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!

Putting the Fun in Fundraising

To have a little fun and raise some funds, my husband started a lung transplant lottery. Perhaps it's a little morbid, but we thought a little pool to guess the date "the twins" arrive would be entertaining. Other girls get to have baby showers and baby pools, but I have my lung transplant. It's in the form of a 50/50 draw, and I'm happy to report that dates are sold out until September. Our friends and family have been happy to play along and support us. This will help to pay for our big ticket items: renting a place in Edmonton and the new medical equipment that I'll need.

I visited my office last week to catch up with all of my co-workers. I had no idea that they had done some fundraising of their own! They had held a lunch fundraiser in February for me. I was shocked when they handed me a thick envelope full of money! I was so touched, and I was totally blown away. It's amazing how thoughtful and kind people are. What a wonderful gift. I am so lucky to work with such a great group of people.

It's an awesome feeling to know that so many people are thinking of me!

CF Statistics

I have been keeping up with my exercise and crossing things off of my 'To Do Before Transplant' list. My husband has been helping me to take care of the things that require shopping. I really appreciate it because it takes so much effort to get in and out of the car with my O2. I am now committed to using an EverGo personal concentrator, which I made official by finally returning my regulator. I was offered the EverGo by my oxygen company on a trial basis. I have been using it since January and it's great, particularly when someone carries it for me. When I'm alone I use the cart, but it's heavy to lift and not ideal for the melting snow and puddles. It has it's benefits though- three hours of O2 and it can be recharged in the car or any wall outlet.

I am proud of myself for keeping up with my workouts, but it has been more challenging on the treadmill this week. I am more SOB and my sats are dropping more than I've ever seen before. I bought a handy little pulse oximeter (for only $50 online) and it's been helpful to check where I'm at.

Now for the interesting stuff...

I recently saw that the median age for CFers in Canada is up to 47.7 (as of 2007). The data has been compiled recently and it looks like the increase could be attributed to:

1. increase in the number of individuals diagnosed with CF as adults and have a mild gene mutation (although this appears not likely the cause)
2. increase in the number of lung transplants
3. better nutrition throughout entire life

I haven't seen much celebration over this yet, but perhaps the information is very new still. If you'd like to read more on this, the report can be found at http://www.cysticfibrosis.ca/assets/files/pdf/CPDR_ReportE.pdf .

Back to Clinic

I have had several doctor appointments since I've been back. I saw an ENT who suggested I start using sinus rinses. I used to rinse my sinuses a couple of years ago, but didn't find it productive. I am trying the NeilMed product as opposed to my old school 60cc syringe and homemade solution. It looks like this will be a permanent part of my routine, as after tx I will need to keep my nasty CF bugs in my sinuses and out of my new lungs.

I also had a pleasant clinic visit this week. It was nice to see the whole crew again and update them on my progress. My weight continues to be right on target and my PFTs are looking pretty good right now with an FEV1 of 32%. I think I can contribute my good numbers to recent IVs and all this exercise! It's so obvious that a 32% today looks nothing like a 32% a year or two ago. Despite the numbers being the same, I am in a very different place.

I will also be switching up my antibiotic routine. As much fun as it was to try something new, I wasn't impressed with Azli. I love the e-flow, but I can do without all of the throat irritation and unproductive coughing I get with Azli. I didn't find it very effective overall. So I'm back on my old Tobi schedule- two weeks on, two weeks off. During the off weeks I'll be on cipro, which I haven't done on a regular schedule for years. We'll see how it works!

As I was leaving the clinic, I couldn't help but think about how short my visit was! It's nice to go home afterward and not be admitted! Let's keep it way!

Back to Normal

I am back home now and back to normal life. My definition of normal, that is. Now I'm just waiting for the phone call to change my life! It feels good to be at home with my dog and my bed and my family and friends.

I have been doing my home exercise program all week. It's going pretty well. It takes a good two hours, but it seems like it takes all day. I need to rest so much between exercises that time flies. Like I said, I am happy to have a home gym. Some days my husband and I work out together, and it's nice to have company. My husband put a better tv in front of the treadmill as well. It definitely makes working out easier! I have been glued to the Olympics for a solid week now!

I really wanted to go to the Olympics back when the tickets first went on sale in the lottery. We almost bought tickets. We love Vancouver and we've gone out there every year since we got married. Now I can say that it's good we didn't buy tickets or make arrangements to be in Vancouver. There is no way I could leave now that I'm on the list, and I admit it wouldn't be as enjoyable with the way I feel- unable to walk very far and with a limited supply of O2. I still feel like I'm missing out though. At least the tv coverage is good.

I still try to go out and do errands or see friends, but it is still exhausting. I thought I might see an improvement after my exercise program, but I think it's about the same. I feel pretty good overall and I am keeping busy. I feel like there is so much to do before I get the call! From tidying around the house to packing a bag for the call, there's lots to organize. I am eager to push through and get as many things done as possible. I want to be ready when I get the call. Checking those little things off my list will help!

One More To Go!

Tomorrow is my last day in the gym. It's hard to believe that the six weeks are up already. I am excited to finish the program and return to my normal life, but I'm wondering if I'm ready. I feel like it's graduation day and they're sending me into the real world for the first time. I have focused on exercise for six weeks. I haven't done much in the way of socializing or being in public. I feel so sheltered!

My physio has customized a home exercise program for me. I got the chance to review and practice it already. I have decided to do my work outs at home. There are pros and cons to the home gym vs. public gym. At home, I love how little effort it takes to get to the basement where we have our equipment, but I admit that I tend to take longer breaks because no one's counting! I should put a clock on the wall. I find at a weight room, there are other people watching so I tend to push myself more.

At home we have a treadmill, a bench and some free weights. We are also going to purchase a bosu ball (for my lunges and squats) and a roller (for my back exercises). It works out well because both my husband and I can use this equipment.

I will finish my IV meds tomorrow! I am looking forward to being free of the extra tube and bag with my pump. This has been my longest course of IVs to date- 2 and a half weeks (18 days).

Overall, I'm really happy with the program and my progress. I feel stronger and I can walk with less effort. I also feel like I have had a chance to work through more of my tx issues. I have seen the ICU and know exactly what to expect at the gym. I have met some wonderful people and heard their inspiring stories.

I can't believe there's only one more day to go!