After debating back and forth with myself on twitter on whether or not to run today, I ended up running just before the rain storm came in. I can thank Tom and Abby for that motivation. The look on their faces when I told them we were not going to run this morning! Oh, they were too heartbroken. So running I went.
Today I took some notes. I noticed first that I had some intense pressure in my head. It's more like between my ears and it makes everything sound really muffled. I wonder why that happens? It's like I'm being strangled, only I'm not.
I also took my pulse ox with me so I could see how badly I was de-satting even on 5 freaking liters of o2. Well I mostly stayed at 91% which isn't bad, but it's a far cry from how well I feel at 95% and the lowest dip was right when I ended and practically keeled over from breathing so hard, at 89%.
My time also suffered today, but I'm going to blame that on the wind. it was quite windy and I think that slows me down. My 1 mile time was 13:07 today.
So when's it going to get easy?
Friday, November 20, 2009
Thursday, November 19, 2009
Mile A Day
So I've been doing this Mile A day thing for about a week I think. I took some time off when I flew to San Diego. I don't have any way to transport my oxygen tanks when I travel in the air, so I get to take breaks off running when I vacation.
Today I ran my mile in 12:56. I'm not impressed with the time, but considering the amount of ground I covered while walking, I think it's ok. I wish I could get under 12 minutes. I always set out with high expectations. I run and it feels great for about 40 seconds. How sad is that? FORTY SECONDS. That's about the amount of time it takes for my sats to drop.
I was telling Paul the other day that running with such low oxygen sats is really hard and I feel like I can't breathe in deep at all. I'll have to video tape it sometime so you can see how much I struggle. Sometimes I get really panicky like I'm never going to be able to catch my breath. I didn't have the same panic while I was jogging, training for my 5K. I think it's the extra exertion that causes the extreme breathlessness that only someone with chronic lung disease can appreciate. It kinda sucks. I miss the days of breathing effortlessly!
Today I ran my mile in 12:56. I'm not impressed with the time, but considering the amount of ground I covered while walking, I think it's ok. I wish I could get under 12 minutes. I always set out with high expectations. I run and it feels great for about 40 seconds. How sad is that? FORTY SECONDS. That's about the amount of time it takes for my sats to drop.
I was telling Paul the other day that running with such low oxygen sats is really hard and I feel like I can't breathe in deep at all. I'll have to video tape it sometime so you can see how much I struggle. Sometimes I get really panicky like I'm never going to be able to catch my breath. I didn't have the same panic while I was jogging, training for my 5K. I think it's the extra exertion that causes the extreme breathlessness that only someone with chronic lung disease can appreciate. It kinda sucks. I miss the days of breathing effortlessly!
Tuesday, November 10, 2009
One Year Checkup
It's been a year since I started this blog. Well, to be exact, it's been 51 weeks.
I started on this exercise trek to improve my FEV1 and today I have the results one year later. Drum roll please:
November 7, 2008
("lung capacity") FEV1 1.43 Liters (45%)
(smaller airways) FEF 25-75% 0.77 Liters (23%)
November 10, 2009
FEV1 1.38 Liters (44%)
FEF 25-75% 0.59 Liters (18%)
Over the course of the year, my highest FEV1 was in May at 1.49 Liters (47%) and my highest FEF 25-75% was in February at 0.85 Liters (25%)
Was it worth it? I don't know. It sure was a heck of a lot of work only to NOT improve one bit. The moral of the story is, I'm a 33 year old Cystic with unrecoverable lung damage. My lung age is 102 years old. I should get a medal for that at least.
I started on this exercise trek to improve my FEV1 and today I have the results one year later. Drum roll please:
November 7, 2008
("lung capacity") FEV1 1.43 Liters (45%)
(smaller airways) FEF 25-75% 0.77 Liters (23%)
November 10, 2009
FEV1 1.38 Liters (44%)
FEF 25-75% 0.59 Liters (18%)
Over the course of the year, my highest FEV1 was in May at 1.49 Liters (47%) and my highest FEF 25-75% was in February at 0.85 Liters (25%)
Was it worth it? I don't know. It sure was a heck of a lot of work only to NOT improve one bit. The moral of the story is, I'm a 33 year old Cystic with unrecoverable lung damage. My lung age is 102 years old. I should get a medal for that at least.
Sunday, November 8, 2009
A Mile a Day, Take Two
Today I ran my mile, just as I promised, even though it would have been so easy not to do it. I figured since I will not get a chance to run while I'm in San Diego, Friday-Sunday, I might as well make the most of my week here before I go. (I can't run in San Diego while I'm visiting friends because I can't bring my tanks on the plane.)
Today I brought my pulse oximeter with me to find out why I felt so ill during the second half of my run yesterday. Turns out the first minute or two my oxygen saturation stays pretty stable. It drops from 100% on 5 liters to 95%. That is totally NORMAL! But then it continues to drop the more and more I push myself. So even though I'm still on 5 liters of O2 my sats decrease to 90% and they stay there. That is really interesting because I'm sucking on a whole lot of oxygen! 5LPM is a massive dose and it's the highest output my tank has.
I may have to re-think/re-organize my plan to continue to run like this. Obviously, running 1 mile on 90% is not going to kill me today, but I may be doing damage to my heart in the long run. The good news is my HR is pretty stead in the 160's which is pretty normal for me, even during my jog. That probably has a lot to do with the oxygen not dipping below 90%. I know from experience once I get into the 80's my HR also jumps into the 180's.
Today's time was better than yesterday at 12 minutes 29 seconds!
I have 4 more days to experiment with this mile a day project. Stay tuned!
Today I brought my pulse oximeter with me to find out why I felt so ill during the second half of my run yesterday. Turns out the first minute or two my oxygen saturation stays pretty stable. It drops from 100% on 5 liters to 95%. That is totally NORMAL! But then it continues to drop the more and more I push myself. So even though I'm still on 5 liters of O2 my sats decrease to 90% and they stay there. That is really interesting because I'm sucking on a whole lot of oxygen! 5LPM is a massive dose and it's the highest output my tank has.
I may have to re-think/re-organize my plan to continue to run like this. Obviously, running 1 mile on 90% is not going to kill me today, but I may be doing damage to my heart in the long run. The good news is my HR is pretty stead in the 160's which is pretty normal for me, even during my jog. That probably has a lot to do with the oxygen not dipping below 90%. I know from experience once I get into the 80's my HR also jumps into the 180's.
Today's time was better than yesterday at 12 minutes 29 seconds!
I have 4 more days to experiment with this mile a day project. Stay tuned!
Thursday, October 15, 2009
Post Race Run 2 & 3
I ran 2 miles on Sunday, October 11 in 28 minutes and 56 seconds. I know! I hardly believe it myself. That was like lightning fast. I had to double check the mileage when I got home. I thought maybe I inadvertently cheated.
Today was a different story. I set out at 11AM after the twins were in school and it was kinda muggy out. Apparently me + humidity = disaster. It was a rough start, then about a half mile in I was ok but after 1 mile I was feeling like I couldn't breathe. I continued until I hit about 1.4 miles and then I gave up.
I swear I was on the verge of having a panic attack. I just felt like the air I was breathing in had no oxygen in it. I mean, frankly, that's pretty normal when I'm running, but I figure it's a mind over matter thing and I huff and puff my way through 2 miles. Today was no dice. I could not make it. I could not force myself to believe everything was ok and I would not suffocate to death so I stopped and walked the rest of the way home. Maybe it was the humidity, maybe it was my mind freaking out. I don't know what it was except that it was hard and I hope it doesn't happen next time!
Today was a different story. I set out at 11AM after the twins were in school and it was kinda muggy out. Apparently me + humidity = disaster. It was a rough start, then about a half mile in I was ok but after 1 mile I was feeling like I couldn't breathe. I continued until I hit about 1.4 miles and then I gave up.
I swear I was on the verge of having a panic attack. I just felt like the air I was breathing in had no oxygen in it. I mean, frankly, that's pretty normal when I'm running, but I figure it's a mind over matter thing and I huff and puff my way through 2 miles. Today was no dice. I could not make it. I could not force myself to believe everything was ok and I would not suffocate to death so I stopped and walked the rest of the way home. Maybe it was the humidity, maybe it was my mind freaking out. I don't know what it was except that it was hard and I hope it doesn't happen next time!
Thursday, October 8, 2009
Post Race Run 1
Dear Running Enthusiasts,
When oh when is running going to be fun and exciting and easy? When oh when am I going to look forward to it, get those mysterious endorphins and all that extra energy? Why oh why do I just want to curl up in a ball and sleep the rest of the day after a short jog? Running has failed me. I've been running for 4 months and it's not easy.
Every.
Single.
Breath.
Every.
Single.
Step.....
... is HARD! The whole time I'm out there I concentrate on drawing the deepest breath possible. But the whole time I'm out there I feel like I'm drowning.
If you have a magic tip, other than a double lung transplant, I'm all ears!
Thanks!
Love,
Tara
Seriously. Today was just as hard as the first day. I went out and pushed myself to try and get a better time. I figured since I don't plan on expanding my distance more than 3.1 miles, I might as well work on my time. I did do better than Sunday, but I didn't blow any records out of the water. I ran 2.0 miles in 30 minutes and 35 seconds. I think I've made that time before. Sometimes, rarely, it feels a teeny tiny bit effortless, but for the most part I dread going, I dread every step while I'm out there and I collapse at the finish line.
When's it supposed to get easier? When will I get increased lung function? I'm stuck at 45% for the last year and it's getting old. Boo.
When oh when is running going to be fun and exciting and easy? When oh when am I going to look forward to it, get those mysterious endorphins and all that extra energy? Why oh why do I just want to curl up in a ball and sleep the rest of the day after a short jog? Running has failed me. I've been running for 4 months and it's not easy.
Every.
Single.
Breath.
Every.
Single.
Step.....
... is HARD! The whole time I'm out there I concentrate on drawing the deepest breath possible. But the whole time I'm out there I feel like I'm drowning.
If you have a magic tip, other than a double lung transplant, I'm all ears!
Thanks!
Love,
Tara
Seriously. Today was just as hard as the first day. I went out and pushed myself to try and get a better time. I figured since I don't plan on expanding my distance more than 3.1 miles, I might as well work on my time. I did do better than Sunday, but I didn't blow any records out of the water. I ran 2.0 miles in 30 minutes and 35 seconds. I think I've made that time before. Sometimes, rarely, it feels a teeny tiny bit effortless, but for the most part I dread going, I dread every step while I'm out there and I collapse at the finish line.
When's it supposed to get easier? When will I get increased lung function? I'm stuck at 45% for the last year and it's getting old. Boo.
Sunday, October 4, 2009
5K Day!
Pictures from the event can be found HERE!
My 5K morning started out at 5:45 AM. It was a sloppy start, as I didn't hear the alarm right away, and then when I did hear it, my arm wasn't working. It was asleep from the shoulder to the elbow, so I could not move it at all! I kept trying and trying and in my fog of bewilderment I could not figure out that all I had to do was sit up and use my other arm.
I got a quick shortened treatment in. Just some xopenex and hypertonic saline with the vest for 25 minutes. After a quick change into my running clothes and a small bowl of cereal, we were out the door at 6:30AM! Tom and Abby were fast asleep in their beds while Auntie Rachel spent the night and agreed to babysit for us. It was a huge help! I'm not sure Tom and Abby would have enjoyed the 51 degree temperature or the pre-dawn hour.
While we were lined up waiting for the 5K start we bumped into Sacramento's mayor, former NBA player, Kevin Johnson. I asked him if he would take a photo with us and he obliged! Pictures from the event can be found HERE!
Our race started a few minutes late, but eventually we were off! My sister, Dani, and my college buddy, Tamiko, ran my pace with me. Part of the time they could actually walk and still keep up with my 16 minute mile pace. Tamiko would run ahead from time to time to snap photos of me during the race. I can't wait to see them.
When I saw the 1 mile mark, I was thinking, "that's it?! We've only gone ONE mile?" But on we trudged. Passing some walkers, being passed by other walkers. Eventually my legs got into a groove and I ran the whole way! My right hip (bursitis) was bothering me, but it was not debilitating, so I didn't have to walk. It's probably going to be more inflamed and painful tomorrow.
For the last tenth of a mile I was able to speed up for a strong finish. Running through the crowds of people cheering me on was amazing! First I saw the twins' preschool teachers, Miss Mim and Miss Pahla. Then I was surprised to find another face in the crowd cheering me on, Linda, a respiratory therapist I met in 1984 at Cystic Fibrosis summer camp. I did run into her around town once, so I know she's local and it was great to hear her yelling my name! Then came the support group of friends. Paul was there (he finished way before me) and Laura and Jen brought signs and streamers! And lastly there were my in-laws right as I was crossing the finish line. They came out at 7:30 in the morning and stood in the freezing cold to watch me run.
What a day!
Laura, Jen, Paul and I went to Fox and Goose for a big celebratory breakfast afterwards. I came home and tried to be functional. I gave up around 1PM and retired to my room. Much to my surprise I woke up around 4:30! Boy was I wiped out from the longest week in history with 2 birthday parties planned and attended, topped off by a 5K this morning.
I ended up beating my goal by 3 seconds per mile. I was aiming for 16 minute miles, and I pulled down 15:57 per mile. My total running time was 49:26. I came in 766th out of 924 participants in the 5K and I believe I was the only one wearing an oxygen tank! Paul did much better, and even beat the former NBA player, now mayor of Sacramento, Kevin Johnson. Paul placed 96th overall and finished the race in 25:51.
My 5K morning started out at 5:45 AM. It was a sloppy start, as I didn't hear the alarm right away, and then when I did hear it, my arm wasn't working. It was asleep from the shoulder to the elbow, so I could not move it at all! I kept trying and trying and in my fog of bewilderment I could not figure out that all I had to do was sit up and use my other arm.
I got a quick shortened treatment in. Just some xopenex and hypertonic saline with the vest for 25 minutes. After a quick change into my running clothes and a small bowl of cereal, we were out the door at 6:30AM! Tom and Abby were fast asleep in their beds while Auntie Rachel spent the night and agreed to babysit for us. It was a huge help! I'm not sure Tom and Abby would have enjoyed the 51 degree temperature or the pre-dawn hour.
While we were lined up waiting for the 5K start we bumped into Sacramento's mayor, former NBA player, Kevin Johnson. I asked him if he would take a photo with us and he obliged! Pictures from the event can be found HERE!
Our race started a few minutes late, but eventually we were off! My sister, Dani, and my college buddy, Tamiko, ran my pace with me. Part of the time they could actually walk and still keep up with my 16 minute mile pace. Tamiko would run ahead from time to time to snap photos of me during the race. I can't wait to see them.
When I saw the 1 mile mark, I was thinking, "that's it?! We've only gone ONE mile?" But on we trudged. Passing some walkers, being passed by other walkers. Eventually my legs got into a groove and I ran the whole way! My right hip (bursitis) was bothering me, but it was not debilitating, so I didn't have to walk. It's probably going to be more inflamed and painful tomorrow.
For the last tenth of a mile I was able to speed up for a strong finish. Running through the crowds of people cheering me on was amazing! First I saw the twins' preschool teachers, Miss Mim and Miss Pahla. Then I was surprised to find another face in the crowd cheering me on, Linda, a respiratory therapist I met in 1984 at Cystic Fibrosis summer camp. I did run into her around town once, so I know she's local and it was great to hear her yelling my name! Then came the support group of friends. Paul was there (he finished way before me) and Laura and Jen brought signs and streamers! And lastly there were my in-laws right as I was crossing the finish line. They came out at 7:30 in the morning and stood in the freezing cold to watch me run.
What a day!
Laura, Jen, Paul and I went to Fox and Goose for a big celebratory breakfast afterwards. I came home and tried to be functional. I gave up around 1PM and retired to my room. Much to my surprise I woke up around 4:30! Boy was I wiped out from the longest week in history with 2 birthday parties planned and attended, topped off by a 5K this morning.
I ended up beating my goal by 3 seconds per mile. I was aiming for 16 minute miles, and I pulled down 15:57 per mile. My total running time was 49:26. I came in 766th out of 924 participants in the 5K and I believe I was the only one wearing an oxygen tank! Paul did much better, and even beat the former NBA player, now mayor of Sacramento, Kevin Johnson. Paul placed 96th overall and finished the race in 25:51.
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