I figured this might be the best way to give everyone an update, especially after I heard how much exposure my previous post received.
Today I went back to Barnes for my checkup after that last appointment. It just struck me how different the two days were weather-wise. Talk about a crazy winter: last week when we went, it was snowy, wet, and cold. Today, as I type this, I am sitting on the porch basking in the sun, enjoying the 70 degree weather.
Unfortunately, I can't say that my appointments had the same extreme differences. Today I was slightly better, though not nearly as much as we'd hoped; let's call it a mostly cloudy day in the 40s as compared to last week's snow. As I said before, my numbers are usually around 45-50 when I come off of IV antibiotics. Today, I was at 35%. Yes, that's an improvement over 29, but not by much. I still haven't broke the 40s. So what does this mean?
Well, it means a few things. One, I will stay on one of my medicines for the time being. Apparently they have some patients who just stay on this medicine for life, so it is not uncommon. They want to see me in a month again, versus the normal three months, to check how things are going. I also am going to get back to exercising so I can try to get my lung functions back up that way too. My "exercising" is not really much of anything at this point, but it gets me huffin' and puffin' which is what we want.
In the 'long-term' I will probably be back in the hospital before long since I didn't get a whole lot better this time. However, when that happens, my doctor wants to hook me up with an allergist and go through the desensitization process for some of these medicines I am "allergic" to. I am "allergic" to quite a few medicines, so our choices are limited. This time, with the germs I have in my system, we could not use the best meds because I am allergic to them. Some of these allergies are old as well, so there is a chance I have outgrown them, which is why keep saying "allergic" in quotes. So anyways, in order to avoid the 'half-ass better' state I'm in right now, we are going to find out what I truly can and can't tolerate. I know this will be a bit of a pain, and probably uncomfortable at times, but I'm ready to do it. I don't want to face another hospitalization like this one again where I did so much and gained so little.
For now, though, I am considering myself no longer sick, per se. I don't know what came over me, but I am not accepting this for the long term. I know that I will get back to where I was, and hopefully even better if this exercising starts to work out a few months down the road. But in the mean time, I am at peace with where I'm at; I'm not worse, I need to keep working on it, and I guess it's just not in the cards for me right now.
I know many of you are praying for me, which literally brings tears to my eyes when I try to grapple with just how many people are thinking of me. I thank you. It means very, very much.
Thursday, February 23, 2012
Monday, February 13, 2012
Life Is Precious
It's days like today where you find yourself in a whirlwind of emotions and slightly intertwined lives, leaving you to ponder the meaning of it all.
I give you three tales of life, in mostly chronological order as they happened today.
The first is a story from this morning. This morning's commute was not quite normal in that it snowed the first "major" snow of this season. Many people ventured out, some people turned around to head back home after deciding it was too slick (like me), and some people got stuck in traffic on the interstate. The interstate was shut down this morning due to an accident. A man in a tractor trailer began to swerve after a woman tried to merge into his lane, he lost control his vehicle, and crashed into the concrete pillars in the median of the highway that hold up an overpass. Jarrod was the first person to help this man.
Jarrod said he was over a quarter of a mile away when he saw it happen, could not believe anyone else hadn't stopped, so he did. He pulled over and headed over to the truck where he found the driver gasping for air and unconscious. He did what he could to help the man, and eventually more people stopped to help too. One of them was a doctor, so at that point Jarrod said he got out of the way so the doctor could take over. By the time Jarrod left the scene, the driver had stopped breathing.
First of all, I find it greatly brave that he decided to be the first person to stop and check on the man. I don't want to go on about that, but I just find it courageous. Secondly, it made me take pause and think 'That could have been him.' We all are slammed with moments like this from time to time; you start thinking about how you didn't hug them long enough, kiss them enough, or said "I love you" with enough meaning, had this been their last day. In an instant, this man was on the edge of life, and it feels odd knowing that my husband and a handful of other people were some of the last people he ever saw. I have no idea who he was, but my thoughts are with his unknown family and the sudden loss they've been dealt.
The second tale is from this afternoon. At my doctor's follow-up, I saw a guy in the waiting room for PFTs who smelled like an ashtray. I almost coughed just from breathing the air he stirred up as he walked by; it was pretty bad. Later, when I was done with my test and in the waiting room for my doctor, he was there too. He walked out of the doctor office, into the waiting room, and said "Well, they told me to quit smoking cigarettes," threw away a paper they gave to him about quitting, and laughed.
Now, here is a guy who most likely has a genetic, debilitating lung disease (I'm pretty positive they only see CF patients on Mondays), and he SMOKES!? I had heard from a few people there, in clinic and in the hospital, that there was a patient (or two) that smoked. It obviously baffles everyone. Why a person would choose to smoke, on top of having a lung disease, is beyond my level of comprehension. You would truly be speeding up death by at least 150%. This man's complete disregard for life astounds me. He must not value much of anything. And the fact that he laughed at the thought of quitting smoking just adds insult, if you ask me.
The third story is my own. I did not have a good checkup today. My numbers were the same as they were when I went in to the hospital, in fact slightly worse. And to explain that: usually my lung functions hover around 48-50, which is considered my baseline. But today, my numbers ranged from 27 to 34. What this means, friends, is that I am using 34% of my lungs. Yes, one third. The rest of my airways are either blocked, clogged, damaged, scarred, or just plain unusable right now. I've done two weeks and two days of antibiotics and gained nothing. I'm out of breath sitting still, I can barely get around, I have random coughing fits that tire me out to the point of falling over, and the good effects after doing a treatment barely last me 10 minutes. I feel, almost, as if I'm beginning the fight for my life. I'm not ready for this to be the state I will always be in from here on out. I've done everything the doctors asked me to do, but it hasn't helped. Now, I have 1.5 weeks more of antibiotics, and if that doesn't do the trick, then we are truly up a creek.
So maybe this blog does not make much sense, but to me I found these three things oddly connected today. One individual lost his life, one doesn't care about his life, and one is trying to get her life back.
How complex life is. How trying.
How precious.
I give you three tales of life, in mostly chronological order as they happened today.
The first is a story from this morning. This morning's commute was not quite normal in that it snowed the first "major" snow of this season. Many people ventured out, some people turned around to head back home after deciding it was too slick (like me), and some people got stuck in traffic on the interstate. The interstate was shut down this morning due to an accident. A man in a tractor trailer began to swerve after a woman tried to merge into his lane, he lost control his vehicle, and crashed into the concrete pillars in the median of the highway that hold up an overpass. Jarrod was the first person to help this man.
Jarrod said he was over a quarter of a mile away when he saw it happen, could not believe anyone else hadn't stopped, so he did. He pulled over and headed over to the truck where he found the driver gasping for air and unconscious. He did what he could to help the man, and eventually more people stopped to help too. One of them was a doctor, so at that point Jarrod said he got out of the way so the doctor could take over. By the time Jarrod left the scene, the driver had stopped breathing.
First of all, I find it greatly brave that he decided to be the first person to stop and check on the man. I don't want to go on about that, but I just find it courageous. Secondly, it made me take pause and think 'That could have been him.' We all are slammed with moments like this from time to time; you start thinking about how you didn't hug them long enough, kiss them enough, or said "I love you" with enough meaning, had this been their last day. In an instant, this man was on the edge of life, and it feels odd knowing that my husband and a handful of other people were some of the last people he ever saw. I have no idea who he was, but my thoughts are with his unknown family and the sudden loss they've been dealt.
The second tale is from this afternoon. At my doctor's follow-up, I saw a guy in the waiting room for PFTs who smelled like an ashtray. I almost coughed just from breathing the air he stirred up as he walked by; it was pretty bad. Later, when I was done with my test and in the waiting room for my doctor, he was there too. He walked out of the doctor office, into the waiting room, and said "Well, they told me to quit smoking cigarettes," threw away a paper they gave to him about quitting, and laughed.
Now, here is a guy who most likely has a genetic, debilitating lung disease (I'm pretty positive they only see CF patients on Mondays), and he SMOKES!? I had heard from a few people there, in clinic and in the hospital, that there was a patient (or two) that smoked. It obviously baffles everyone. Why a person would choose to smoke, on top of having a lung disease, is beyond my level of comprehension. You would truly be speeding up death by at least 150%. This man's complete disregard for life astounds me. He must not value much of anything. And the fact that he laughed at the thought of quitting smoking just adds insult, if you ask me.
The third story is my own. I did not have a good checkup today. My numbers were the same as they were when I went in to the hospital, in fact slightly worse. And to explain that: usually my lung functions hover around 48-50, which is considered my baseline. But today, my numbers ranged from 27 to 34. What this means, friends, is that I am using 34% of my lungs. Yes, one third. The rest of my airways are either blocked, clogged, damaged, scarred, or just plain unusable right now. I've done two weeks and two days of antibiotics and gained nothing. I'm out of breath sitting still, I can barely get around, I have random coughing fits that tire me out to the point of falling over, and the good effects after doing a treatment barely last me 10 minutes. I feel, almost, as if I'm beginning the fight for my life. I'm not ready for this to be the state I will always be in from here on out. I've done everything the doctors asked me to do, but it hasn't helped. Now, I have 1.5 weeks more of antibiotics, and if that doesn't do the trick, then we are truly up a creek.
So maybe this blog does not make much sense, but to me I found these three things oddly connected today. One individual lost his life, one doesn't care about his life, and one is trying to get her life back.
How complex life is. How trying.
How precious.
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