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.
December 9, 2013
December 8, 2013
The Infectious Disease Emperor Has No Clothes!
The following are some thoughts that I first put down in an email to a friend. It was precipitated by a mistake on my part. A small mistake and one that has a 99.99% chance of being of no consequence. But a mistake nonetheless: I forgot to change gown and gloves.
The incident is that I arrived at Duke 7800, gowned, masked, and gloved, and dropped off a tray of coffee and dropped my coat in one patient's room, literally not physically touching anything - consciously not doing so. Then I went down the hall to another patient's room and chatted with her. I should have changed the gown and gloves, according to protocol. (On return, you can bet I did everything correctly. Not wanting to rock the boat here.) While I feel that in this one case there was zero chance of transfer of any germs, I have to admit I broke not only the hospital's protocol, but my own.
Hell, I'm cautious because I'm protecting myself as well! I don't want to pick up any germs from my two friends and make my precarious position on the list untenable. So I'll make sure the protocols aren't broken again.
What's frustrating is that I don't feel like these isolation protocols go far enough. The CF patients are in more danger from the doctors on rounds and the food service people than they are from me, I think. The established precautions deal with gowns and gloves - but aren't they for naught if there is no change of mask as well?
Not that I've seen any of the staff wearing those! Call me ignorant or uninformed, but if you've got a patient on droplet protocol, YOU should be wearing a mask when tending to them! Your own breath can be a vector for disease transmisison, especially if you are in close contact giving insulin shots, listening to chests with stethoscopes, etc. And pants and footwear aren't isolated, either. The gowns reach to the knees on most people, but that's all. And the pens and hair-touching... Am I crazy here?
Having worked in pristine white Christmas windows during setup, I'm coming to realize that I have a keener awareness of how contamination spreads than most of the medical community, because I've seen it in a visual form, both in terms of dirt tracked in, wet paint transferred from surface to surface, and glitter tracked literally everywhere. In 2011, I lit a set of windows for Macy's that were generally squeaky clean white, with portion covered in various kinds of fake snow or colored glitter. We are extremely careful to use clothing protection, booties, gloves, etc. We are extremely careful handling anything with glitter glued to it. And yet, there was a single set piece using a particular red glitter that I was exposed to ONCE. And six months later was finding that glitter AT HOME. Theoretically, it shouldn't have been possible. But the proof was before me.
If I could get Infectious Disease at Duke to come load in white, glittery scenery for a week, they'd be horrified at how lax their infection control protocols really are. And don't get me started on what I've seen so far of the horrific infection control gaps in ICU and step down, judging from pictures and anecdotes of recently transplanted friends. I'll post soon enough on my own first-hand experiences in that realm, and with more surety.
And then I'll probably write a long and angry letter to hospital administration. Why? Because it is apparent to me that Duke Infectious Disease cherry-picks what protocols to follow, especially as concerns CFers. The result is highly convenient for the staff, and pays lip-service to infection control, but is largely smoke and mirrors. Their wards aren't set up correctly to provide the infection control required, so they go at it with what could be termed half-measures. And it is simply not valid to have good isolation protocols on 7800 for CFers and then ignore it all in clinic and pulmonary rehab. I wonder if the reason Duke Transplant doesn't work directly with Duke's CF center (!!) is partly because they can't handle the CFF guidelines for patient isolation? The one time I asked, I had sunshine blown up my ass. "Well, our Infectious Disease department doesn't feel those precautions are entirely necessary..." Oh, really? With a patient population seeking lung transplant BECAUSE intractable infection has destroyed our lungs, you don't feel you should work a little more on at least requiring masks on all your CF patients in clinic and in rehab? It's fucking nuts!
Sorry. But this just hits one of my most sensitive buttons. And if you ever come visit me, you'll find me behind a mask whenever there's another CFer in the vicinity. It just makes sense. If Duke sees sense in changing gowns and gloves between every room, then what is their hangup regarding masks?
The incident is that I arrived at Duke 7800, gowned, masked, and gloved, and dropped off a tray of coffee and dropped my coat in one patient's room, literally not physically touching anything - consciously not doing so. Then I went down the hall to another patient's room and chatted with her. I should have changed the gown and gloves, according to protocol. (On return, you can bet I did everything correctly. Not wanting to rock the boat here.) While I feel that in this one case there was zero chance of transfer of any germs, I have to admit I broke not only the hospital's protocol, but my own.
Hell, I'm cautious because I'm protecting myself as well! I don't want to pick up any germs from my two friends and make my precarious position on the list untenable. So I'll make sure the protocols aren't broken again.
What's frustrating is that I don't feel like these isolation protocols go far enough. The CF patients are in more danger from the doctors on rounds and the food service people than they are from me, I think. The established precautions deal with gowns and gloves - but aren't they for naught if there is no change of mask as well?
Not that I've seen any of the staff wearing those! Call me ignorant or uninformed, but if you've got a patient on droplet protocol, YOU should be wearing a mask when tending to them! Your own breath can be a vector for disease transmisison, especially if you are in close contact giving insulin shots, listening to chests with stethoscopes, etc. And pants and footwear aren't isolated, either. The gowns reach to the knees on most people, but that's all. And the pens and hair-touching... Am I crazy here?
Having worked in pristine white Christmas windows during setup, I'm coming to realize that I have a keener awareness of how contamination spreads than most of the medical community, because I've seen it in a visual form, both in terms of dirt tracked in, wet paint transferred from surface to surface, and glitter tracked literally everywhere. In 2011, I lit a set of windows for Macy's that were generally squeaky clean white, with portion covered in various kinds of fake snow or colored glitter. We are extremely careful to use clothing protection, booties, gloves, etc. We are extremely careful handling anything with glitter glued to it. And yet, there was a single set piece using a particular red glitter that I was exposed to ONCE. And six months later was finding that glitter AT HOME. Theoretically, it shouldn't have been possible. But the proof was before me.
If I could get Infectious Disease at Duke to come load in white, glittery scenery for a week, they'd be horrified at how lax their infection control protocols really are. And don't get me started on what I've seen so far of the horrific infection control gaps in ICU and step down, judging from pictures and anecdotes of recently transplanted friends. I'll post soon enough on my own first-hand experiences in that realm, and with more surety.
And then I'll probably write a long and angry letter to hospital administration. Why? Because it is apparent to me that Duke Infectious Disease cherry-picks what protocols to follow, especially as concerns CFers. The result is highly convenient for the staff, and pays lip-service to infection control, but is largely smoke and mirrors. Their wards aren't set up correctly to provide the infection control required, so they go at it with what could be termed half-measures. And it is simply not valid to have good isolation protocols on 7800 for CFers and then ignore it all in clinic and pulmonary rehab. I wonder if the reason Duke Transplant doesn't work directly with Duke's CF center (!!) is partly because they can't handle the CFF guidelines for patient isolation? The one time I asked, I had sunshine blown up my ass. "Well, our Infectious Disease department doesn't feel those precautions are entirely necessary..." Oh, really? With a patient population seeking lung transplant BECAUSE intractable infection has destroyed our lungs, you don't feel you should work a little more on at least requiring masks on all your CF patients in clinic and in rehab? It's fucking nuts!
Sorry. But this just hits one of my most sensitive buttons. And if you ever come visit me, you'll find me behind a mask whenever there's another CFer in the vicinity. It just makes sense. If Duke sees sense in changing gowns and gloves between every room, then what is their hangup regarding masks?
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 28, 2013
The cost of love
On a certain website I visit regularly for the discussion forums, one submitter asked today, "Who do you love as more than a friend?"
This, at first, seemed like a difficult question to answer, but then I realized I've been meditating on the very answer to that question for some time now.
Obviously, any one of us could say "my mother" or "my spouse" or similar. Duty tells us to name our family and our caregivers. But by the context of the forum, I assume the submitter really meant "of your friends, whom do you love as more than just friends?"
If that's the question, I'll confess that my current medical crisis has cast into hard relief the various strata of friendships I do have and that as I have recently realized, there is a level of friends that is far nearer and dearer to my heart than even my siblings. There are a few fellow CF patients in my life whose health is as precarious as mine - or only somewhat better or somewhat worse. And it's those individuals for whom I would not only go to the mat - as one does with all good friends - but would positively give up my position on the lung transplant list, or pass on an offer, if it could mean they'd get new lungs first. For the first time in my life, I care so much for a certain few individuals (outside of romantic love) that I would literally die for them.
In realizing that, I have discovered a new dimension in what it means to be an adult and a man. A man's desire to live is strong, but his desire for his friends to survive is even stronger. This has nothing to do with the noble concepts of chivalry still ingrained in a youth well brought up, but rather has organically grown from my core: a true desire to see my friends - these friends in particular - survive, grow strong, and live their lives with passion, even if the cost of that should be my own second chance.
By sweat and pain, we each of us has surely earned the ticket for passage to a better, happier life than what we now endure. But if there is not enough room on the ferry for all of us, then I will do my best to put my friends on the boat, while I stay on this shore and hope another ferry comes before it's too late.
Earlier tonight, I spent a few precious hours with one of those friends and her family and for a brief time we could forget our illnesses and just be happy over a board game and some pie. Tonight, I was reminded of the sweet taste of the simple things in life and that this fight is worth it not for the inherent value of our lives alone, but because we have each other.
This, at first, seemed like a difficult question to answer, but then I realized I've been meditating on the very answer to that question for some time now.
Obviously, any one of us could say "my mother" or "my spouse" or similar. Duty tells us to name our family and our caregivers. But by the context of the forum, I assume the submitter really meant "of your friends, whom do you love as more than just friends?"
If that's the question, I'll confess that my current medical crisis has cast into hard relief the various strata of friendships I do have and that as I have recently realized, there is a level of friends that is far nearer and dearer to my heart than even my siblings. There are a few fellow CF patients in my life whose health is as precarious as mine - or only somewhat better or somewhat worse. And it's those individuals for whom I would not only go to the mat - as one does with all good friends - but would positively give up my position on the lung transplant list, or pass on an offer, if it could mean they'd get new lungs first. For the first time in my life, I care so much for a certain few individuals (outside of romantic love) that I would literally die for them.
In realizing that, I have discovered a new dimension in what it means to be an adult and a man. A man's desire to live is strong, but his desire for his friends to survive is even stronger. This has nothing to do with the noble concepts of chivalry still ingrained in a youth well brought up, but rather has organically grown from my core: a true desire to see my friends - these friends in particular - survive, grow strong, and live their lives with passion, even if the cost of that should be my own second chance.
By sweat and pain, we each of us has surely earned the ticket for passage to a better, happier life than what we now endure. But if there is not enough room on the ferry for all of us, then I will do my best to put my friends on the boat, while I stay on this shore and hope another ferry comes before it's too late.
Earlier tonight, I spent a few precious hours with one of those friends and her family and for a brief time we could forget our illnesses and just be happy over a board game and some pie. Tonight, I was reminded of the sweet taste of the simple things in life and that this fight is worth it not for the inherent value of our lives alone, but because we have each other.
November 27, 2013
Hanukkah miracles
Pulmonary Rehab, Day 37.
Tonight begins the festival of lights, celebrating an 8 day miracle so long ago at the restoration of the Temple. It may not be the biggest miracle Yahweh has ever wrought, but we'll take what we can get and be grateful for it.
As I walk the track at rehab and observe the other patients, I see so many miracles in the flesh. Like spirits being called back into life, patients who have returned from the hospital with new lungs arrive and thrive. Complicated cases that hospitals wouldn't touch 5 years ago are now having life breathed into them. It is mind-boggling!
Much as Hanukkah is a week of thanksgiving, so tomorrow Americans observe a day of Thanksgiving, before going back to being the spoiled consumerist brats we are. The last time these two holidays coincided was 125 years ago and the next time will be in 70,000 years (so my sources say). I find it interesting that the roots of both holidays are (like Christmas) slowly being lost to a non-humanist, plastic, and commercial treatment that encourages us to stop thinking and to stop caring. We're subtly being told that by emphasizing compassion only for right now, we can ignore it the rest of the year.
But come to Duke, and there you'll find compassion year-round. Even though doctors and nurses and rehab therapists be cray-cray and push you hard and make you cry, they do it all with the goal of restoring your life. They've created a very hard road here, with many hoops to jump through, and a lot of it is painful and feels arbitrary; sometimes they have to force your cooperation. But I've never experienced (yet) a more *patient* population of medical professionals. They can't understand 100% of course, because they haven't been through this themselves, but what compassion they can extend, they willingly and unfailingly do.* From compassion comes love; from love, miracles.
Today is my 20th day on the transplant list and 15th day since my dry run. I so want new lungs, as I am no longer making headway at rehab and am only able to maintain. Moreso, I want Piper to get a few pounds on, get listed, and transplanted before we light a full menorah. And I want Denise to get listed and transplanted just as rapidly. Tonight, I am reminded of the hope this season and these holidays represent as I fervently hope for three miracles in the next eight days.
*Social Work excepted. Because they're bitches. Amen.
Subscribe to:
Posts (Atom)