Peak Performance

8:00am: It felt pretty good to sleep in! I actually woke up at 7 to do my treatments before the walk and hike this morning, but that extra hour of sleep was refreshing. When I woke up I was coughing up a decent amount of mucus that was dark yellow in color, so I'm thinking that is stuff that has worked it's way up. By the time I took off for the walk my flem was clear. It was a very leisurely stroll this morning and shorter than usual. Mandi and I walked to the store to pick up some bananas, apples, and granola bars for our hike later. As of right now, I don't know where we're going to hike, but there are plenty of options here in the valley. Which ever peak we choose better have ambulance access cause this could be interesting.Total Distance: 1.0 mile

9:30am: We decided to hike today and I would go to the gym tomorrow. I think I need to stay away from the gym once a week and hike the day I don't go. Today we decided to hike Squaw Peak. Squaw peak starts at 1400 feet and ends at 2860 feet. Driving there I was planning on making it to the summit which is a 1.2 mile hike (2.4 miles round trip). One hiking website said that it was a strenuous hike and did not recommend children. I'm not a child, so I figured I could do it. The peak was extremely busy which was nice to see. It would be a shame not to take advantage of this great weather. We pulled up to the parking area and I took a look at the peak and thought to myself, "This doesn't look too bad". I was really looking forward to see what I could do.

Then I actually started the hike. About 100 yards into it my legs burned and felt dead and my lungs seemed very small. I was going to be in trouble. After a little while my legs kinda went numb but my lungs were hurting and my heart was pounding. Many parts of the trail are just like climbing flights of stairs. The only difference is that they are rocks and usually jagged and odd shaped. When we hit the .75 mile marker we had already stopped about 20 times so I could catch my breath and get my heart rate down. At some points my heart rate reached 160bpm but was generally in the 150 range while hiking. When we would stop, I would get a drink of water and get my heart rate back down to under 130bpm. At the .75 mile marker Mandi and I were negotiating on how far we would end up going. We reached the marker in 45 mins so we were thinking about just taking it to one mile. As we hiked a little further and around a bend, we were able to see the summit. Mandi asked if I wanted to turn around and go back to the car. There was no way. There was no way that I was going to turn around and go back to the car when I could see people hanging out at the place I wanted to be.

The only problem was at that moment, the hardest part of the hike began. It was more straight up with huge rock steps. I wasn't sure I was going to make it but I figured that the worst that could happen is that I die trying. Mandi picked out a mother and daughter who were slightly behind us and said that we had to beat them. I'm always up for a challenge. It was a classic race to the finish. They passed us at one point because I had to take a break. My pulse was racing and I couldn't pull any air in. We kept truckin' and eventually passed them when they tuckered out. After passing them, I was always looking over my shoulder to make sure that we would finish first.After 1 hour and 45 mins we reached the summit. You could see every part of the valley and the view was breath-taking (I just don't know if it was really the view or the fact the I had just climbed 1.2 miles of mountain stairs). We rested at the summit and ate a granola bar. On the way back down, Mandi set a goal of getting back down in under an hour. We actually managed to get back down in 40 mins. There were parts of the trail back down that I actually ran because it was flat enough (granted, my longest stretch of running was about 30 yards).

The car was .3 miles away and I really wanted to run to it. Uh, yeah, didn't happen. Nice try slick. My legs felt like they weighed 600 pounds each and I almost fell over trying to tie my shoe they were shaking so bad.We finally got back to the car and headed to our other weekend tradition. Good ol' Dunkin' Donuts.

I know one thing, I certainly run on Dunkin'....I think I took that a bit too far. Sorry.

Total Distance of Hike and to the Car: 3.0 miles

Total Distance Run/Walk/Hike: 4.0 miles

The One-Eyed Pirate Stare

6:00am: This morning was a little rough. The game got over later than I thought it would, so by the time I grabbed a snack (can of tuna) and did my treatments, it was midnight. I actually woke up before my alarm went off and I had a feeling it was close to six but I was praying that I had a little longer to sleep. I rolled over to grab my phone and when I went to open my eyes only one agreed. I was laying there giving my phone a one-eyed pirate stare trying to tell what time it was. The other eye (I think it was my left) was super blurry, so at first all I could make out is that it was 5 something. After my eye adjusted and I grabbed a crow bar (I keep one under my pillow) to open the other eye, I saw that it was 5:58am. Son of a....I need to get up, but I was SO tired. My phone alarm went off during this time reading debacle and I hit snooze. I hate doing that because I know it can be a slippery slope and before you know it, it's 7. I only hit the snooze button once though and I was up and at 'em at 6:05.

Jezzabel was there to greet me at the landing of the stairs (generally where she sleeps) so I told her to find her leash and off we went. My lungs felt tighter this morning than previous mornings yet I didn't feel as labored (can I use that there?) when I walked. I was coughing up a storm and most of the mucus looked pretty clear. I think I only dry heaved once which is an improvement. Once I got into the swing of things everything felt pretty good with the exception of feeling like a horse kicked me in the right hip region. I pushed through it and ended up doing the same loop I have become accustomed to. I need to increase the distance in the loop next week though to step up my mileage.

Total Distance: 2.1 miles

Side note: Mandi gave me a heart rate monitor to use during my walk/runs to track my pulse. This morning it got up to 136bpm with just the walk. I believe my resting heart rate fluctuated between 99bpm and 102bpm. I really need to improve those numbers.

11:00am: Today was supposed to be chest and back again but my chest is super sore so I tried to think of other creative things I could do at the gym. After coming up with nothing and being called out by Mandi, I decided to suck it up and stick with the schedule. She said, "Remember, your body is a machine like any other and it adapts to the stress you put on it". Well put Robocop. She knows just the right things to say to me. So I went to the gym feeling pumped up again and everything went really well. I increased my weight or reps on every exercise (except for incline bench which decreased) and I even added pull-ups (with a lot of weighted assistance). There was only one hitch. My last chest exercise was seated cable row so I increased my weight from last week and did the same amount of reps. The first set felt really good, but I didn't want to push it, so I left the weight alone. Then a kid sat down to the machine next to me to do the exact same lift. Now he was about my height (5'9") but 130 lbs soaking wet. I mean he was teeny tiny. 130lbs might be pushing it. Anyhow, he started the exercise doing the same weight that I was doing. Ok, I thought, good for him. That's when it all came apart. While I'm sitting there slightly embarrassed that this kid half my size is doing the same weight, he immediately gets up and increases the weight. He was just WARMING UP! He went on to increase the weight every set eventually crushing my weight (and my ego) to oblivion. Here's the kicker, after I got out of the locker room to leave, he was on the same assisted pull-up machine. How much assistance did he need you ask? Don't even go there. I am certain that there was an invisible man lifting him up because he was cranking out pull-ups like he had wings on. Until we meet again teeny tiny boy....Current Weight: 189lbs

5:00pm: Today, Mandi and I took off to scope out some restaurants that we could eat at later. I drove a loop earlier in the day to find the best walking path to get there. I didn't run too much tonight because Mandi and I got caught up in conversation and one thing I can't do is run and talk at the same time (For that matter, I can't walk and drink coffee in the morning at the same time. I have to stop every single time that I want to take a sip). Running takes away way too much of my oxygen to be able to utter any words. When Mandi asks me a question, I either respond with a grunt or sign language. The other day while running, I told her that I sent an email by typing on an air keyboard and then pretending something was flying away. She got it, but the again, she's brilliant.

The walk tonight felt easier than other ones so far, but mostly on my feet and legs. I think they're finally getting used to pounding the pavement. My lungs have been tighter than normal all day today and I'm not quite sure why. I did however seem to recover more rapidly on the running portions of our walk. While running, my pulse got up to 150bpm but quickly got back down into the 120's while walking. The weather was perfect for the walk and we decided where to eat. Mission accomplished.

Total Distance: 3.1 miles

Total Distance Run/Walk for Day: 5.2 miles

3rd Day's a Charm?

6:00am: When the alarm first went off this morning I thought I was dreaming. My dream involved a spaceship, the sun, and some commander guy (we can get into that some other time). I'm pretty sure the beeping I heard was the spaceship backing up and not my alarm (I stand by that). Anywho, my alarm goes off and when I tried to get up I couldn't get out of bed because apparently someone came in the middle of the night and chopped them off. They were so dead. I was thinking to myself that the bed was a perfect place for my dead legs, but in the end somehow managed to get out of the sack. Granted that whole scene there took a matter of 3 to 4 minutes but it sure felt longer. At the beginning of the walk it was the same old same old. A lot of coughing and hacking up loogies onto the sidewalk just in case I got lost I would have a trail to follow home and some more coughing. I think I only dry heaved twice though so we're making improvement in that camp. Jezzabel is also improving right along with me, although in one stretch she stopped to sniff 482 times (I counted). There was only one hitch in the walk. Me thinks that I took a wrong turn, but I feel just as strongly that I didn't. I seemed to notice houses that either were built last night or I've just been blind to. The distance would be the same no matter which path I took so it's a wash. Thought of another hitch: I literally have a hitch in my step because that little round bone that sticks out of the side of my ankle hurts. It is constantly hitting my shoe and it's starting to get painful/annoying. I'll have to figure something out.

Total Distance: 2.1 miles

9:00am: I left for the gym earlier than usual today so I would be home for my beloved Wildcats to take on the Scum Devils. The gym was less packed than it is at noon, so I may have to look into working out earlier. Today was all about those long threads that hang down from the sleeves of my shirt...oh wait, those are actually my arms. I worked on my biceps, triceps, and forearms. Or as people like me in the biz call them our bi's, tri's and fores(?). Who knows. Well like every other day this week I am extremely weak and slightly embarrassed when I lift. Almost every girl at the gym today was curling more weight than I was. Oh well, just more motivation. Current Weight: 190 lbs.

Side note: I'm working on getting a new nebulizer compressor because my old one just isn't cutting it anymore. I need one with more juice. I'll let you know how that goes.

5:00pm: Mandi and I picked up the pace on our run/walk because a buddy of mine is treating me to a Sun's game. Thanks Wong. I've got to say that today felt better than yesterday and I'm hoping not as good as tomorrow. I definitely ran more of the 2.1 mile loop than yesterday, but still only ran maybe .4 miles total. My mucus is really clearing up from all of the coughing that I do while running. When we got back I asked Mandi if somebody mugged us on the road because I had a huge stabbing pain in my lung. I thought maybe I got shanked and never noticed. Hopefully, it's just air getting into a part of the lung that it hasn't been in a while.

Side note: While on the run I saw a FedEx delivery truck. Did you know that a perfect arrow forms between the E and X of the logo? I didn't until about 3 months ago. Then again, I'm retarded.

Total Distance: 2.1 miles

Total Distance of Run/Walk for Day: 4.2 miles

My Cystic Fibrosis

My genotype is Double Delta F508

My Medications

My Supplements

My Pulmonary Function Test History

My Equipment

My Medications

Zenpep 20's: 9 with meals 4-6 with snacks
Albuterol 3ml/Atrovent 2.5ml: 3-4 times daily
Pulmozyme 2.5ml: 2 times daily

Hyper-Sal 7% 4ml: 2 times daily
TOBI 5ml: 2 times daily (28 days on, 28 days off)
Cayston: 3 times daily (28 days on, 28 days off)

Inhaled Gentamicin 4ml: 2 times daily (28 days on, 28 days off)(No longer using)

Protonix 40 mg: Once daily on TuThSat
Azithromycin 500 mg: Once daily on MWF
Multi-vitamin: Once daily
Vitamin D3 1000mg: Once daily
Vitamin K 5mg: Once Daily

inCourage Vest by RespirTech: 4 x 30 minutes per day
Orkambi 200/125: 2 times a day
Aminocaproic Acid 500mg: 2 to 6 tablets daily
Metoprolol Tartate 12.5mg: Once daily
Dulera 200mcg: Two puffs, Twice daily 

Other Links:

My Supplements

My Pulmonary Function Test History

My Equipment

My Supplements

Vitamin C 500mg: Twice daily
Vitamin K 5mg: Daily
Vitamin D3 1000mg: Daily
Oxygen: 2 liters at night
Garlic (Not currently using)
NAC 600 mg: Twice daily (Not currently using)

Glutathione 250 mg: Once daily (Not currently using)

Fish, Flax, Borage Oils: Two capsules daily

Glucosamine Chondroitin: Two capsules daily (Not currently using)

Other Links:

My Medications

My Pulmonary Function Test History

My Equipment

Here We Go Again

6:00am: You have got to be kidding me, it's already 6 again? When I rolled (to put it accurately) out of bed this morning, every muscle in my body hurt. I was achy, tired, sore, and the last thing I wanted to do was get up. But then I said to myself, "These miles aren't going to walk themselves, get up clown". So I was up. I hobbled over to get my clothes and shoes while trying to block out the pain pulsing through my legs and feet. My elbow feels like somebody was hammering it with a blunt object all night and I still haven't digested the chicken fajitas from last night's dinner. Ok. Here I go. Jezzabel was there to greet me and apparently she already knows that we walk in the morning even though it's only been one other time this early ever in the history of her life. That was yesterday. So off we go down the street and within 50 yards I'm coughing my brains out. First the mucus was a pretty dark yellow but it got lighter as the coughs kept coming. About 250 yards into my walk I was doing my best to hold down last night's dinner. I came real close to letting it fly but I was able to keep it below the breaking point of the back of my throat. After a couple of dry heaves, the walk went a lot more smoothly and my lungs really started to open up. I can't say that this is the most fun thing that I have ever done, but if I can keep it up, I really think it's going to make a difference.

Total Distance: 2.1 miles


11:00am: Gym time! Not that I have some huge desire to go, but I know that I have to. I'll share something a little cheesy that I was thinking about at the gym today. I said to myself, "You have to work out like your life depends on it, literally". I know that sounds kinda corny, but it many ways it is very true. If I plan on living a long and productive life I can't just hang out and watch American Idol all day. Working out for me isn't about muscles and strength. It's more about giving my lungs a work out and doing some controlled breathing while lifting. There were times today that I thought I was going to fall asleep mid-set and the other times it was just pure pain. I pushed through it though and I'm really glad that I did. Today I worked on my shoulders (very weak due to past injuries), legs, and abs (if you can call them that. I just crunched my bloated belly). I was going to do arms, but Mandi and I are planning on hiking this weekend, so I want to give my trunks time to recover. Alright, time for some peanut butter and apples. Current Weight: 191 lbs.

2:00pm: I was running errands for a while today and I've got to say that I have a decent amount of energy. I'm actually looking forward to running later (although hobbling might be more accurate since my legs feel like one big charley horse). I also am looking forward to laying on the couch and watching American Idol too. So don't go thinking that I'm a runner just yet.

5:30pm: Mandi went for a 4 mile run while I did my treatments and awaited her arrival for our walk/run. We set out on the same course that J Bell got walked this morning. Mandi is a perfect run coach cause she pushes me, but not to the point that I think I'm going to die...although at times I think about it. She will pick out a spot to run to, we run there, and then I catch my breath. After the first running section (after an extended walking portion to loosen up my legs) I couldn't catch my breath for a good 5 minutes and I was concentrating on not losing my lunch (fajitas from last night). The food stayed down and luckily every running stretch got easier to the point that I would sprint (more goofing around than anything) for 15 yards or so. As I write this, there is definitely a good amount of lung pain all over, but I think it's because they are opening up for the first time in a while. At least that's the hope...

Total Distance: 2.1 miles

Total Distance Run/Walk: 4.2 miles

The First Cut is the Deepest

6am: Alarm goes off and I'm already thinking that this was a bad idea. I slept ok but every time I woke up during the night, I stayed awake for at least 5 minutes listening to the "submarine" that provides me oxygen. I hope I get use to this concentrator ASAP or the docs are going to have to come up with a new plan of action. Anyway, I role out of bed and I have a headache, I'm coughing up a bunch of mucus, and my right lung is killing me. Do I just scrap this whole thing and crawl back into bed? I thought about it. I roll downstairs to have a little bit of tylenol coffee to get rid of my headache and lace up my shoes. I'm ready for this. I start down the street and already I'm coughing my brains out. There is a trail of mucus following me marking every step that I have taken. I'm winded. I'm tired. I'm trying not to throw up. I am however dry heaving. I wasn't sure how far I was going to be able to go, but I decided to push through all the crap and just do it (that should be a slogan).Anyway, I'm in good spirits and I'm ready for this challenge. I just hope that walking my dog first thing in the morning gets easier.

Total Distance: 1.6 miles

9:30am: I was on my way to the gym when I remembered that I needed an oil change. So I went to the Honda dealership to drop off my car and from there do a run/WALK. I put walk in CAPS because I do mostly that, walk. I'm guessing that the furthest distance that I covered in a straight shot running was 100 yards. After about 1.5 miles of the run/walk my legs started to feel really dead and my back started to hurt. So, because it is the first day, I peeled back a little and walked the rest of the way back to the dealership. I will say though, my lungs still hurt pretty bad, but they felt better than this morning. I'm moving the right direction!

Total Distance: 2.3 miles

12:00pm: So I finally made it to the gym to prove to my mind that my body is weak. Let me tell you, I proved a good point. I was lifting lighter weight than when I was in 7th grade. I worked out my chest and back with various weight exercises. Everybody in the gym probably thought I was super cold because I was shaking so much trying to do the bench press. I've got a lot of work to do. Current Weight: 195 lbs.

6:00pm: Mandi and I decided to give it a go at tennis tonight. We arrived at the courts with rackets and tennis balls in hand, but there was a problem, no courts available. We made the best of it and hit balls back and forth on the basketball court. Luckily, Mandi's aim isn't the best, so I got a pretty good workout just chasing the balls around.I can tell you one thing: I cannot wait to get to bed.

Total Distance Run/Walk: 3.9 miles