Days 44 and 45

Yesterday I had a normal workout. Actually I pushed myself a bit. I had 5 or 6 one minute sprints throughout my 35 minute workout on the elliptical machine. Yeah, you heard me right, sprints and THIRTY FIVE MINUTES! Where's my trophy?

Today I really didn't want to work out at all. I almost, almost... ALMOST took the day off! BUT I decided since I may not work out next week at all I better stick with it until we leave. All you fitness nazi's, don't hate me for it, I'm just not sure I'll be able to make it down to the onsite gym in between my margaritas. I have good intentions....

So today I asked the twins if they wanted to go on a bike ride. I walk, they ride. Pretty simple. Last time we went Abby complained a little bit, after all 2 miles is a far trek for a 4 year old. But I thought they were up for it. However it was nothing short of a D.I.S.A.S.T.E.R!!! First of all less than a half mile into our trek, Tom's left pedal fell off. No matter, Mommy fix it was able to thread it through and we carried on our journey. That lasted for about another mile, but after that it just kept falling off. And I knew I was doing more harm than good as I attempted to thread the pedal back on only the next EIGHT times it wouldn't go past two turns. When it fell off as we were on our street I just held the pedal in my hand and pushed him the rest of the way. Also about a mile into our ride/walk Abby started complaining... like A LOT! By the time we got home FIFTY minutes later she was in tears. I felt bad for her, but what was I going to do? So i just let her be and she kept sobbing, "Mom! You shouldn't take me on a ride this LONG!"

I brought my handy dandy fingertip pulse oximeter. My HR never got above 130, mostly stayed around 110, and my sats were pretty steady at 94. Considering I wasn't working too hard, even though I was trying to be a slave driver, I'm not surprised that my sats were so good. So if nothing else today was definitely a mental work out! And I'm pretty sure I get extra points for trying.

Week 7

Yesterday was the beginning of week 7. I now have a fingertip pulse oximeter (thank you in-laws!) so it's much easier to spot check my sats when I'm working out. My HR and sats seemed to stabilize yesterday at about 145 and 95%. Today was about the same, a little bit lower on the sats, 93/94%. The good news is, I have maintained my 32 whole minute work out! Maybe I'll go up to 35 minutes tomorrow... We'll see how ambitious I feel!

I had a terrible dream last night. Usually when I dream about not being able to breathe it means I cannot breathe in real life. This used to happen a lot before I was on oxygen at night. I would have nightmares every single night. My dreams were vivid and I was always being attacked, chased or followed by someone. I would run and get so out of breath I couldn't breathe. Or I'd be drowning and couldn't breathe. Anyway last night the same thing happened and I'm not sure why because I woke up and my o2 was still strapped onto my face. Good times! Guess that just happens when you're lungs are as healthy as a 100 year old!

Days 40, 41 and 42

Well Christmas day was day 40 and I had every intention of working out before the extended family festivities began, however, once I started playing with the twins and their toys, I soon lost that one and only half hour window to myself so I skipped the workout. I'll tell ya, transforming Optimus Prime into a semi-truck certainly wasn't much easier than my workout! Why do they make it so difficult?

I got back on the wagon December 26 and 27 with a 32 minute workout on the elliptical machine. Today I did some spot checks on my HR and pulse ox. I was surprised that with 3 Liters of oxygen I was still sating at 93% with a HR of 170. I slowed it down a bit to get the HR under control, but the sats remained at 93. I thought maybe the oximeter was wrong. So I took the oxygen off and my sats immediately dropped to 90. So at least the o2 was helping.

Day 37, 38 and 39

I was really tired on Monday but did my workout of course, because I'm obsessive like that. Nothing out of the ordinary, just 32 minutes on the elliptical machine.

I took a day off on Tuesday because I was out of town all day long. I got home at 4:30, but by then I was pooped and we had family visiting.

Today is Wednesday, Christmas Eve, day 39. I did 32 minutes on the elliptical this morning. i did about four 90 second sprints throughout the workout. I'm sure someday I'll be able to sprint for the whole workout, but for now, I'm nowhere near that.

I don't feel any different as far as my health goes. I'm counting my blessings that I have not had an exacerbation since September. I feel like I may just cruise through this winter! Of course this has a lot to do with the twins and what they bring home from preschool, but for some reason they have not contracted a cold since September! They are home until January 5th, so hopefully we can remain virus free over the holidays. So far so good.

Day 35 and 36

As I move into my sixth week of working out I really thought I'd have more lung volume and more energy than I do. Whoever said working out was supposed to give you energy was wrong. Boo. Bah Humbug. I'm more tired than ever. Ok, that's not true. But I am very tired these last couple of days.

Saturday and Sunday went the same. I'm holding steady with a 32 minute work out. I keep thinking I'll just jump ahead to 40 minutes, but nah, once I hit 32 I'm ready to be done. Not really from exhaustion, though the work out is tiring, it's more from boredom. I think I will eventually work myself up to 45 minutes and stay there.

For now, I'm off to take a nap. ZZZZ ZZZZZ ZZZZZ

Day 34

Today I was really dragging. From the start of the workout I wanted to be teleported 32 minutes ahead just so I could be done. But I soldiered on. I lasted about 15 minutes with a moderate jog. Then instead of quitting early, I slowed the pace just a tad so I could complete the workout, all THIRTY TWO minutes! Yay me!

I have to report though, I feel no different than day 1. My lungs seem to go in cycles whether I exercise or not and right now I'm in a downward trend. I have this little peak flow meter and although I cannot say it is accurate to the fancier models at the doctors office (those of which I have not even seen since I was seven anyway) I can say that I'm confident it is reliable. Accurate and reliable are two different things here. I say the meter is reliable because when I blow a 425 or 450 my FEV1 usually corresponds to something over 50%, say 1.6 Liters. And when I'm feeling more SOB I blow under 400 on this thing. Today I'm at 370. So I can say with a certain confidence that my FEV1 is about 1.4 Liters. We're talking about tenths of a liter here people! But I don't have tenths to spare! (a normal 5'4" female my age would have an FEV1 of at least 3 Liters.

So you see, I haven't really gained any lung capacity in the last 34 days. Sad but true. I can't know for sure because I'm not going to see the doctor until February. But my trusty little peak flow meter has never failed me.

I guess what I'm saying is I feel like poo. But it's more like standard operating procedure poo, meaning, I can still perform all my mom duties. I can be that peppy preschool mom that's got it all together. I can shop, I can clean, I can cook, I can work out. I can do all those things because I have to. But my fevers are back. They weren't really gone all that long. Maybe a week reprieve in the last month. So I'm dealing with 99-100 degree temperatures and no real illness to speak of. Thankfully motrin takes care of all the funny business so I can feel like "me" most of the time. It's just a lot of work.

Day 33 - A New Milestone

So on Thursday, day 33, I set out to conquer the impossible.

Add two minutes to my workout!

Dun, dun dun!

And guess what? I did it! As much as I didn't want to. As much as I wanted to jump off that machine as soon as the clock ticked to 30 minutes on the nose. As much as I wanted to fall on the floor and die all over the place, I didn't. I just kept cycling on this elliptical for TWO WHOLE EXTRA MINUTES. So for the next week or two, I will continue with my THIRTY(two) minute work out.

Day 31 and 32

There wasn't much of anything unusual on day 31. I worked out on the elliptical at a moderate jog pace for 30 minutes. I had the o2 cranked up to 3 Liters. I didn't even wear the pulse ox machine.

On Wednesday I decided to do an experiment with the oxygen and wear it at 2 Liters, instead of 3. I use 2 Liters when I sleep and I have no idea what my pulse ox levels dip to, but I wake rested, so they must stay above 90 at least! But when I work out I gasp a lot if they fall below 94 so I wondered if 3 liters was too much, even though I stayed steady at 96% the other day. I wondered if I could stay at 96% on 2 liters as well. Well I came close but I seemed to plateau at 94% with a HR of 155 on 2 Liters. So I think from now on, I'll stay at 3 Liters. I might even increase my time on the elliptical to 32 minutes for the rest of the week, and slowly work my way up to 45 minutes! We'll see... that sounds rather ambitious right now!

Day 29 and 30

I took a day off yesterday. Since I'd worked out 12 days in a row, I figured I'd let myself slide for one day. Actually what happened was, I got busy! There was no time in the morning, before we left to visit the in-laws. Then I was so tired that afternoon, I just didn't feel like it. So no work out yesterday.

Today was my experiment. I cranked up the o2 to 3 Liters and immediately my pulse ox shot up to 100. It's kinda funny to see that number. So I get on the elliptical and I start jogging. I think I was jogging at the same pace as Friday, but I'll never know for sure. Remember Friday without o2 my pulse ox was 90 and my HR was 162. Well today my pulse ox was a steady 96, which is totally NORMAL! And my HR was 155. So I think oxygen does a body good. I'll have to continue to work out with it, which rules out the possibility of running around the block for now.

Day 28!

I can't believe it's been a MONTH! A whole month of this working out today.

Yesterday was the same old thing. I jogged on the elliptical for 30 minutes with 3 Liters of o2 coursing through my nose. I got off the machine and checked my HR. 145.

Well today was different. Because today I finally have my pulse oximeter! So I decided to work out without the o2, just to make sure I really needed it. And the answer?

YES!

I worked out for 30 minutes at a jog pace. My o2 sats were steady at 90/91. Anything under 94 is NOT NORMAL. It's no wonder gasping for air! When I'm healthy and resting comfortably I sat in the 96-99 range, which is beautiful!

During my workout today my sats briefly dipped to 89 for a few spot seconds but the majority of my run on the elliptical machine, the last 25 minutes they were pretty darn steady at 90%. My HR was also a lot higher than I expected. You see when I take my HR at the end of my workout it slows dramatically during that 1 minute. So I knew I wasn't getting an accurate count all this time, but I had to be close. Although it turns out I was pretty far off! My HR was about 162 for most of my jog. Sometimes higher, up to 165 and sometimes lower, about 155. I think this means I need to see if the o2 brings that old HR down a notch tomorrow. And hopefully I can keep my sats up w/ the o2 tomorrow as well.

I found this information interesting, from the American Heart Association.

"How should I pace myself?

When starting an exercise program, aim at the lowest part of your target zone (50 percent) during the first few weeks. Gradually build up to the higher part of your target zone (75 percent). After six months or more of regular exercise, you may be able to exercise comfortably at up to 85 percent of your maximum heart rate. However, you don't have to exercise that hard to stay in shape."

My target zone is 93 - 158. And since I've only been "actively working out" for 4 weeks, my target should be in the lowest end of that zone, about 93-100 bpm. I'm clearly over doing it! Maybe I need to slow down considering I'm above the highest target zone for my body. I either have a heck of a lot more stamina than I thought, like I'm a super trained athlete already, or I'm actually doing damage to my body.... hmmmm.

Jogging on the Elliptical

Earlier this week I tried sprinting and walking on the elliptical. That was really really tough. So on Wednesday and Thursday (workout day numbers 25 and 26) I decided to try a quicker pace, but not a sprint. Let's call it a jog. It went pretty well but on both days I just wanted to up and quit around minute 20. I didn't though! Cause I'm a tough cookie! My HR was about 145 when I checked it after my workout on both days.

I've been told that since this 30 minute workout is going well I should increase the length of time... we'll see about that. At 30 minutes I'm pretty much ready to throw the elliptical out the window and never look at it again. It's still really hard, but I actually look forward to it just to say I did it.

Day 23 and 24

Monday was an average work out. I didn't get any headaches and my knees are feeling much better. They still hurt when my motrin wears off, but I'm not limping anymore. I did a regular speed 30 minute elliptical workout on Monday.

Today I was a little short on time. I rushed home after some errands to squeeze in a quick workout before picking the twins up from a playdate. I set the timer for 20 minutes and did about 7 sprints during the 20 minute workout. The sprints were meant to last one minute, but I never made it. 30 seconds sometimes, 45 seconds others. I did my best but man oh man! It's tough! And it sucks! My legs burned so much I wanted to scream at the end of the sprints. Is this normal? I like pushing myself but thank god it was only a 20 minute workout. Whew!

Day 21 and 22 - The Wall

Today went better than yesterday. Yesterday was a struggle. I got on the elliptical after lunch and I had to stop a couple times right off the bat! But only for a few seconds. Then at 10 minutes I had to stop again! My legs were burning I was just not into it. Maybe I pushed myself too hard the day before. Then at 20 minutes I wanted to quit for the day, but I didn't. I kept going. I finally finished at 30 minutes with a HR of 125. That's in my target range, but not quite as high for my normal 30 minute work out.

Today went a little better. I noticed that my back spasm doesn't hurt as much if I don't watch TV, which is sad for me. The TV is quite a bit lower than my line of vision on the elliptical. So I think it's causing me to have poor posture, resulting in a stinging burning upper back spasm, which I've had for umpteen years, at least since high school. It's a side effect of all those years of coughing and lots of cystics have this problem. We all have bad posture which results in knots in our backs. It's great fun! So today the twins were roaming around the room when I was starting my exercise, so i didn't want to turn on the TV. So I noticed if I stared straight ahead (which gets quite boring after 30 minutes) my back doesn't hurt AS much as when I watch TV. Today I did middle of the road and didn't have to take any breaks during my 30 minute elliptical workout. During the last minute I really pushed myself and my HR was 145 when I finished. Much higher than the day before, and I think it was a little over my maximum target too, which can't be good. I wore my o2 again but when I was gearing up to speed during the first two minutes when my legs burn the most I had a horrible headache anyway. It did subside but I'm sure it's all just some big vicious circle about poor oxygenation in my decrepit body.

The knees are feeling better, but not 100% healed. I don't have pain when I walk around the house which is great. But I still feel strain when I make certain motions. Maybe one more week and I'll be healed!

Day Twenty!

Goal: Sprint 2 minutes, continue at normal pace 3 minutes, repeat 5 more times.

I can't believe I've made it twenty days. Go me!

Yesterday I did the elliptical for 30 minutes. Then last night I was in a chat room online with some fellow CFers and one of the exercise guru's (I'm talking about you Chags) told me to try and sprint two minutes then continue at a regular pace for 3 minutes. I thought he was talking about running at first. I don't know why it never occurred to me to do this pattern on the elliptical machine. I guess because I've never taken any type of spinning class or whatever they have at those fancy gyms. I've also never really done cardio on purpose. I mean, I used to play sports but those days are long gone.

I ended up setting my bar a bit lower. I sprinted for 1 minute and then continued at a normal pace for 4 minutes. Somehow I repeated this process, but in the midst of watching ER on tivo during my routine and not having a stop watch I only ended up with 5 sprints in a 30 minute period, not 6. Go figure. You'd think I had a degree in math or something. I also did my workout today while wearing 2 Liters of o2 flowing up my nose. And you know what? I didn't get a headache. Hmmmm.... If only I had a pulse oximeter to see what was really happening to my oxygen levels when I exercise.

On the knee front, they are still sore and there is no end in sight! I keep re-injuring them as I do normal things like get down on the ground to put the twins' shoes on and stuff like that. *sigh*

Days 17 and 18

Yesterday and today are elliptical days. I'm just not feeling up to pounding the pavement outdoors. I can barely walk around the house without feeling like my knees are being crushed by thousand pound weights with ever step. Actually it's not that bad, but I'm totally aware of the pain with every step. The Motrin really helps and I can totally tell when it wears off because my knees get achy and it's even harder to walk. The good news is the elliptical doesn't seem to bother my knees all that much. So I did the machine for 30 minutes yesterday and plan to do the same today. Yesterday I got my heart rate up to 133 which is perfect for my age. My target heart rate is between 93 and 140. I still don't feel like the elliptical gives my lungs as good of a workout as walking or running, but it will have to do for now.

Day 16- A Day to Rest

As mandated by the husband, I am taking today off to see if it helps the old knees. I guess he was tired of watching me hobble around the house this weekend.

Day 15

Short update today! I can't believe I've been exercising for two full weeks now.

It was a really nice out this morning so I took a speed walk around the neighborhood. Ended up doing 2.6 miles in 40 minutes. I'm feeling pretty good considering this is cold and flu season. I hope everyone can keep their yucky germs to themselves!

Elliptical Workout - Day 14

Goal: 30 minutes (fast or slow...) on the elliptical machine

Yay! Yippee! Wahoo! I got an elliptical machine at home!

One of my friends here in Elk Grove had an OrbiTrek collecting dust in her garage so I asked Paul if he could pick it up for me this morning. Now the Orbitrek is kinda like the Ford Pinto of Elliptical machines. But I am THRILLED to have it for FREE in my home! Having never used a $4,000 elliptical at the gym, this model that runs about $200 is just fine for me at this time.

We dusted it off and set it up in my bedroom (right in front of the TV). I got to jump on it just now and whew! What a workout for the old quads! It felt good but I felt like my legs got really tired long before I was huffing and puffing enough to cough any crap out of my lungs. I think I have a new plan to walk for a couple miles every other day around the block and do the elliptical workout on the days that I don't walk outside. No more running! Not anytime soon anyway. My right knee is still in a moderate amount of pain when I try and run. Stupid knees!

A Long Walk

My knees are still hurting so I decided not to push it today, after taking a whole day off exercising yesterday! My hamstrings are also killing me. I tried stretching them out and going for a walk. I walked 2.6 miles in 40 minutes. Woot Woot! But then I had to soak in a hot hot bath just so I didn't look like a 90 year old shuffling around out in public as we went out to dinner tonight. I celebrated my walk with a nice warm Pizookie for dessert. Yum Yum!

A friend of mine offered to loan me her eliptical machine. I'm going to take her up on that, because this pounding the pavement thing doesn't seem to be doing my body good. I really miss the days I ran from the street hockey court across the street to the soccer field for another game. Ah.. to be 20 again!

Day 11 - So Many Words

There are so many words that describe how I feel at this moment.

awful
miserable
bad
terrible

...just to name a few.

So I decided to push on, and go for the run today. Two steps folks. That's all I could muster as my knees screamed with pain. Ok, no running. I'll just walk briskly. As with my little experiment last week we all know I get the route done in just the same amount of time anyway. 2 miles and 32 minutes today. The pain is not so bad while walking. But I'm hurting right now. If I could amputate just above the knee right now... oh how sweet that would be.

Now if this was muscle hurt I wouldn't be complaining too much. Muscle hurt goes away. I'm very familiar with muscle hurt. You can't be an intramural hockey/soccer/water polo all star without having experienced muscle hurt. But this is like tendon or bone hurt. I'm really not sure which. It's very acute and sharp and only really when I run, or bend in funny yoga positions. I might still do the walk tomorrow, or I might take a day off. I did not have this kind of pain last week so I hope it's just a fluke. For now I'm going to go swallow a whole bunch of motrin. Sadly, it's the most potent thing in my medicine cabinet.

Back on the Horse - Day 10

After 4 days off, I got back in the saddle today. I was on vacation in San Diego and although we did do some walking, even a few miles, it wasn't much of a workout but it was exercise!

Of course today I have the twins with me, so it was a little bit different. I put them on their bikes and we set off on my 2 mile course. They were really dragging, and I thought they were slowing me down, but we ended up making it back home in 33 minutes. We took a small shortcut (skipped going through the park, so as not to make them jealous of all the kids playing)

As for me, I felt pretty good, but my knees were killing me. Like if you have one bum knee, you can always kinda limp, but when you have two bum knees, it's hard to limp on one, and then the other. It hurt pretty bad, but I just kept going hoping that maybe they were stiff from not running all weekend. Then I thought maybe they were sore from actually running last week.

I have figured out that I can jog longer if I don't go full bore the whole time. So I jogged quite a bit on our route today. Probably at least 8 minutes worth. I had the stop watch with me, but I was a little distracted crossing all the streets with the kids on their bikes, and then their complaining because they were tired. I probably looked like a crazy jogging hitch hiker because I told Tom there were going to be signals. Thumbs up if its safe to cross the road. And then we had a signal for "stay put, do not cross." So I'd jog out into the middle of the road with my thumbs up and kind jog in place until they were safely across together. It worked out well. I made these hand signals for them because I knew I would be too out of breath to actually speak to them. They listened really well!

I'm a little frustrated that I don't feel like I can run any longer than when I first started running last week. I'll keep at it, but I'm telling ya now, if I don't have results in six months, I'M QUITTING!

Day 5 - A Run In the Park

Today didn't go exactly as planned. The twins don't have school on Thursdays and I didn't have anyone to watch them this morning, so I decided I would run laps around the park while they played. Well that went over like a lead balloon. They wanted to run with me! Only they didn't want to run, they wanted to walk because they got tired. But they weren't walking fast enough for me because I wasn't completely out of breath. We finally worked out a happy medium where I ran small laps that lasted 1 minute around the play structure. And then I'd walk a lap. Then run. This went on for about 25 minutes. So I'm not sure how far I ran. I probably ran for a total of 8 minutes, which is kinda pace with what's been happening on real work out days anyway. It was just mayhem for a while at the park until we got into our groove. We'll have to work on that for next week because I have the twins home with me all week for Thanksgiving break!

I'm not sure I'll be able to get any exercise in on Friday, Saturday and Sunday. I am flying to San Diego early Friday morning and spending the weekend with some girlfriends. I hate to stop running so soon, but I know I'll be back at at on Monday. Even if it's raining! (I hope the weatherman is wrong!)

Day 4

Last night I was talking to Paul about my running/walking routine and I said, "ya know, I think if I just speed walked the whole two miles I'd probably make it in the same amount of time."

Well, wouldn't ya know it, I was right. (I'm always right, aren't I?) So what does this tell me? I'm not quite sure. Is walking fast (out of breath to the point I cannot carry on a conversation to save my life, but not hacking up a lung) just as good as the run/walk combo? I think I still cleared out my lungs just as much as when I'm running, but I wasn't running. If you have any insight on the subject, do tell. For now, I think I'll continue with the run/walk combo next time. It's definitely harder to do, though both exercise sets are difficult for me.

Let's see what can I complain about this afternoon? I feel like I have a fever but I don't. I'm beyond tired, like all I want to do is curl up in bed but I have treatments to do. Oh and two kids to take care of. And my right leg is aching, like it used to do when I was a kid and I had circulation problems. Motrin usually clears that up, but I'm not due for my next dose until 2:45PM and it's only 1PM. Yup, I think that just about sums it up. Oh, and I feel like I moving in slow motion. Like I have lead weights attached to my arms and legs. I'm telling ya folks, exercise is not all that it's cracked up to be. But I push on...

Running Day 3

Goal: Run 2 minutes, walk 3 minutes. Repeat five times.

I woke up sore, wobbled over to my drawer of drugs and popped my first 800mg of motrin for the day. Don't worry, I'm not overdosing, it's actually part of my treatment regimen to take three of these puppies every single day. It reduces inflammation in the old lungs. My back ached as I stumbled out of bed today, but my right hip and right knee seem to be on the mend.

So today's goal was the same as Day 1 and Day 2. On those days no single running "burst" lasted more than 90 seconds, despite my goal. Well today (hold onto your hats ladies and gentlemen!) my first running burst lasted 2 minutes and 10 seconds! Holy cow I'm a rock star! But the next 6 rounds lasted anywhere from 1 minute to 90 seconds which is not so great, but not worse than the first two days.

My route is about 2 miles long and the first day it took me 32:30. The second day I shaved off 1 whole minute. And today I shaved off another minute, coming in the driveway at 30:30! When I got to the top of the driveway (I'm making that sound more grand than it actually is) I leaned over resting my hands on my knees to catch my breath. I stayed there for about a minute and it felt so good... just... to... stop. I stood up and got super dizzy. I'm pretty sure this is just a side effect of being out of shape. But perhaps it's a side effect of not oxygenating well during exercise. I must investigate further into possibly purchasing a pulse oximeter.

I'm not going to lie to you folks. This running thing sucks. It sucks, sucks, sucks. I hate gasping for breath. I feel like I breathe in and some evil barricade has been built to block the full expansion of my lungs. I want to breathe in more. I need to breathe in more, but it just stops. And I gasp and pant and wince with every breath. Then I choke and sputter and spit. It's really a beautiful thing. I'm just glad I picked my routes to line the outside of our neighborhood, so as to run into less people. More cars, but less actual people. I did run into one people today.. twice! This man was in total pedestrian clothes, like a button up shirt and khaki's and he was strolling around the block. About a mile later, I passed him again. He was going the opposite direction of my lap both times. But still, not breaking a sweat, just strolling along. Probably traveling the same distance as me and I'm practically dying, trying to make good time and there he goes. Strolling through the park. Ugh.

About Me

I'm writing this entry so you can get an idea of who I am and where I came from. I intend the rest of my blog entries to focus on my new exercise regimen. Without further adieu, my introduction:

I've been consumed by Cystic Fibrosis. I mean, literally I think about it all the time because it takes up all my time. In the last five years, my daily treatments have increased from a half hour twice a day to a whole hour three times a day. That's a lot of commitment for something I never signed up for. But I did sign up to get married and to have children and for them I will do anything to just keep breathing.

I was diagnosed with Cystic Fibrosis when I was 3 months old. I have a box full of all my baby pictures. In it you will find not one single roll of film developed in April 1976. That was the month I spent in the hospital, nearly dying from this disease my parents didn't even know I had. How devastating to find out your newborn baby has a genetic defect that will likely kill her before she finishes grade school. Children with Cystic Fibrosis rarely celebrated a 12th birthday in those days. But times have changed, now half of us live to see our 37th birthday!

When I was 8 years old I started going to a Cystic Fibrosis summer camp in Northern California sponsored by the ever so generous Cystic Fibrosis Research Inc. Camp became the single most important week of my life from the age of 8 through 18. Even when cross infection became a hot topic and most CF summer camps closed their doors I didn't bat an eye. Before the age of 18, I would have rather catch an awful bacteria in my lungs that could kill me than stay home from summer camp. I was going to die anyway, so why not have fun and enjoy living? But after I turned 18, there was college and I suddenly got too busy to return to the place that brought so much excitement and anticipation year after year.

Fast forward to today, where I am 32 years old, married, two kids and a dog in Sacramento suburbia. I don't take risks with my health anymore. I am vigilant with all my treatments and medications. This is not different from the way I grew up, thank god my parents were spared the rebellious teenager syndrome with me, but it's different today because the number of treatments has grown to the point of consuming my day. I can no longer hold a full time job. I am a disabled adult. I drive with a handicap placard in my car. I take over 20 different medications every single day, multiple times a day.

A few days ago I was reunited, albeit online, with an old camp friend. Before sending her a note, I browsed through the pictures she had in her Facebook album. I saw that she had one picture with the caption, "on my way to Stanford to get evaluated for transplant." I immediately thought well this is typical for a cystic our age. I wonder if she has been saved by a double lung transplant yet. Or maybe she's still waiting for one. Regardless, being thirty something and living with this disease you kinda have to expect this kind of hurdle. I have to admit, I was a little jealous. She was either already sick enough to get a transplant or maybe she'd already recovered from one.

A lifesaving double lung transplant is definitely something I want to explore when the time comes. But I'm not sick enough yet. I want to use up these old lungs as much as possible but at the same time, the life post transplant can look glamorous to someone in my condition. That is of course if you don't end up six feet under first. Transplants are not fool proof yet. They are not a guarantee to a better quality of life, just a chance at one.

I consider myself a fairly high functioning cystic, even as much as my lungs have deteriorated over the years. I keep close tabs on how well I am fighting this terrible disease by measuring my FEV1 at my doctor visits. I can usually tell you exactly what it's going to be before I finish the test. For the last year or so I've maintained a baseline of 1.50 Liters. However, at my last "well checkup" appointment two weeks ago my FEV1 was 1.38 Liters, and I wasn't even sick. In fact my doctor commented on how clear my airways sounded. I was doing great!... for me.

A healthy female at my age and height should have an FEV1 of about 3.0 Liters. In laymen's terms I like to describe the FEV1 as "lung capacity." As you can see I'm falling below the 50% marker even though I consider myself hyper-compliant with treatments. The typical threshold to start considering a double lung transplant is when your baseline FEV1 starts to teeter below 30%. It's much more complicated than that, but you get the idea.

I decided to get in touch with my old friend and find out how she was doing. The response I got was very surprising. It seems she did get evaluated for a double lung transplant but was deemed too healthy with an FEV1 of 40%. She'd been stuck at that level for years. She changed doctors and her new doctor told her she was too young to be this sick (any thirty-something cystic would find this statement shocking). In the next year her FEV1 rose from 40% to 71%! Her CT of the lungs showed minimal permanent damage. Oh what I could do with 70% lung capacity!

I had to find out what her secret was. I think I already knew, so I was a bit disappointed when she wrote me back and told me it was exercise! Now this friend of mine has inspired me to run for my life. It is possible I have far too much permanent damage, after all, every cystic is different. This disease can be ruthless. But I'll never know that unless I try. So last Sunday I embarked on a 6 month journey to see if this running thing can get me out of my lung slump. The rest of this blog will be about my running adventures. I have no idea what the next six months holds, but it's sure to be an interesting experiment!