Pulmonary Rehab Day 43.
One of the CO2 buildup problems I experience when exercising now is tunnel vision. Maybe this isn't tunnel vision as other people have experienced it. Certainly not like movies and television depict it. Actually, I still see everything my eyes take in; but my brain ceases to process the more peripheral signals meaningfully. It's as if the translation part between sensing and understanding has been shut off. This "narrows" my perception of the world to only what is directly in front of me: either the water fountain across from Bike 2, or the green cork of the track ahead of me. Everything outside of a very central focus starts to lose meaning and can even become unsynced from reality; the picture at the edges is about a half-second behind the picture in the center, and blurs somewhat when I move my head. My other senses are unaffected as of yet, and they verify that my sight is not synced up. It has led to some terrifically awful moments where I thought I was seeing something other than what I was actually seeing.
So how do I get rid of this? I stop. I sit. I breathe, concentrating on pursed-lip breathing. In a couple minutes, the tunnel vision gets blown out, though there are other CO2 effects that take 20 to 30 minutes to be relieved of.
It strikes me that this physical sensation during exercise is analogous to my overall experience here at Duke. Of what I can see or be told, my perception of it all may in fact be skewed, with only a small part being in perfect comprehension. Furthermore, I'm also aware that I'm losing emotive connection with the rest of my life. The import I previously assigned to house, home, job, friends, pets, New York.... it is all becoming like a dream. Like a life I read about on somebody's blog. I've only been here two months and already the meaning of the on-hold portion of my life is becoming warped and suppressed, leaving me to focus ever-more on what's in front of me.
Blowing out *this* form of tunnel vision means asking questions, weighing the answers, comparing patients' stories. It means staying in touch with old friends in New York and planning for a real future after transplant. It means continuing to make new acquaintances here with people whose own stories put mine in perspective; for they blow out the central focus and bring clarity to more of what's around me.
Today, I was running late and missed my usual morning floor class. So I returned to rehab to attend the 4:30 floor class. There, I made the acquaintance of three sweet old ladies. Other than the instructor, it was just me and them in the building by the end of class. Now, I'd seen them before, but hadn't had a chance to even introduce myself, much less socialize. It turns out these three have been here a long, long time. They each have high antibodies, so their waits for lungs are so far anywhere from 5 months to 18 months. This is long, in Duke terms. They are also three of the most patient, cheerful women I've met in rehab. And like Macbeth asking for knowledge of the three witches, I asked how they can stand it - seeing patient after patient come and go while they wait. They pointed out that they get to know people and are genuinely happy to see them transplanted and move on. They mentioned every day they can go to rehab is a good day, really; but that they've kind of stopped believing their phone will ever ring. I explained my 10-month wait in NY and feeling the same way.
They assured me as I was leaving that I'd be Thane of Cawdor. No! They said "you'll get transplanted soon!" And I walked out into the drizzly cold with an expanded awareness of the state of things. My world somewhat redefined, made clearer; my own place in it more firmly located and sized.
Tonight, I was reminded that I suffer tunnel vision only by my own doing, and that I have the power to blow that out. By sitting. By breathing. And by talking to new friends.
Showing posts with label CO2 buildup. Show all posts
Showing posts with label CO2 buildup. Show all posts
December 9, 2013
December 3, 2013
40 days, part I
Pulmonary Rehab Day 40. I am no Moses, and these people are not the Israelites.
As I was leaving rehab today, I looked over the space, filled with a fairly large crowd of people, all doing their thing; going through those motions that they will have to go through indefinitely. Some are pre-transplant, some are post, but they'll all be in rehab until released, renewed, or dead. There is definitely a "wandering in the desert" feel to it sometimes. I wish I could work a miracle and lead all of these people out of there and into the sunlight without need of oxygen, g-tubes, or walkers.
The number 40 has a prominent place in the bible. It rained for 40 days and nights. And Noah waited another 40 to open the ark. Moses was on the mountain for 40 days before coming down with the commandments. Goliath terrorized the Israelites for 40 days before David took care of business. Jesus fasted 40 days in the wilderness. Etc. And also, the Israelites wandered 40 years in the desert before entering the promised land w/out recrimination.
I do not know the Bible well, nor do I particularly study religion. I just find the theme interesting: that after 40 days, something good often comes to those who have been patient.
Today was my 40th session of pulmonary rehab. Do I dare hope for a call tonight? Is this the night Duke's David slays CF's Goliath? Alas, I have no more hope of it this night than I had last night, or will have tomorrow night. Indeed, I have evidence my wait may be a great while longer.
As I was leaving rehab today, I looked over the space, filled with a fairly large crowd of people, all doing their thing; going through those motions that they will have to go through indefinitely. Some are pre-transplant, some are post, but they'll all be in rehab until released, renewed, or dead. There is definitely a "wandering in the desert" feel to it sometimes. I wish I could work a miracle and lead all of these people out of there and into the sunlight without need of oxygen, g-tubes, or walkers.
The number 40 has a prominent place in the bible. It rained for 40 days and nights. And Noah waited another 40 to open the ark. Moses was on the mountain for 40 days before coming down with the commandments. Goliath terrorized the Israelites for 40 days before David took care of business. Jesus fasted 40 days in the wilderness. Etc. And also, the Israelites wandered 40 years in the desert before entering the promised land w/out recrimination.
I do not know the Bible well, nor do I particularly study religion. I just find the theme interesting: that after 40 days, something good often comes to those who have been patient.
Today was my 40th session of pulmonary rehab. Do I dare hope for a call tonight? Is this the night Duke's David slays CF's Goliath? Alas, I have no more hope of it this night than I had last night, or will have tomorrow night. Indeed, I have evidence my wait may be a great while longer.
November 21, 2013
Having Faith
Pulmonary Rehab Day 33: Should've started with a better breakfast.
Went to rehab at 11:00 only to find out the change in scheduling that had been benefiting me was redacted, leaving me with scheduling problems again. Then I had to abort floor class (yoga today) so I could jet over to the hospital at noon for what I thought would be a short endocrinologist consult. We didn't leave the hospital until 3:00! And walking to and from the clinics with my portable tank, it has become clear that I now need more oxygen than the pulse regulator can provide; I'm going to need to move to the constant flow regulator and carry extra tanks. It's the CO2 buildup that's the real culprit, not just oxygen sats.
I had just enough time to get back to rehab, rush through weights and a 20 minute walk, and sneak into seminar a few minutes late. Then sneak out again to hook up an IV and sneak back in again. My first good meal of the day came at 6:15!! And now I end the day with some harsh criticism coming out about the windows at Macy's on State, handiwork I'm largely responsible for (though I can't say I'm surprised). I'd like to say I can finish therapy now and the day will be over, but I have another IV in an hour and another after that at 11:30. There have many blows to my psyche today; and what I wouldn't give for about 12 straight uninterrupted hours of sleep right about now.
And yet ... still my thoughts are with my other NY-Durham "family", my "cysters" Denise and Piper. I'm relieved Denise is discharged and gets to sleep in her own bed tonight. Her CF has been presenting her with complication after complication. If I think I am fed up with these old lungs, I can only imagine how over it she is! She bears up through it all with the fortitude of a Spartan; even I don't have that kind of strength.
Piper's call from NY turned out to be an exhausting dry run for her, disappointing to her and her family, disappointing to her friends. While I have the utmost confidence she'll get her double lung transplant here at Duke, I understand it is so easy to get discouraged when you're sucking wind w/ every breath and there's just no way out but forward. I understand because I'm living that same inability to breathe.
The light at the end of the tunnel sometimes looks very dim. But the light is yet on and progress is being made. And nobody I know from my scant eight weeks here in Durham has yet died while waiting for lungs. In fact, one of my first pre-transplant rehab friends, Rodney, showed up today for his first workout as a post-transplant. It was, I kid you not, like seeing a pillar of fire appear in the desert. The sight of this man walking tall and proud and without oxygen was so beautiful I wanted to weep. This! Is! Happening! I am not a religious man, but I am learning the meaning of faith.
Went to rehab at 11:00 only to find out the change in scheduling that had been benefiting me was redacted, leaving me with scheduling problems again. Then I had to abort floor class (yoga today) so I could jet over to the hospital at noon for what I thought would be a short endocrinologist consult. We didn't leave the hospital until 3:00! And walking to and from the clinics with my portable tank, it has become clear that I now need more oxygen than the pulse regulator can provide; I'm going to need to move to the constant flow regulator and carry extra tanks. It's the CO2 buildup that's the real culprit, not just oxygen sats.
I had just enough time to get back to rehab, rush through weights and a 20 minute walk, and sneak into seminar a few minutes late. Then sneak out again to hook up an IV and sneak back in again. My first good meal of the day came at 6:15!! And now I end the day with some harsh criticism coming out about the windows at Macy's on State, handiwork I'm largely responsible for (though I can't say I'm surprised). I'd like to say I can finish therapy now and the day will be over, but I have another IV in an hour and another after that at 11:30. There have many blows to my psyche today; and what I wouldn't give for about 12 straight uninterrupted hours of sleep right about now.
And yet ... still my thoughts are with my other NY-Durham "family", my "cysters" Denise and Piper. I'm relieved Denise is discharged and gets to sleep in her own bed tonight. Her CF has been presenting her with complication after complication. If I think I am fed up with these old lungs, I can only imagine how over it she is! She bears up through it all with the fortitude of a Spartan; even I don't have that kind of strength.
Piper's call from NY turned out to be an exhausting dry run for her, disappointing to her and her family, disappointing to her friends. While I have the utmost confidence she'll get her double lung transplant here at Duke, I understand it is so easy to get discouraged when you're sucking wind w/ every breath and there's just no way out but forward. I understand because I'm living that same inability to breathe.
The light at the end of the tunnel sometimes looks very dim. But the light is yet on and progress is being made. And nobody I know from my scant eight weeks here in Durham has yet died while waiting for lungs. In fact, one of my first pre-transplant rehab friends, Rodney, showed up today for his first workout as a post-transplant. It was, I kid you not, like seeing a pillar of fire appear in the desert. The sight of this man walking tall and proud and without oxygen was so beautiful I wanted to weep. This! Is! Happening! I am not a religious man, but I am learning the meaning of faith.
November 15, 2013
The beginning of the end
Pulmonary Rehab Day 29, end of Week 7.
In my writings and when talking to doctors, I've often used a slope metaphor for what's going on with me. I've been likening my decline to sliding off a gravelly slope; concerned that a steep and abrupt cliff awaits me that that will spell my end. Worried that the system can't respond fast enough to a sudden, steep decline in lung function to save my life. Well, Cris meet cliff. Cliff, Cris.
Let's back up to last week, when I had a hard time Thursday and Friday and throughout the weekend with tightness, hyperinflation, and breathlessness. Chest congestion increasing. Hyper-reactive lungs closing up when I inhale the medicines that are supposed to be helping. But Monday and Tuesday were an improvement and I did well at rehab. But back again to having a hard time mid-week and today.
The newest wrinkle now, it seems, is hypercapnia, or CO2 buildup. This is difficult to measure and difficult to manage. In clinic, they'll pull an ABG - arterial blood gas - and one of the results is a measure of how much CO2 one retains. Only recently did that number go above normal for me. Yesterday, though, there was a quite a jump. (To 50...you can look up normative values here.) My doctor didn't like that and rattled the bipap saber a bit, though I think we'll hold off a couple weeks in hopes I get a transplant first! (I'm still sleeping well, after all, and oxygen sats are good all night.)
But you can't measure CO2 levels as you exercise, not very well; not with simple, practical means. And so I'm left to feeling it out. CO2 buildup causes a variety of effects, some of which I experience and some of which I don't. I don't really get CO2 headaches, for instance. But if you've ever held your breath to the point of blacking out, you may be familiar with how the world starts to go dark at the edges and vision doesn't stay synced with head movement. There's also a feeling of breathlessness, of course, as CO2 levels are what drive our breathing mechanism. I get mild tingling in my extremities as well as tremors. All the while, my O2 can be just fine. But any real exertion - my normal workout pace on the bike or walk for instance, or putting in a good set on the weight machine - kicks my CO2 levels up and I'm forced to slow down, even stop. And rest. And recovery has been taking longer and longer.
So my lungs have progressed to that point: where not only don't I have much volume, but also don't have effective gas-exchange properties. This is a hard limit - there is no training to get past this. I must continue rehab to the best of my ability and I must patiently await transplant. But if I needed any clearer sign that these lungs are done, it's just been delivered.
Now, my current troubles aren't *all* about a sudden jump in CO2 retention. I do have a lung infection brewing. My doctor wanted to wait a week and see how I feel before ordering IV antibiotics, but I pointed to my PFTs (21% FEV1, 60% FVC) and noted that my CF pulmonologist in NY would not wait. So we ordered up some IVs and I've had my first dose this evening already. I am hopeful that the IVs will result in some better happenings at rehab and bridge me over 'til transplant.
A person can go a long time on lungs that are damaged, as long as they're still clearing out CO2 and bringing in O2, enough for the rest of the body. But...now mine can't. I'm having to retard even my supervised, prescribed exercise. It is a hard thing to finally look this in the face. I recall a moment back in August when I was watching my doctor type notes into the computer during our consult and he just routinely tapped out "end stage cystic fibrosis" and "respiratory failure". I was shocked. I hadn't applied those labels to myself yet. But this CO2 thing makes those labels relevant and vivid. It's like seeing but not seeing those signs at the Grand Canyon: Danger. Steep Drop. Stay Back From Edge. You don't think they apply to you, until you are scrambling at cliff's edge to keep from going over.
Tonight I'm reminded of that edge; because I'm clinging to it by my fingertips.
In my writings and when talking to doctors, I've often used a slope metaphor for what's going on with me. I've been likening my decline to sliding off a gravelly slope; concerned that a steep and abrupt cliff awaits me that that will spell my end. Worried that the system can't respond fast enough to a sudden, steep decline in lung function to save my life. Well, Cris meet cliff. Cliff, Cris.
Let's back up to last week, when I had a hard time Thursday and Friday and throughout the weekend with tightness, hyperinflation, and breathlessness. Chest congestion increasing. Hyper-reactive lungs closing up when I inhale the medicines that are supposed to be helping. But Monday and Tuesday were an improvement and I did well at rehab. But back again to having a hard time mid-week and today.
The newest wrinkle now, it seems, is hypercapnia, or CO2 buildup. This is difficult to measure and difficult to manage. In clinic, they'll pull an ABG - arterial blood gas - and one of the results is a measure of how much CO2 one retains. Only recently did that number go above normal for me. Yesterday, though, there was a quite a jump. (To 50...you can look up normative values here.) My doctor didn't like that and rattled the bipap saber a bit, though I think we'll hold off a couple weeks in hopes I get a transplant first! (I'm still sleeping well, after all, and oxygen sats are good all night.)
But you can't measure CO2 levels as you exercise, not very well; not with simple, practical means. And so I'm left to feeling it out. CO2 buildup causes a variety of effects, some of which I experience and some of which I don't. I don't really get CO2 headaches, for instance. But if you've ever held your breath to the point of blacking out, you may be familiar with how the world starts to go dark at the edges and vision doesn't stay synced with head movement. There's also a feeling of breathlessness, of course, as CO2 levels are what drive our breathing mechanism. I get mild tingling in my extremities as well as tremors. All the while, my O2 can be just fine. But any real exertion - my normal workout pace on the bike or walk for instance, or putting in a good set on the weight machine - kicks my CO2 levels up and I'm forced to slow down, even stop. And rest. And recovery has been taking longer and longer.
So my lungs have progressed to that point: where not only don't I have much volume, but also don't have effective gas-exchange properties. This is a hard limit - there is no training to get past this. I must continue rehab to the best of my ability and I must patiently await transplant. But if I needed any clearer sign that these lungs are done, it's just been delivered.
Now, my current troubles aren't *all* about a sudden jump in CO2 retention. I do have a lung infection brewing. My doctor wanted to wait a week and see how I feel before ordering IV antibiotics, but I pointed to my PFTs (21% FEV1, 60% FVC) and noted that my CF pulmonologist in NY would not wait. So we ordered up some IVs and I've had my first dose this evening already. I am hopeful that the IVs will result in some better happenings at rehab and bridge me over 'til transplant.
A person can go a long time on lungs that are damaged, as long as they're still clearing out CO2 and bringing in O2, enough for the rest of the body. But...now mine can't. I'm having to retard even my supervised, prescribed exercise. It is a hard thing to finally look this in the face. I recall a moment back in August when I was watching my doctor type notes into the computer during our consult and he just routinely tapped out "end stage cystic fibrosis" and "respiratory failure". I was shocked. I hadn't applied those labels to myself yet. But this CO2 thing makes those labels relevant and vivid. It's like seeing but not seeing those signs at the Grand Canyon: Danger. Steep Drop. Stay Back From Edge. You don't think they apply to you, until you are scrambling at cliff's edge to keep from going over.
Tonight I'm reminded of that edge; because I'm clinging to it by my fingertips.
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