Breathing Deeply: My Life With Cystic Fibrosis

My FEV1 on Tuesday was pretty stellar, so the doctors decided that I was ready to come home. So far it's going well with the home IVs. I'm only on 2 of them, which is familiar. Brad's the one who's not feeling so great. He's got a stuffy nose, so we're keeping our distance from each other.

I'm glad to be home. It's always a challenge to get back into a normal routine after being in the hospital. The side effects from the meds are a little bothersome as well. I'm on colymycin, so my mouth, tongue, and fingertips are quite numb. I'm glad I'll be off work for a little while, because I'm having a hard time walking in a straight line. That's another side effect of the meds. Yuck.

Thanks everyone for the prayers and well wishes while I was in the hospital. I really appreciate your support.

There's still no bed for me at the hospital, so I'm still waiting here at home.

I'm beyond frustrated about this. This has ALWAYS been the way it takes for me to get admitted and I simply don't understand it. I know for a fact that if I were to walk up to the 3rd floor of that hospital right now I would count a minimum of 6 empty beds.

I'm very curious to know if this is standard operating procedure for the hospital in general, or if it's just the CF patients that get sidelined like this. What ever happened to "first do no harm?" When a doctor says I need to be hospitalized, I was under the impression that those were his ORDERS...not a mere recommendation.

Then they tell me "well, you can always go to the ER and wait there for a bed." Sure I'll do that. I'd love to sit in a crowded ER with little kids with the flu, adults who have fallen off ladders, and nurses who wouldn't know how to spell the initials of CF if I told them it started with a C.

Yes I'm whining. Yes I'm crabby about it. This sort of baloney makes it tempting to want to slam my arm in the car door just so I'll have a more "significant' medical issue. When I finally do come to the point in my life where I'm nearing the end, you can bet I won't even bother with the hospital. I refuse to wait around as though I'm anticipating a pizza delivery. That's another reason why I don't ever want a transplant. Waiting for a human being to decide whether I can be given a part of what God has created (i.e., life) is not something I can do; so I won't.

Is my life somehow worth less because I have CF? Does the hospital figure that I've got a fatal disease so medical intervention is just prolonging the inevitable? If so, that's righteously messed up.

I had a doctor appointment on Wednesday night that didn't go very well. I've had a bit of a cough and was running a fever about a week ago, so I figured I needed to check in with the doctor. My PFTs showed that I lost slightly more than .5L, which put me quite a bit below my baseline.

In other words, I'm being admitted to the hospital.

The doctor things that maybe I picked up a simple bug and since we're catching it early I won't have to be in for very long. Of course, I'm not going to hold him to that prediction. There's always a catch or some unforeseen issue when it comes to a hospitalization.

I'll try to keep everyone updated, but I don't know how good of an Internet connection I'll have, if I even have one at all.

Today was cleaning lady day. I came home and the place looked great. I figured with everything in order I'd take a nice nap on the couch. It gets nice and dark in the loft, so it's easy to take a midday nap up there. I didn't sleep much last night so I was looking forward to some moment of silent repose. My eyes were closed for all of two minutes when I heard THUMP!

Thump? Must have been the squeegee falling down in the shower. No big deal. I closed my eyes and settled back toward the head-dent in the pillow. THUMP!

Alright, that does it. What's that noise? I heard a little tinkling of a bell and yet another THUMP! emanated from Gimli's cage. He had food, water a clean blankie and fresh litter so I couldn't imagine what the problem might be. By the time I heard the 5th THUMP! I decided his feet must be hurting him. Time to trim those nails.

I don't mind cutting his nails. I've done it on several occasions before and never hit the quick and made him bleed.

Today that became past tense. Oh boy did I do him a whopper. Lest you think it was a provoked assault because he thumped while I was taking a nap, let me remind you how much I love this dumb bunny.

I hit it on the 4th nail. I never saw blood stream out quite that fast before (unless of course it was my own blood being drawn back from my portacath, but that's a different matter entirely.) Bright red and mildly disgusting, rabbit blood pooled into the bathroom sink. I reached for the styptic powder but Gimli managed to kick that off the counter and spill it as he tried to scramble away. And scramble he did.

He ran 3 bloody-footed laps around the bathroom before he nudged open the door and made a break for it.

"DON'T BLEED ON MY CARPET!" I yelled, upsetting him even further. I was plenty upset myself by this time.

You know those Family Circus cartoons where they have the dotted line showing the paths of all the kids? That's what the loft looked like. Only instead of dotted lines there were little pink paw prints criss-crossing what must have seemed like a very large room to a small frightened rabbit.

Gimli's back in his cage nursing his wounds and I get the lovely task of cleaning up the crime scene before my husband gets home. Only 13 more days until the cleaning lady comes again. I should have it back in shape by then.

Over the course of the last year I've become a pet person. I worry about whether my little fuzzy bunny is getting enough to eat, getting enough play time and whether he seems content and happy. Last night I was practically in tears over Gimli's well-being. He hadn't touched his hay all day, and his water dish was still completely full when I returned from work. Also, I had changed his litter pan that morning and there were no "cocoa puffs" as we call them in it at the end of the day. Not a good sign for a bunny.

The nurturing animal lover in me took over. I immediately got out the stethoscope and listened to Gimli's tummy. No sounds. Then I took his temperature and no, that didn't involve coaxing him to hold the thermometer under his little tongue. His temp was only 99.1. Rabbits are supposed to be between 101 and 103. His ears felt too cool to me and he was lethargic. I wrapped him in a warm kitchen towel and held him on my lap in a position so that I could rub his tummy to help move along anything that might be stuck in his gut.

3 hours and no change. He didn't even fight against having the towel around his ears. Normally he hates being confined in any way. He also wouldn't eat a carrot even though there were plenty of them sitting right in front of his little nose. I was heartbroken. I worried that the end might be near for my little fur ball.

Finally, after what seemed like far too long, his intestine and his colon must have come to some sort of agreement and had negotiated a release. He slipped out one little poo and looked like he immediately felt relieved.

Gimli is feeling and looking much better today. He's eating again and is up to his old tricks, and has even learned a new one! The video below isn't the best quality, but you can still see what's going on. Gimli has learned to jump over a pole with relatively little prompting from me. At first he used to just walk back and forth underneath it. He typically jumps over about 3 times before he demands a treat for his performance.

I've finally been feeling well enough AND had the energy enough to go up to see my friend Kelly and hold her precious twin girls. I've been 3 times now, and each time I'm just more in awe of Kelly's mothering instinct and her care for her babies. I love that she lets me be a part of that. Diapering, feeding and holding Julia and Ava is filling a place in my heart that I wasn't sure could be filled.

Today the most startling realization was that the experience isn't bittersweet. It's just plain sweet! When I'm holding Ava and smooching her adorable round cheeks, I'm not thinking "if only I could have this of my own." I find myself thinking "thank you Kelly for letting me be here." When I hear Julia's squeaking little "I need some attention" cry coming over the airwaves of the baby monitor, I congratulate myself on being a good Auntie who can already tell the girls' cries apart.

I know I don't get to participate in the true glory of what it's like to be a sleep-deprived new mom, but really, I don't mind that. I think that having our own kids would have truly been too exhausting for us.

Could we have made it work? Yes, I think so. But I'm glad we're not trying to.

Would we have been good parents? I like to believe so. But parenting 24/7 is not a calling that Brad and I share with couples our age.

I haven't seen the movie 27 Dresses, but I get the basic premise of "always a bridesmaid never a bride." Perhaps our story is more along the lines of "Always an Auntie, never a mom;" We could call it 27 nieces! It's a role I'm honored and delighted to fill.

Kelly, if you're reading this, THANK YOU and Rob again for the honor of being little Ava's namesake. It's a privilege to be a part of your growing family's life.

This week has been BUSY. Almost a little too busy, but thankfully today I'll have a chance for a serious nap.

At work I finally got my new furniture, and it's so functional. I love how much workspace I have now on my desk. It's a wall unit, and it has two desk lamps attached to it, which is GREAT. My office has motion sensing lights, so sometimes if I'm too engrossed in a project and don't move for 10 minutes or so, the lights go off! Now I won't have to worry about that happening.

My current project is a challenge. It's the first one I've ever had to write on my own from start to finish. You'd think that for me as a writer that wouldn't be a big deal. Well, let me just say that creative writing is a far cry from technical writing. There's not a whole lot of room for creative word-smithing when you're trying to explain the regulations regarding portable diesel engines with greater than 50 brake horsepower. (You don't have to pretend to know what I'm talking about.) The material is dry as toast. I'm learning a lot though.

CF Fundraising is getting very interesting! I decided that I'm going to involve my co-workers. Our department has recently formed something of a workplace community of sorts. The purpose is to engage us together as a group so that we get to know each other better. I figured since congress just passed the GINA (Genetic Information Non-Discrimination Act) I don't have to worry about "outting" myself. Several of my coworkers already know I have CF, so I'm not worried about it. I'm hoping that I can do a lot to promote Cystic Fibrosis Awareness Month.

Speaking of raising funds, my latest total is $6,990! I threw another batch of letters in the mail on Tuesday, so we shall see what that brings. I keep raising the bar on my goal. I'm aiming for $9000 now. I'm pretty confident that I'll hit it. To those of you who regularly read my blog and have donated to the Cystic Fibrosis Foundation THANK YOU!!

I'm so thankful for all the generous donors who are helping make a tremendous, positive difference for CF patients like myself.

Tomorrow I'm going with my sister to help her try on wedding dresses. Weeeeee! I just know I'm going to cry at some point. It's exciting to think about her getting married. I'm so glad she picked a nice cool month (January) for her wedding date. Brad and I got married in July and boy oh boy were we roasting. It was NOT a day for pantyhose, that's for sure.
On the health front my FEV1 is back up thanks to the antibiotics and an extra treatment of HS each day. I don't have to go back to the CF Clinic for another month, so I've still got time to improve even more.