Breathing Deeply: My Life With Cystic Fibrosis

If anybody's still checking this page, I wanted to point you to a post I wrote on my own blog about an award that was presented recently in Lauren's memory:

Remembering Lauren

-Brad

After 29 years of battling CF, Lauren passed away yesterday afternoon (November 3).

She was a strong woman who, unfortunately, lived in a weak body.

-Brad

P.S. In lieu of flowers, please make a donation to the Cystic Fibrosis Foundation in her name:
http://www.cff.org/great_strides/LaurenBeyenhof

Lauren got a quick sedation break this morning, so I was able to say "hi" and feel her squeeze my hand. She's getting better slowly but surely, though the c.diff is still present and she's still on the vent. We still have a long way to go...

-Brad

Hi all,

Lauren has been in the ICU for a week now, and this morning her blood CO2 levels were so bad that she had to be intubated. It's definitely helping, but of course such a drastic step is evidence that she's not doing well.

She's also got c.diff, and (though the UCSD center has accepted her) she's not yet on the transplant list because there are too many other things going on right now.

Please keep her/us in your prayers.

-Brad

Labels: caregivers, chronic illness, health

Hi all,

I just wanted to let you know that Lauren ended up in the hospital again. We were actually in the process of transplant evaluation (for double-lung), and during our meeting with one of the nurse coordinators of the transplant program Lauren de-saturated pretty badly; we stopped the meeting and rushed her downstairs to the ER.

That was a really scary day. She's doing a lot better now, but she's still in the Critical Care Unit. Also, we're in a different hospital than usual since our meeting with the transplant team was in a different place than the CF clinic.

Her oxygen saturation is doing well (with 7 LPM through an oxymizer), though it was also discovered that she has pneumonia in her right lung. They've also suspended the transplant evaluation until she's feeling better.

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.

The last couple days I've been sleeping on and off as the pain medication takes hold. I didn't know I could hurt this much and NOT have it be post-surgical pain. Every movement I make somehow manages to concentrate itself around my sore rib. It's so bad that I'm not doing my vest right now, which is a bummer because that's such a critical part of my health care. Fortunately I do have a hand-held percussion massager that I can use on my good side to keep things opened up. I try to keep my coughing at a minimum, but that's hard too. Good thing I have so many sets of pajamas! I think I'll be living in them for awhile while I heal.

On the positive side of my day, today I got a new iPhone. It's currently being held captive by my husband, but I'm looking forward to playing with it as soon as he gets home. It probably does things well above and beyond what I need it to do, but it was fun to splurge on a personal item. Mine is white and Brad's is black.

This weekend, Saturday actually, was quite a busy one. Every five years for my grandparents' anniversary, our whole family gets together to take a portrait. This year the designated "call time" was 8:00 am. Brad and I had driven up the night before and stayed at a Holiday Inn. It turned out my cousin and her family were staying there too. It was fun to see them for a few minutes before all the busyness of the photo session.



Since we all need to color-coordinate for the photo, preparing for this event generally involves a shopping trip or two to find the right clothes in the right colors and the right style. This year we were all pretty casual. The colors were blue and brown, which meant jeans and khakis for the most part. My mom took a few photos in addition to what the photographer took.

After the photo session we all ate brunch together at Grandpa and Grandma's house. It wasn't anything fancy. Mostly a lot of quiche-like foods and some muffins. Following brunch we had some down time. Brad and I went back to the hotel for a couple hours. He used the time to play with his computer (hooray for free wi-fi at hotels) and I took the opportunity to get in a nap. I knew I was going to be crabby if I didn't get a few more winks. I had a rough night of sleep the night before because my rib was really aching. I couldn't sleep on my right side, which is my usual side.

After my nap it was time to head over to Auntie's house for more festivities. This time it was a baby shower for Dana. I still can't really wrap my head around the fact that my little sis is pregnant. She makes it look easy. For a gift I made a crib blankie that had monkies on it and some green and brown coordinating fabrics for the border. It's one of the best blankies I've made so far and I was proud to give it to her.

Once the shower was over it was time to go back to the hotel to pick up Brad so we could drive home. On the way we stopped at Mandarin Garden for dinner. I wanted Brad to experience their food since I'd already had it and enjoyed it a few times. He agreed that it was every bit as good as Peking Palace, perhaps even more so. Unfortunately it's all the way up in Mira Mesa, so we can't really make it "our place." It's a good half hour drive from home. As an alternative, we've decided that Mandarin Garden will be our new place to stop when we're driving back through the area.

This morning I woke up in quite a bit more pain than yesterday (remember my aching rib?) I was absolutely convinced that it was broken so I hauled myself to Urgent Care to get it checked out. The good news is that it's not really broken, but I do have a large what's called a "bone bruise" on that spot. The bad news is, just as if it had been broken, I'm looking at a 4 to 6 week recovery time. The Urgent Care doc got in touch with my CF doc and they decided that what I needed was an incentive spirometer and a good strong dose of pain meds. I was already on pain meds for arthritis, but that wasn't helping my rib so they prescribed something stronger. Looks like I'll be taking it easy at the gym for the next month. Bummer. Just when things were getting good.

Last night I had my first CF Clinic visit since my hospitalization in April. I have been feeling so good lately that I wasn't too worried about it. Mostly I was curious about how my lung function test would turn out. I was so glad to see my FEV1 up over 1.8L. The last time my LFTs were done I only got 1.54L. For those of you who keep track of percentages and not volume, that means my lungs had been functioning at a mere 47% but has now jumped up to 56%. I'm really pleased with that number. I'm hoping that if I keep up with my gym routine I can bring that number even higher.

It was good news all around last night. The dietitian was happy with my weight since my BMI is now at 21, which means I'm normal for my height. Studies have shown that the closer a CFer's BMI is to 22, the better lung function they have. I'm happy with where I'm at. All of the folks from the clinic who came to check on me commented on how good I looked. I should say so! The last time they saw me I was on oxygen. I don't even need that at night anymore. I've come a long way in just two months. I'm hoping I can continue to do this well for quite awhile yet.

*Changing the subject*

Last night Brad and I discovered that my aquarium was leaking. Ugh. The carpet around the area was damp so I tried sopping it up with towels. Fortunately the majority of the water was absorbed by a blanket I had kept in the aquarium cabinet (which is open on the back). Even so, dealing with the moisture has not been fun. I spent some time last night on my hands and knees with a hair dryer trying to spot treat the carpet.

I found the source of the problem. Fortunately the structural integrity of the aquarium itself is fine. It's the filter unit that was causing the problem. It kept spilling up over the top of the filter. I ended up getting a new filtration system for the aquarium and ditching the old one. Still the problem of the damp carpet remained, so I headed over to Home Depot to invest in a small wet/dry shop vac.

Once I got the shop vac put together it was back to my hands and knees to work on the carpet. I sucked up as much moisture as possible by using the vacuum and following behind it with the hair dryer. That seemed to work great until I blew a fuse from having so much power being used at once. Luckily I was able to easily find the right breaker switch in the garage to get things up and running again.

A few weeks ago I returned to the gym for the first time in months. I was a little apprehensive about how well I'd be able to keep up, not to mention what sort of routine I'd be able to keep. When I started my FEV1 was holding steady at 1.6. Not bad, but not good either. My trainer devised a series of exercises that would open up my chest muscles and strengthen my back so that I could breathe better. Initially I set my spirometry goal at 1.8L. My trainer said that if I'm going to get there, I need to do cardio on the days that I don't work with him.

My cardio routine is to do 2 miles on the treadmill and 10 minutes on the elliptical. I love the walking but I loathe the elliptical. At first it was very tiring for me and I could barely hang in there for 3 minutes, let alone 10. The great thing about working out on a regular basis is that your body remembers the movements and adapts to them. This is why it's so important to push myself just a little harder each time I exercise. If I settle into too much of a routine, I won't make any progress.

Today I worked with my trainer and he said he could definitely see the improvement. He had also checked the gym's records and saw that I was faithful to come in on the "off" days just to do cardio. The stretches he had me do felt great. I'm finally getting to the point where I can feel the results. One of the exciting results is that my FEV1 is improving. This morning it was all the way up to 1.88L! I'm hoping that it will continue to improve the longer and harder I hit the gym. I've been told that the way to progress is to follow the acronym FIT. I must first increase the frequency of my workouts. Right now I'm at 4 days a week, which is my max so now it's time to move to the I--Intensity. When I walk on the treadmill I should start increasing the intensity by making it more uphill. When I have that locked in after several weeks, then I progress to the T. I should spend more time on the treadmill or elliptical. Perhaps go to 12 minutes and then 15 on the elliptical. Who knows. I'm just so happy to be at a point where my health is stable. I have a feeling all this exercise is only going to improve my stability.

Today was a good day. I began my morning with a trip to the gym to work with my personal trainer. He's aware of my unique needs because of having CF, and he's designed a workout that will really help increase my lung function. I'm already feeling a difference after being stretched out. I tend to hunch my shoulders because I'm a bit barrel-chested. The exercises I did today opened me up and really worked on loosening my tightened muscles. I've been keeping an eye on my FEV1 (I have a hand-held spirometer here at home) and it's exciting to see the numbers climb ever so slightly each day as I get back in shape.

After the gym I took a quick nap then got ready for my afternoon visitors. My good friends, Danielle and her husband Danny were in town for a Padres game and they had their little cutie, baby Bethany along with them. They got here around 3:00 and I got to hold Bethany for almost 2 hours straight while the three of us talked and got caught up. Bethany is a sweetheart! She cooed almost the entire time, stopping only to offer me adorable little toothless baby grins. She still has that "new baby smell" (and another baby smell came later on) and seemed perfectly content in my arms. I only wish my friends lived closer.

Tomorrow I'll get to spend time with another friend--a woman I met at the Mt. Hermon Writer's Conference. She has a very active ministry helping parents of terminally ill children. In particular she's writing a book about the grieving process. Her own life experiences play a large part in what she's doing, having lost a daughter to cancer several years ago. I'll be sure to have a link to her online stuff tomorrow.

Today I'm thankful for my return to better health, good friends, and the ways that God makes himself real to me on a daily basis. I hope I never take for granted these good gifts and this season of my life.

Today was definitely a "May Gray" day. (hehehe, that rhymed.) I slept in this morning for a change, probably due to the medication we restarted to help me sleep. Outside it wasn't quite drizzling, but it wasn't dry either. The air was a cool 65 degrees and droplets condensed on the car windows as I drove to the grocery store.

SIDE BAR

I love going to the grocery store. Unfortunately, I forgot to bring along my reusable shopping bags. The environmental scientist part of me continued to kick myself for it all afternoon. Then I remembered that I do recycle those plastic bags, so I forgave myself.

END SIDE BAR

Brad and our police friend Jeremy went shooting today. Brad came home reeking of gunpowder, but he had a grin on his face that let me know he had a good time. Saturdays are when the law enforcement officers can bring a friend to the range. Brad hopes he and Jeremy can do that again sometime. I don't know how crazy I am about the whole thing, but if he's having fun and is being social with church friends, who am I to put the kibash on it?

I really don't know how I managed to while away the hours today. It's been one of those days where I'm watching the clock just waiting for it to be late enough for me to crawl back into bed. Last night Brad and I both conked out around 9 o'clock. We were watching an incredibly boring movie--The Heist. Even with Pierce Brosnan in the lead role I just couldn't get into it. It was very predictable. We didn't even finish the flick. We just assumed how the rest of it would go. Now back it goes into the little Netflix envelope so someone else can waste their time with it.

With the colder, gloomier weather my arthritis has been acting up. My knees and ankles have been especially painful, but not overwhelmingly so. CF affects so many different parts of the body. Not to mention that every case is unique and all mutations behave a little differently from one another. My mutation is double delta F508 (aka double delta.) It's the most common mutation and also one of the more severe ones. Even with all the complications it comes with, I often feel like I'm one of the lucky ones. I think that's because God has given me the strength and resources I need to cope with this monster disease. He's given me a wonderful extended family and a truly remarkable husband to come alongside me and see me through the hard parts. I'm blessed, that's for sure.

I'm very much out of the habit of writing. The last major writing project I did was to write nearly a month's worth of devotionals for "Anchor" before being hospitalized. I haven't worked on my book, my other blogs or written any articles since then. I used to challenge myself to write an essay (or article) each day. Perhaps that's the sort of thing I need to get me back to where I'm used to writing. I guess that's what prompted today's blog--a sense of needing to write something...anything...just to get the ideas and the "ink" flowing again.

Today was a good day. The first thing I did after waking up was to get the bed made. I've found that the sooner I make the bed, the sooner I feel really motivated to start the day. Breakfast was cereal today, just as it's been for the last week or so. Every now and then I just get into a mood where all I want is the same food item for days at a time. Right now my craving is Cap'n Crunch. I know, I know...

Last night Brad had helped me sort the laundry, so that was the biggest project I undertook today. There was so much of it that it took almost all day. It feels good to have everything all clean and put away. The more time I spend being a "housewife" the more I find that I actually do have the capacity to keep things fairly neat. I like to be able to greet Brad at the door at the end of the day with a smile on my face and dinner almost ready for the table. Sometimes I think I was born in the wrong decade. I wish we lived in a society where women who keep the home fires burning were given more respect and credit. I suppose that's why Dr. Laura wrote the book "In Praise of Stay At Home Moms." I really respect the SAHMs that I know. Kelly is the first one who comes to mind. She has the challenge of twins and her family shares living space with her grandparents who also depend on her. I respect her and am tremendously impressed by how she handles it.

Okay, back to my day. Laundry is finished and now I'm just hanging out enjoying the fruits of my labor and preparing for a restful weekend. Health-wise I'm doing well. My blood sugars are staying well controlled and I'm not short of breath at all. I think tomorrow morning while Brad's out shooting with our police pal, Jeremy, I'll hit the gym for some good cardio. That's my plan right now anyway. I did 2 miles on the treadmill the other day. Eventually I'd like to be able to do 5k--not to run competitively or anything, just something I want to be able to accomplish just on the treadmill would be fine. I've got a lot of work to do to get there though. Maybe I'm over-ambitious. So what?

Well, there you have it. The ramblings of the first of many new blog posts to come. Thanks everyone for checking up on me during my time away.

People have been calling and emailing me worried that my lack of blogging was an indication that I wasn't doing well. The reality is quite the opposite. I'm happy to report that I've been feeling pretty good lately and have been doing things other than blogging. I've been sewing sundresses for Kelly's twins for starters. Over the long weekend Brad and I spent time with family relaxing in Palm Springs.

I'm feeling quite normal these days. I don't know if my lung function is permanently stuck at 1.6L on my FEV1, (for me that's low) but even if it is I'm able to do plenty of stuff. I can climb the stairs without getting winded, I can carry the groceries in without becoming exhausted, and I can make it through the day without a nap. I do still try to nap though, I think it helps replenish my energy. I've been getting dinner on the table for a number of nights now which I know Brad loves. Every day I'm thankful that I'm not in the hospital.

My next doctor appointment is soon and we're praying that the doc will be happy with how things are going even if my PFTs aren't stellar. I don't want to have to go back to the hospital for a LONG time.

We spent Memorial Day weekend in Palm Springs. I was definitely able to tell that the air quality wasn't as good as in San Diego, but it didn't slow me down too much. We lounged around the pool, going in for a dip when it got too hot in the sun. We took a walk to a do-it-yourself frozen yogurt place (apparently they are the latest trend) and we saw the movie Night at the Museum. We ate at a kosher deli that had the biggest pastrami sandwiches we'd ever seen. They were awesome but boy oh boy did we pay for it later. We were all passing the Tums back and forth.

Today Brad and I plan to make our grand re-entry to the gym. It's been quite awhile since either of us has gone, so I'm looking forward to it.

So there you have it. All the great stuff that's been going on that's been keeping me from blogging. :)

Matthew 28 (NIV)

The Resurrection

¹After the Sabbath, at dawn on the first day of the week, Mary Magdalene and the other Mary went to look at the tomb.

²There was a violent earthquake, for an angel of the Lord came down from heaven and, going to the tomb, rolled back the stone and sat on it. ³His appearance was like lightning, and his clothes were white as snow. ⁴The guards were so afraid of him that they shook and became like dead men.

⁵The angel said to the women, "Do not be afraid, for I know that you are looking for Jesus, who was crucified. ⁶He is not here; he has risen, just as he said. Come and see the place where he lay. ⁷Then go quickly and tell his disciples: 'He has risen from the dead and is going ahead of you into Galilee. There you will see him.' Now I have told you."

⁸So the women hurried away from the tomb, afraid yet filled with joy, and ran to tell his disciples. ⁹Suddenly Jesus met them. "Greetings," he said. They came to him, clasped his feet and worshiped him. ¹⁰Then Jesus said to them, "Do not be afraid. Go and tell my brothers to go to Galilee; there they will see me."

Okay, so I've gained about 25 pounds on prednisone, and of course 80% of it in on my belly and the rest is on my face. Most of my clothes are uncomfortable and as I've mentioned before, people keep asking me when I'm due.

A couple weeks ago I bought 2 pairs of maternity pants. Yes, you heard me. Maternity pants. God bless whomever invented these things. They're soft, comfortable and best of all FLATTERING! They don't have that annoying gap in the back that happens with regular jeans. They also don't have any buttons or zippers, so that bathroom urgency (you know, the kind you get when you're on antibiotics) isn't a problem either.

So here I am today looking at the business end of boredom, but glad to at least be comfortable. A girl can only wear pajamas so many hours of the day, you know?