Breathing Deeply: My Life With Cystic Fibrosis

Forget the old addage "red sky at night, sailor's delight; red sky in morning, sailor's warning!" I wish there was some sort of compass that could help me navigate through the choppy waters of arthritis. For me the pain doesn't just "come and go." It comes and stays. Granted, the doctors wrote me some pretty great prescriptions when they discharged me. You should have seen the size of the bag Brad brought into the house when he got home.

I consider myself blessed because somehow the pain has disappeared from my hands and fingers. Isn't the Now if only we could get a handle on this itchiness. It definitely feels like a "serum sickness" type of issue as opposed to an infection all its own. My doc seemed a bit stumped about it during my last appointment. He said he'd track down the best of the best to see about getting me added to their clientele.

As I'm sitting here typing I've been watching the rabbits run around. They sure are gleeful! It's amazing to me that God can put so much energy into a body that small. I just put a blanket on the floor for them to play with. Coral was bunching and smooshing and rearranging it to suit her needs. I wish I had my camera because Coral is 90% of the way tucked in under the blanket. All that's showing are her hind quarters. She's resting with her chin down on her front paws. It's quite adorable.

Speaking of a rest, I think it's about time for my afternoon nap.

Oh, I wrote a few more health articles in case you're interested:

How to Protect Yourself from Tuberculosis Infection

Do Certain Foods Cause Irritated Bowel Syndrome?

Gallstones and their Treatment

The Symptoms of Hemolytic-uremic Syndrome (HUS)

Diagnosing a Fungal Infection

How is IBS Diagnosed?

Acute Bronchitis Treatment

What Causes Fecal Incontinence?

Barrett's Esophagus

I can't believe it's Thursday already. On the one hand I feel like I just got home from the hospital (which was Monday) but then on the other hand it feels like more than 4 days have passed. I think part of what's going on is that everything really "clicked" together well for us on Monday. Usually getting released from the hospital is an all-day event. True to form my nurse woke me up at the unholy hour of 5:30 to draw some blood and tell me to take one of my oral antibiotics. I was just about to lie back against the pillows when one of the resident doctors came in and told me she was working on my release papers and that they hoped to get me out of there by noon. I wasn't going to hold my breath.

One of the trickiest parts of getting "sprung" is that there are SO MANY medications that need to be picked up at the pharmacy before we leave. In times past the doctor would fax the order down to the pharmacy, except he'd do it mere minutes before I walked out the door. This typically results in us having to wait around an hour or so for everything to be filled--that is, if they even have everything I'm supposed to get. More often than not, we leave the pharmacy with 80% of the meds I need. This time is was incredible. Not only was I able to physically walk my prescriptions down to the pharmacy myself, but they were READY when Brad went to get them. Oh, and yes, we were out of there by noon!

I came home to a beautifully cleaned house and a pair of happy bunnies. Good job, Brad! I love it when you show me you love me by doing those sorts of things. I also appreciate when you tell me to "rest and don't move" from the dent I've made in the couch.

So, that was the beginning of the week. It's now Thursday and I've had a great day. I did a bit of straightening up in the guest room, went to the gym, and had time to write a couple of new health articles. This morning I had my last appointment with Dr. Moutier (not a CF doc). I'm going to miss her. She was always so good at helping me navigate the choppy waters of bipolar disorder. It was great to end on a positive note with her. Brad came with me to the appointment. I like that he does that. He means so much to me; I love knowing that all facets of my life are looked upon with total and complete acceptance by my husband. I used to be annoyingly independent with all my CF stuff, but over time Brad has helped me understand that he loves me enough to want to bear the burden of the crappy stuff with me. What a guy!

After the appointment with Dr. M, I headed over the CF office to pick up some long term disability forms that they had filled out for me. It was oddly freeing to read on that sheet of paper that my doc doesn't want me to return to work. I know I've mentioned that issue before, but I'm finally at peace with it. I've gotten a taste of what it's like to feel well, keep house and keep my hubby happy and still have leftover energy during the day. Granted, naps are now a permanent part of my afternoon, but even so, I'm not exhausted all the time. God is good. Life is good. Brad is good. All is right with the world!

Oh! Something else cool happened today. Genentech (the makers of Pulmozyme) sent out its press release thing about me. I'm the Hero of Hope for the month of January. It's truly an honor and I'm blessed to know that God is working through me to minister to the CF community. Here's a link to the write-up and the podcast. (Beware, the sound quality of the podcasted interview isn't so hot.)

HEROES of HOPE: Lauren's Story

Today has been a nice restful day, even though I'm in a unit where they take my vital signs every 4 hours. (Even throughout the night! Gah!) I slept better last night than I had in a couple days, and was able to take a couple of cat naps during the day too. The best part of all this is that I actually feel pretty darn good. Yesterday I had my pulmonary function test and amazingly I got 2.02L on my FEV1. I've never gotten quite that high in the hospital before. Usually what happens is I get really close, like 1.95 or something, and the doctor sends me home on IVs hoping that I'll gain those last few cc's of lung power on my own.

This time I insisted that I not be sent home just yet. That was a very difficult decision because it meant I'd be missing Ava and Julia's first birthday party. I'll also have to miss out on my sister's wedding reception/brunch. Both of those are the type of things that only happen once, and it's frustrating to me that CF forces me to bail out on them. Still, I know I made the right choice and will be experiencing greater health for it in the long run.

Thank you everyone who has been praying for us these last couple weeks. We've definitely felt it.

Today was an interesting day for me here at the hospital. I underwent a procedure called "antibiotic desensitization." What it does is trick the body into thinking that it's no longer allergic to an antibiotic. In my case, the antibiotic is Septra.

Here's how the day unfolded:

10 a.m. I was told that they found a bed for me down in the Intermediate Medical Unit (IMU) down on the second floor. That's where there are more nurses and more monitors to keep a close eye on a person's vital signs.

11 a.m. Packed up my gear and waited to be taken down to the IMU.

12 p.m. Got checked into the new room and was immediately started on a small oral suspension of Septra. From that point on I was given a slightly stronger dose every half hour. I was hooked up to a machine that kept track of my heart rate, breathing rate, blood pressure and oxygen saturation. A nurse was at my bedside the entire time just in case I started to have an adverse reaction to the antibiotic.

4 p.m. Received the final dose of the desensitization process. I managed to make it through with only a small degree of itchiness on my palms and my neck. They gave me benadryl for it and that worked fine.

Now that I'm officially desensitized, I will be receiving Septra intravenously in a fairly strong dose. This will be substituted for one of the other antibiotics I'm currently taking. Tonight I'll spend the night in the IMU being monitored by nurses.

It was a good day!

Over the weekend I was feeling lousy enough to call my clinic and leave a message asking to come in for an appointment. Monday they called me back and said that clinic was already over-booked and I should go to the emergency room. So I packed a bag and drove to the hospital. The ER was over-crowded with people. The triage nurse said that this is what a typical Monday looks like around there. They gave me a face mask and one of those barf buckets and there I sat trying to blend into the furniture until they called my name.

Two hours later they finally took me back to get my vitals, then they put me right back out into the waiting room. Another hour later they took me back into an exam "room" where they had me put on a gown (brrrrr!) and accessed my port. They were in contact with my CF doc, so they were able to get me started on some IV antibiotics right away and take blood for labwork.

Another few hours passed and they told me I was going to be admitted. Here's the catch...the hospital had no empty beds. (Gee, where have I heard that before?) So in the meantime, I had to spend the night on a gurney in some abandoned hallway. Technically I was in a "private room" but it was in the middle of nowhere with no way to call the nurse, no clock, and basically no security of any type. I slept with the light on for that fact alone. It was one uncomfortable night, that's for sure.

My arthritis pain is pretty much constant right now, and they're being great about making sure I have pain medication. It's making me sleep a lot, but frankly I'd rather be out of it right now. It's making the days go by more quickly.

Yesterday was my younger sister's wedding. Despite the rain and the cold, it was a beautiful day! Brad and I drove up on Friday to stay at my parents' house. Dana and Tom got married at Tom's parents' house in Yucaipa. It was a small, simple ceremony, which suited the couple just fine. I don't think it could have been more lovely or meaningful had it been a gigantic wedding like mine and Brad's.

My sister was gorgeous. I had the privilege of being there to see her transform from "just woke up" to "bride to be." I've always thought my sister was pretty, but to see her as a bride was...well, there's just something beautiful about a bride, especially one who has a relationship with Christ. The symbolism of such a thing really makes me suck in a breath and contemplate the magnitude of it.

Of course I teared up several times throughout the day. The first was when the hair stylist put the veil on her. Then again when I saw her for the first time in her wedding dress. I really lost it during the part when the pastor was talking about how someday they'd be telling their grandkids about the day they got married.

So as of yesterday Brad and I have a new brother-in-law and a new nephew! It is our hope and prayer that this newly formed family will serve God as their Lord and Savior, and will love each other with the kind of love that Christ demonstrated for us.

Congratulations Dana and Tom!