Breathing Deeply: My Life With Cystic Fibrosis

Today is the day we're having the Halloween party over in Second Life. If you haven't had a chance to check out Boomer Island and the CF University there, this is an excellent opportunity to do so. The University has been totally transformed into a carnival-type atmosphere complete with decorations and rides.

The party starts at 4:00pm SL time. If you're new to Second Life and would like some help getting your avatar put together and dressed for the party, now's the time to sign up with secondlife.com. I'm more than happy to help you out getting your free account started.

So what can you expect to find over at Boomer Island today?

-Pumpkin treasure hunt (Begins at 5:00)
-Rides
-New friends
-opportunities to chat
-prizes
-Haunted House

Plus, if you come in a costume you'll receive $25L and be entered for a chance to win an Amazon.com gift certificate.


How do you get there? First you need to sign up for a free account with Secondlife.com. After you've created your avatar (your character for SL) click on the blue button at the bottom of your screen that says "Map". Enter the words "Boomer Island" in the search box then click "Teleport." That will take you to the main area of the CF University campus. I'll be there waiting to help you find a costume or to just help you out as you get started.

Hope to see you there!

This weekend was pretty decent. Brad and I spent lots of time together just vegetating in front of the TV and enjoying one another's company. It's so nice to have my freedom back. I'm sleeping well considering how long it had been since I'd slept in my own bed. My energy level is great too. The only thing I'm having trouble with is my blood sugars. I haven't really been able to reign that in yet. It'll get there though.

In other news, I just couldn't stand looking at Gimli's empty cage, so we took a trip to the animal shelter. We adopted an adorable pair of twin bunnies. They're not very socialized yet, but they seem plenty happy as they bound around the loft together leaping and twisting mid-air. (That's always a sign of a happy bunny.) We figure that by having a bonded pair, they won't get lonely. Their names are Coral and Sandy. I'll post pictures eventually.

I've been noticing all day how good it feels to BREATHE. I'm so grateful for every breath and praise God for how he sustains me. I'm even more grateful for every breath that come easily. To have the energy and ability to do stuff around the house, take care of some errands and still do the fun things I want (like play with bunnies!) without huffing and puffing and getting short of breath is a tremendous feeling. This is probably the most successful clean-out I've had in a couple of years. I hope it lasts all winter and into the summer. That would be phenomenal.

I'm always surprised by how abnormal and out of place I feel once I'm out of the hospital. I expect to settle right back into a "regular" routine, but so often that's more easily said than done. This weekend I'm mostly just lounging around. Sleeping in my own bed again next to Brad is WONDERFUL. Being able to have access to food at any hour of the day is something of a thrill too. If it weren't for the fact that I still have a few days left on the IV antibiotics, I'd feel downright normal.

I feel well. One of the first things I noticed last night while falling asleep was that breathing felt natural and easy. No more shallow breaths or nighttime oxygen (or daytime oxygen for that matter!) I could lie flat and not get a headache. I didn't wake up periodically throughout the night with tons of sinus pain and pressure. The sinus surgery must have been a huge success. I can taste more foods. I can smell more scents (which is good and bad.) One of the scents I noticed first was that Brad had switched deodorant. It was way too musky so I made him go back to the one he used before. Ahhhh...familiarity.

My chest feels quite open, and my FEV1 continues to climb. I'm quite curious what it will be by the time I'm back at the doctor for a follow-up. There's still just a little bit of what I call "lung mud" left in there. That's the gunk that's usually the deepest and nastiest and takes the longest to loosen up. It's not uncommon for us CFers to cough up the grossest stuff at the END of a clean out or tuneup, rather than the beginning.

Even being on steroids is going well. My blood sugars haven't been too wacky which is good news. My poor pancreas almost always takes a brutal beating from the prednisone. So far that doesn't seem to be happening. I don't even have moon face! I do have that classic "kangaroo pouch" though from the steroids. I've decided I'm not going to be embarrassed or get bent out of shape just because my stomach isn't flat at the moment and might not be for months. The fact is, I'm finally healthy and feeling well. My body shape will come to reflect that more accurately soon enough. For now though, it's back to the "big jeans" and elastic pants.

I just want to say thank you so much to all of you who read my blog and who have been keeping up with Brad for the updates. Your support, encouragement and mostly your prayers mean so much to me. In what could be such an isolating world of CF, I've got all of you on my team and that is more of a blessing than I deserve.

Today I finally got to come home. We had a LONG delay at the hospital (as usual) getting the right prescriptions written and filled. I hate checking out on Fridays because no one wants to work all the way until 5pm--they all want to cut out by 2:00 because they have other things to do. We're still waiting for the home health care people (Coram again) to drop of supplies and meds. Let's hope for their sake that they can do that without screwing up because today is NOT the day to mess with my emotions.

Speaking of emotions, I'm sorry to say that our beloved little friend Gimli died in my lap tonight. I came home to find him barely breathing, his food and water dish untouched. Apparently he got a hairball which quickly progressed to a bowel obstruction and he just couldn't rebound. It just so happened that where we were sitting on the floor we were leaning up against a rainbow on the wall that was reflecting from our bedroom. Gimli shuddered a few times, gave that last little "rabbit wail" and then it was over.

We laid him to rest in little knitted blanket that I had worked on the last couple days. (Kelly, I can now relate to how you feel about losing your cat not to mention your blanket). Gimli will be much missed.

Lauren is coming home today! She's doing really well, but she'll be on IVs at home until next Wednesday so she gets 4 full weeks in.

At yesterday's PFTs her FEV1 was up a little bit and her FVC was up by a lot.

Labels: health

Hi everyone... it's Brad again.

I just realized that I've been putting updates on the forums Lauren visits, but I hadn't posted to this blog to let you know how she's doing.

She's (finally!) getting sinus surgery today, at 6:10pm (PDT, of course). Her CF doctor is optimistic that, once her sinuses are clear, we'll be able to deal with her lungs in a much more lasting way.

My mom is coming down to wait through the surgery with me. Please keep Lauren in your prayers!

UPDATE: The surgery went GREAT. The doctor told us that everything turned out well, and Lauren was up and talking (and asking for company in the recovery room) not long after he was done. I stayed around until she was ready to fall asleep... it's been a long day for us both, and I'm about ready to do the same.

Thanks for all your support and prayers, everyone!

I finally found a place in the hospital where I can sort of get a connection to the Internet. It's a very, very slow connection, but it will have to do.

I'm going crazy here in the hospital. Part of that I'm sure is because of the prednisone. It makes me want to peel my skin off just to have something to do! The last three nights have been better for sleep though, which is good.

Part of what makes this stay so annoying is that this time being in isolation really does feel like isolation. My television has 100 channels of all the same program. I don't know how that happened, but it's definitely not fun. I'm so glad that my mom is letting me borrow their little DVD player.

Yesterday the time actually went by pretty quickly. My dad came for a few hours. When he left Brad showed up. About 5 minutes after Brad got here my cousin Jared (aka "Big Jared" for those who know my family) came by too. We had fun talking and laughing together. Saturday had also been a good day for visitors. Kelly and John stopped by and they didn't come empty handed! They brought some ice cream contraband...mmmm...and the first two books of the C.S. Lewis space trilogy. My attention span is pretty short, so getting through a C.S. Lewis book is taking some effort. Lots of big words.

Tonight my in-laws will probably stop by for awhile. It will be nice to see them. Even though they haven't a lot of time to adjust to having a family member with CF, they are doing a good job of being supportive. They ask the right questions and are understanding of my limitations. I sometimes forget how helpless caregivers and people in my support system must feel to watch me go through these hospital visits.

That's about it for now. I'll try to update again as I'm able. Thanks for your continued prayers. They are appreciated.

I've been in the hospital for just over a week now, which means I've had two sets of lung function tests to measure my progress. Things seem to be heading in the right direction. I'm not thrilled that I'm on prednisone, since it's making my blood sugars go crazy, but it's not as though that's something we haven't dealt with before. I had PFTs today which demonstrated some good progress. Nothing major, but enough of an improvement that I probably won't need to have my antibiotics changed. I'm still far below my baseline, but I hope I won't stay in this range for much longer. Things seem to be loosening up and coming up and out. Like I said, good progress.

Having Katrina here is making things a bit more tolerable for me. We've talked on the phone a few times and each time I hang up I feel so thankful that there's someone who knows what I'm going through. (She sounds pretty darn good by the way.)

Brad has been doing a great job of keeping me contented and peaceful. He's done some very thoughtful things for me while I've been here and for that I'm so thankful. The other day he even surprised me by bringing my CD player and my current favorite CD, along with one that he made especially for me. Awwwww...isn't he great?

There's no word on how long I'll be here. I don't dare ask either. I have a feeling it might be a lengthy visit. We seem to have the pain under control finally, which is good. Now we just need to find a way to keep the prednisone from keeping me awake all night.

That's it for now. Thank you all so much for your prayers and warm thoughts. Daily I'm thankful for the support system I have in my husband, family and online CF community. You guys are all awesome.

More to come in a few days...that is, if I can snag an Internet connection again.