call... but the logistics of that are overwhelming. No point worrying about it though.

Here We Go Again

Over the last two weeks I have experienced a slow progression that's landed me back in the hospital. I have been very SOB and I've been having chest/lung pain. That's unusual for me, so I've been pretty concerned. We haven't figured it all out yet, but we've been crossing off possible causes. High Co2? Nope, my blood gas results are similar to last time. Collapsed lobe? Nope, my xray looks about the same. Heart problems? Nope, things are good in that department too. I am on IV Tobra and Cefepime and I hope it'll kick in soon.

In other hospital news, I was moved from my private room to a semi-private this afternoon. Ugh. Of course, my roommate is all kinds of crazy and I have NO sympathy for people who wreck their lungs by smoking. I'll save you the rant, but the smell of the cigarette smoke hanging in the air is an issue. I have no luck with roommates. Or with sharing bathrooms with five other people.

Enough about me already.

I am thrilled to hear all of the recent news in the CF blog community... CFers getting new lungs, CFers having dry runs that provide a new perspective and energy to continue waiting, CFers responding to anti-rejection meds, and CFers being listed at excellent tx centres with short wait lists. Every story is exciting and encouraging. I love all of the good news!

I also heard some good news from my exercise group at my tx centre. I heard that two of them have their new lungs! I am thrilled for them. Things are looking up!