Breathing Deeply: My Life With Cystic Fibrosis

It's been nearly 3 weeks since I was admitted to the hospital. It's been quite a ride. I've had some really great nurses and one or two duds. Thankfully I've been getting all my meds on time, with the exception of some forgotten insulin one afternoon. (But that's another story completely.)

By the way, Hi Kelly, it's Tuesday!

I saw my CF doc today and he said he's going to change up my antibiotics a bit and send me home on Thursday on home IVs. He asked more than once if we'd be able to handle the schedule, and I repeatedly told him that we've done crazier stuff in the past. The major thing that will be different this time is that I'll be coming home not only on home infusion therapy , but I'll also be needing oxygen round the clock. On the one hand I'm glad that such things are available; on the other, it's a little scary to think that I've reached the point of needing that. I'm choosing to be thankful that so many great things are available to help me be in the best health possible. I've been told there are even some oxygen cylinders that are small enough to put in a backpack type thing that I can take with me to the gym.

Getting back to the gym is very important to me. I need to try to preserve what little lung capacity I have left. That will involve some cardio and a lot of upper body stretching to make myself nice and limber. That should help with my lung function, even if just a little bit. I think exercising will also do some good for keeping my blood sugars under control. I hate being diabetic while on corticosteroids. It sucks out loud.

Another interesting part of my day was when I went downstairs for a patty melt. Mmmmmmm. The grill here in the cafeteria is pretty tasty. (Yes Auntie, I know you love hearing about made-to-order foods...haha!) Anywho, I bumped into...well, not literally because that would have been a bad thing...another CFer. It was a girl I had met awhile back when we were both in the waiting room of the ER. She's a good 10 years older than I am and truth be told, looks like CF has really worn her out. I chatted a bit with her husband while we were waiting for our food.

It's always a good feeling when I can make a connection like that. It makes me feel like I'm less alone in fighting this stupid disease. Don't get me wrong, my husband and family are awesome supports, but they are just one step removed from the "getting it" part of things. It's nice to know people who are fighting the same stuff I am. This girl, Leslie is her name, also hates looking like a patient when she's here. She and I were both wearing cute coordinating jammies that our families had brought us. We were each dragging an IV pole, and we both had on our masks to keep us from from spreading our CF cooties around. *note to those who are new to CF, CF itself is not contagious, but the bugs we culture in our sputum can be from CF patient to CF patient.

Well, that's about it for now. I'm sure I'll have more to blog about in the days and weeks to come. Be on the lookout for photos of my bunnies. I sure miss those little fuzzy butts!

Six years ago today Brad and I embarked on our marital journey together. Hand in hand we spoke our vows to one another, our hearts beating wildly at the anticipation of married life. We trembled with joy at the gift that God had given us--the gift of our relationship. We couldn't imagine then how fulfilling and wonderful that would truly be.

Six years ago the day was a flourished frenzy of photos and friends. Everything was beautiful. Despite the thick, choking heat of the day we managed to stay cool and collected. Even now I love looking back at our wedding album. The portraits are stunning and the candid photos my Aunt Mary Beth and Uncle Mike took throughout the day help complete the story.

I am so blessed to have Brad in my life. He's truly the love of my life and the best part of me. He takes care of me no matter what is going on, and he always has a way of putting me at peace when I'm on edge. He takes our vows seriously, as he's proven time and again whenever I've been in the hospital. Because of the way he treats me, it's easy to love, honor and obey him as my spiritual leader and companion for life. I can't imagine any other life.
Tonight we may be celebrating our 6th anniversary in the hospital again, but I'm confident that Brad will find a way to make it beautiful and special. He has a real knack for things like that. I regret that I only have hugs and kisses to give him and not a beautifully written greeting card or similar gift. I hope he knows how much I love him, even without the fuss and frills. So here's to 6 years of wedded bliss! May they continue all the more!

I Love You, Brad!

Just because I'm in the hospital doesn't mean I can't have my very own little celebration for the 4th. Tonight I ordered cheeseburgers and ice cream for dinner, topped it off with a cold ginger ale and half a pint of milk. Mmmmm, tasty. I don't know if I'll be able to see any good fireworks from my window, but that's okay. I usually associate this holiday with fun family time, and since I got some of that today with Brad and my Dad's visit I'm a happy camper.

I really like when my dad comes to visit. I guess I'll always be daddy's girl. Actually, it's nice to have a mature, adult relationship with each of my parents. My dad always has a way of imparting some "life knowledge" when we have a conversation. My mom is the care taking type, always bringing or sending along a "care package" of sorts when I'm in the hospital. Tonight that included a fresh nightie and some lipstick to help me feel more like a girl. Brad came this afternoon as well as is typical for him. He helped Dad with some computer stuff and then after Dad left he spent a few hours with me just hanging out talking and sharing a snack.

The weird part of my day was when my port-a-cath seemingly sprung a leak. It happened prior to my afternoon dose of CPT (chest physiotherapy.) I looked down to move my tubes out of the way so that the respiratory technician could pound on my back and I noticed quite a pool of blood under the dressing. Yikes! We don't know what started it off, but the blood was coming from somewhere. It wasn't getting into the line itself, so all we really needed was a dressing change and not a whole new needle. What a freak thing to happen!

This afternoon I managed to get a nice nap. It was the sort where you're sleeping rather lightly but still are able to awake feeling rested. It was just a pinch warm in my room which is probably what facilitated such an event. Of course, the pain medication I'm on makes me a bit drowsy as well. I'm thankful for naps. They help make the time pass more quickly. The days still stretch a bit too long and the nights are too, but for the most part I'm doing fine and have had a decent experience so far.

I'm looking forward to Tuesday which is when we will repeat my pulmonary function tests (aka PFTs) to see how well I'm progressing. All the docs seem to think we're working more on an infection now and not so much waiting for my rib cage to heal. That may be what brought all this on, but I no longer think it's the root cause of what we're fighting against. Please continue to pray that I can regain lung function and that I'll be able to go for longer walks with less of a need for supplemental oxygen.

Over the last couple years that I've been in and out of the hospital, I've struggled to make use of their limited Internet connection. Imagine the scene: hooked up to oxygen and an IV pole, I precariously balance my lap top on any surface that seems sturdy and attempt to browse the web. Sometimes I would have tremendous luck and would be able to send and retrieve emails, do some work, and maybe even download a song or two.