Oh, I have long abandoned this blog for the colorful world of tumblr and the instant gratification that is facebook.
Yet here I am, slowly coming back around to this baby o' mine, the original platform for spilling my thoughts out onto the internet.
Life has been... up and down and all over the place. My lung function had maintained itself in the 25-28% range for the past year. Then, last month, it took a tumble down to the low 20's, and I found myself sitting on my couch on two liters of oxygen, barely breaking 90% even at rest.
I'm not sure why my declining health continues to take me by surprise, but it does, and I was pure anxiety; I couldn't walk without being extremely breathless, I couldn't bathe, my dishes were piling up, I didn't have the energy to cook, and the thought of driving to get food exhausted me, so I did what any other twenty-five year old in this situation would do - I called my mom.
She and my dad hopped on a plane, and in the meantime, this wonderful young man with whom I am rather smitten was by my side, bringing me delicious meals and making me laugh my way through my fear. He's amazing, and I am grateful. Their support keeps me going, whether they realize it or not. I'm not terribly strong all the time, I have days where I ask what the point of it all is, but then I see how much love they pour into my life, and I remember that they're worth every single hospital trip. Every nebulizer treatment. Every half-hour on the treadmill.
Then came the admission, and the IVs, and the steroids, and the benadryl, and the drug reactions, and the late night blown IVs, and the tunneled small bore cathether, and the second tunneled small bore catheter... Sigh. Life is never simple, is it?
With that said, I'm recovering nicely, and will be going home just in time for Christmas. I've got a physical therapist who I can not sing praise for enough, she is probably the reason this admission is only two weeks and not three, and has given me more motivation to get back to the gym than I'll ever actually admit. ;]
But as with any disease that causes organ failure, eventually the conversation of transplant becomes more frequent, and as of yesterday, I am officially on the lung transplant list for the New England region.
Yikes.
I am overwhelmed. I felt an equal mixture of gratitude and relief, fear and anxiety. There was a little bit of laughter, a little bit of tears, a sadness at realizing that my lungs can't keep my body going any longer, and a firm belief that my life post-transplant will be the greatest gift I'll ever receive.
So from here, it's just a waiting game.
But with the day of discharge in sight, I can now focus on the enormous list of tasks I have yet to even start for Christmas! Friday evening will be a baking night, I believe, and Saturday, a trip to the shops to attempt to find last minute gifts. And as always, quality time with my mom, my dad, and my love, because isn't that what this life is all about?
-R xx
Wednesday, December 19, 2012
Wednesday, April 4, 2012
They wept for her body and rejoiced for her soul.
Found peace in liberation and sorrow in loss.
Found solace in tradition, in hope, in remembrance.
And after awhile, they left her side. Her eyes no longer able to see their tears, but her love they carried with them, along with her memory and her joy.
Found peace in liberation and sorrow in loss.
Found solace in tradition, in hope, in remembrance.
And after awhile, they left her side. Her eyes no longer able to see their tears, but her love they carried with them, along with her memory and her joy.
Sunday, April 1, 2012
I'm starting to sound like a broken record.
CF this, lung transplant that.
But, despite my best efforts, CF is becoming more prevalent in my life, and that's an adjustment I'm slowly learning how to cope with.
And I find writing to be cathartic, a method of sorting out my thoughts into a legible, comprehensible order. They rattle less in my brain, and there's more room to remember the fun stuff, like how to lip-sync to bad 80's songs (and by bad, I mean SO GOOD), and how to play Jenga.
For awhile there I felt like I lost a bit of who I was. A vital bit, personality wise. I lost my sense of humor, and life isn't a great time when there's nothing to smile about. I've been working on that. I even cracked a few (awful) jokes lately. I smile more. I feel better about myself, and about these ol' lungs of mine.
So, quasi sense of humor in tact, I had a meeting with the new pulmonologist on the team, and she introduced me to the nitty gritty of transplant life. It was fascinating, scary, daunting, and informative. I like information. I like to pretend that I have some iota of control over my life, and one way of doing that is processing and understanding what may occur in the future.
Like, you know, a humongous surgery of monstrous proportion.
No biggie.
So in having her explain the process in such depth, I felt a weight lift. A dead weight that I didn't realize I was carrying, a weight that stems from not understanding, and being afraid. From lacking the confidence to believe that I could survive something so huge.
Well, now I understand a bit more, and it's still damn scary, but it feels like something I could do. Something I could take on and handle, just like I've handled CF for many, many years.
In no way perfectly, but as a work in progress.
SO: to summarize what the Dr and I talked about, these are the highlights of pre-surgery, surgery, and post-surgery events that I may or may not one day face. I'm simply putting it here to chronicle it for my own sake, as a way to organize, at least in writing, something so huge.
1. In the past, when a patient’s lung function dropped below 30%, that was an indicator of needing to be evaluated, if not listed for organ transplantation.
2. Today, that’s less of a factor than other clinical signs, such as carbon dioxide retention and constant use of oxygen, generally in the 4-6 liter range. That’s a LOT of supplemental O2.
3. I’m fortunate to say that my body exhibits neither of those. That lifts a slight weight off my shoulders.
4. Once the evaluation tests are done (psychological, physical, in depth look at all organ systems, etc, etc) and if I deem fit to be listed, I would be given an allocation number and placed on the organ list accordingly. The old system was first come, first serve, and the new way of doing things allows patients with greater need for organs to get transplanted first.
5. As a rule, cystic fibrosis patients are young when listed, and given a fairly high allocation number compared to the elderly, say, COPD patients with a history of smoking.
6. Mass General is very specific about the lungs they choose. Apparently lungs are a tricky organ to find is top shape. Often they’re damaged in whatever accident deemed them available, or they’ve been ruined by smoking or infection.
7. Once a set of lungs is available that matches my blood type, body size, and sometimes even age is a factor, they’ll call me in and I’ll be prepped for surgery. They make incisions below the breasts on both sides, and the operation lasts for 6-7 hours, provided all goes smoothly.
8. I would be placed on a ventilator post surgery, while sedated, as the new lungs would need time to adjust to breathing on their own. There would be four chest tubes placed; two in each upper lobe, and two in each lower, to drain fluid, air, blood, etc. Those would be kept in place for two-ish weeks.
9. Once off the ventilator, and off the sedatives, though very much so still on pain medicines, anywhere from 1-7 days post surgery, I would be moved from the ICU to a general medicine floor, where I would stay for a rather extended amount of time to recover.
10. I guess it’s standard to have a hospital stay within the first six months, and the recovery for the incisions would be rather extensive - 3-6 months. Until that point, I wouldn’t be physically able to drive, exercise, do any physical activity that could strain my chest.
11. There would be a bronchoscopy at 1 month post-op, and 3 months, 6 months, 12 months, etc. That’s the doctor’s way of determining whether an infection exists, or whether our bodies are rejecting the new lungs.
12. Unfortunately I’d be on a rigid regimen of immunosuppressants to keep my body from rejecting the foreign lungs. Those can affect kidneys, blood pressure, GI tract, etc. Though, from a medical standpoint, that’s all treatable, whereas chronic rejection can be untreatable.
As I said, daunting.
I wake up some days in a state of blissful morning forgetfulness, and I feel healthy and free and then I remember, and I wonder how I'll keep dealing with this as it continues to progress.
But, in the fine words of a Miss Dory the Fish - just keep swimming.
CF this, lung transplant that.
But, despite my best efforts, CF is becoming more prevalent in my life, and that's an adjustment I'm slowly learning how to cope with.
And I find writing to be cathartic, a method of sorting out my thoughts into a legible, comprehensible order. They rattle less in my brain, and there's more room to remember the fun stuff, like how to lip-sync to bad 80's songs (and by bad, I mean SO GOOD), and how to play Jenga.
For awhile there I felt like I lost a bit of who I was. A vital bit, personality wise. I lost my sense of humor, and life isn't a great time when there's nothing to smile about. I've been working on that. I even cracked a few (awful) jokes lately. I smile more. I feel better about myself, and about these ol' lungs of mine.
So, quasi sense of humor in tact, I had a meeting with the new pulmonologist on the team, and she introduced me to the nitty gritty of transplant life. It was fascinating, scary, daunting, and informative. I like information. I like to pretend that I have some iota of control over my life, and one way of doing that is processing and understanding what may occur in the future.
Like, you know, a humongous surgery of monstrous proportion.
No biggie.
So in having her explain the process in such depth, I felt a weight lift. A dead weight that I didn't realize I was carrying, a weight that stems from not understanding, and being afraid. From lacking the confidence to believe that I could survive something so huge.
Well, now I understand a bit more, and it's still damn scary, but it feels like something I could do. Something I could take on and handle, just like I've handled CF for many, many years.
In no way perfectly, but as a work in progress.
SO: to summarize what the Dr and I talked about, these are the highlights of pre-surgery, surgery, and post-surgery events that I may or may not one day face. I'm simply putting it here to chronicle it for my own sake, as a way to organize, at least in writing, something so huge.
1. In the past, when a patient’s lung function dropped below 30%, that was an indicator of needing to be evaluated, if not listed for organ transplantation.
2. Today, that’s less of a factor than other clinical signs, such as carbon dioxide retention and constant use of oxygen, generally in the 4-6 liter range. That’s a LOT of supplemental O2.
3. I’m fortunate to say that my body exhibits neither of those. That lifts a slight weight off my shoulders.
4. Once the evaluation tests are done (psychological, physical, in depth look at all organ systems, etc, etc) and if I deem fit to be listed, I would be given an allocation number and placed on the organ list accordingly. The old system was first come, first serve, and the new way of doing things allows patients with greater need for organs to get transplanted first.
5. As a rule, cystic fibrosis patients are young when listed, and given a fairly high allocation number compared to the elderly, say, COPD patients with a history of smoking.
6. Mass General is very specific about the lungs they choose. Apparently lungs are a tricky organ to find is top shape. Often they’re damaged in whatever accident deemed them available, or they’ve been ruined by smoking or infection.
7. Once a set of lungs is available that matches my blood type, body size, and sometimes even age is a factor, they’ll call me in and I’ll be prepped for surgery. They make incisions below the breasts on both sides, and the operation lasts for 6-7 hours, provided all goes smoothly.
8. I would be placed on a ventilator post surgery, while sedated, as the new lungs would need time to adjust to breathing on their own. There would be four chest tubes placed; two in each upper lobe, and two in each lower, to drain fluid, air, blood, etc. Those would be kept in place for two-ish weeks.
9. Once off the ventilator, and off the sedatives, though very much so still on pain medicines, anywhere from 1-7 days post surgery, I would be moved from the ICU to a general medicine floor, where I would stay for a rather extended amount of time to recover.
10. I guess it’s standard to have a hospital stay within the first six months, and the recovery for the incisions would be rather extensive - 3-6 months. Until that point, I wouldn’t be physically able to drive, exercise, do any physical activity that could strain my chest.
11. There would be a bronchoscopy at 1 month post-op, and 3 months, 6 months, 12 months, etc. That’s the doctor’s way of determining whether an infection exists, or whether our bodies are rejecting the new lungs.
12. Unfortunately I’d be on a rigid regimen of immunosuppressants to keep my body from rejecting the foreign lungs. Those can affect kidneys, blood pressure, GI tract, etc. Though, from a medical standpoint, that’s all treatable, whereas chronic rejection can be untreatable.
As I said, daunting.
I wake up some days in a state of blissful morning forgetfulness, and I feel healthy and free and then I remember, and I wonder how I'll keep dealing with this as it continues to progress.
But, in the fine words of a Miss Dory the Fish - just keep swimming.
Tuesday, March 20, 2012
Saturday, March 17, 2012
I realize that at times, specifically when I’m hospitalized, I find myself longing for my ‘hospital’ life to end, and for my ‘real’ life to continue in its place.
Well…. If I’m going to be honest with myself and the internet world, I also have a hard time with acceptance, and change, and accepting change. So for my life to once again revolve around admissions is a struggle for me to adapt to, and I’m enduring an inner battle of wills - to accept my life for exactly what it is, and to be okay with exactly where I am, or to continue being frustrated with my circumstances, and caught in a tangle of anxiety and impatience.
I’d like to think that this is a good chance for me to really dig deep and identify my less attractive tendencies and work on them. But in reality, I wish life were simpler, and that improving as a human being was easier, less work, more ‘instant’ progress.
Ideally I’d wake up tomorrow and be patient; open to the idea of my health’s uncertain evolution. And I’d have perfect teeth and a nicer bum.. And I'd be sunbathing in New Zealand right now, or perhaps in the south of France...
But I’m realizing that this life is a learning life, and I’ve been handed an odd hand because some part of me is capable of not just accepting it, but thriving.
Accepting that my physical limitations may be more real some days than others, and that it’s not my fault that this disease progresses. THAT is a tough one. I tend to blame myself for my body’s inability to cure itself.
Accepting that my life is never on hold, it’s just a different life than the one I would perhaps choose for myself. That hospital life is “real” life, and the sooner I begin to accept that, the easier the experience of being a patient will be.
That acceptance doesn’t mean giving up. Surrendering to what life hands me is the hardest thing I’ve ever even thought about doing, because that would mean that I’d have to forfeit control, or what little control I’d like to think I have… and that’s terrifying. Letting go is much more difficult than holding on, although it’s also exactly what I should be doing.
Surrendering my trust to the universe. Trusting that my life is exactly as it should be, just as it is.
This, my friends, is a work in progress.
Well…. If I’m going to be honest with myself and the internet world, I also have a hard time with acceptance, and change, and accepting change. So for my life to once again revolve around admissions is a struggle for me to adapt to, and I’m enduring an inner battle of wills - to accept my life for exactly what it is, and to be okay with exactly where I am, or to continue being frustrated with my circumstances, and caught in a tangle of anxiety and impatience.
I’d like to think that this is a good chance for me to really dig deep and identify my less attractive tendencies and work on them. But in reality, I wish life were simpler, and that improving as a human being was easier, less work, more ‘instant’ progress.
Ideally I’d wake up tomorrow and be patient; open to the idea of my health’s uncertain evolution. And I’d have perfect teeth and a nicer bum.. And I'd be sunbathing in New Zealand right now, or perhaps in the south of France...
But I’m realizing that this life is a learning life, and I’ve been handed an odd hand because some part of me is capable of not just accepting it, but thriving.
Accepting that my physical limitations may be more real some days than others, and that it’s not my fault that this disease progresses. THAT is a tough one. I tend to blame myself for my body’s inability to cure itself.
Accepting that my life is never on hold, it’s just a different life than the one I would perhaps choose for myself. That hospital life is “real” life, and the sooner I begin to accept that, the easier the experience of being a patient will be.
That acceptance doesn’t mean giving up. Surrendering to what life hands me is the hardest thing I’ve ever even thought about doing, because that would mean that I’d have to forfeit control, or what little control I’d like to think I have… and that’s terrifying. Letting go is much more difficult than holding on, although it’s also exactly what I should be doing.
Surrendering my trust to the universe. Trusting that my life is exactly as it should be, just as it is.
This, my friends, is a work in progress.
Tuesday, January 31, 2012
reminisce;
Sunday, January 15, 2012
gratitude;
Seventy-five milligrams of Benadryl a day.
I'm a goddamn zombie. I'm not even a zombie. I'm just sleepwalking my way through the next fourteen days. I'll do my best to be articulate, but if this ends with a run-on sentence, I'm just asleep at the keyboard.
I sat in the hallway of the interventional radiology department waiting to get a picc placed, and since I had time to think, I did, and I thought about what a strange life this is.
Not in a negative sense, or even in a positive sense, it's just an interesting life I'm leading. CF makes my life ... different and strange and difficult, and yet, good.
I've had quasi-rebellious periods, where I rejected everything CF related, and I've wanted to zap the genetic defects away with a magic wand from a fairy godmother, and while she's around, how about being a few inches taller? And maybe red hair? Red hair could be fun...
And I also realize that CF is an odd form of a blessing, and at times, it just is. It's nothing more and nothing less, it just is. I'm twenty-four, still in college, have a dog, have long fingers and long hair, can sing every song from the Sound of Music, and have cystic fibrosis. It just is.
I'm unsure what the outcome of this admission is. I'm hopeful, er, hopefully realistic. I spend hours working on improving my lung function, and yet showering can deplete me of my energy. I've had to reevaluate my physical limitations, and mentally accept that yes, I have limits. Acceptance is a process.
But can I say that I am overwhelmed with gratitude and relief for this team? They give nothing less than every ounce of support I've asked for, and oftentimes more. I'm blessed.
I'm under the weather, I worry about the future, I lead an odd life, and yet it's a beautiful life, and I'm grateful.
I'm a goddamn zombie. I'm not even a zombie. I'm just sleepwalking my way through the next fourteen days. I'll do my best to be articulate, but if this ends with a run-on sentence, I'm just asleep at the keyboard.
I sat in the hallway of the interventional radiology department waiting to get a picc placed, and since I had time to think, I did, and I thought about what a strange life this is.
Not in a negative sense, or even in a positive sense, it's just an interesting life I'm leading. CF makes my life ... different and strange and difficult, and yet, good.
I've had quasi-rebellious periods, where I rejected everything CF related, and I've wanted to zap the genetic defects away with a magic wand from a fairy godmother, and while she's around, how about being a few inches taller? And maybe red hair? Red hair could be fun...
And I also realize that CF is an odd form of a blessing, and at times, it just is. It's nothing more and nothing less, it just is. I'm twenty-four, still in college, have a dog, have long fingers and long hair, can sing every song from the Sound of Music, and have cystic fibrosis. It just is.
I'm unsure what the outcome of this admission is. I'm hopeful, er, hopefully realistic. I spend hours working on improving my lung function, and yet showering can deplete me of my energy. I've had to reevaluate my physical limitations, and mentally accept that yes, I have limits. Acceptance is a process.
But can I say that I am overwhelmed with gratitude and relief for this team? They give nothing less than every ounce of support I've asked for, and oftentimes more. I'm blessed.
I'm under the weather, I worry about the future, I lead an odd life, and yet it's a beautiful life, and I'm grateful.
Wednesday, December 14, 2011
Friday, December 2, 2011
Simply put, I'm afraid.
Now I've been writing, and writing, and re-writing all about that fear, and how it feels, how it tastes, what it looks like, where in my mind it has taken residence, and what it is exactly that I'm afraid of.
But that's a whole lot of fear and not a lot of room for anything else.
And when I focus on my fears, I forget, sometimes, that I've had CF my entire life.
Twenty-four years of effort, and work, and hospital stays and surgeries and procedures, and complications, and I've gotten through every last bit of it.
I'm still breathing, albeit poorly, I'm still able to walk, I'm not on constant oxygen, and if I do end up on the operating table with a new set of lungs, then it will be a blessing unlike anything I've ever experienced. I'll be able to breathe.
And that's really nothing to be afraid of.
Now I've been writing, and writing, and re-writing all about that fear, and how it feels, how it tastes, what it looks like, where in my mind it has taken residence, and what it is exactly that I'm afraid of.
But that's a whole lot of fear and not a lot of room for anything else.
And when I focus on my fears, I forget, sometimes, that I've had CF my entire life.
Twenty-four years of effort, and work, and hospital stays and surgeries and procedures, and complications, and I've gotten through every last bit of it.
I'm still breathing, albeit poorly, I'm still able to walk, I'm not on constant oxygen, and if I do end up on the operating table with a new set of lungs, then it will be a blessing unlike anything I've ever experienced. I'll be able to breathe.
And that's really nothing to be afraid of.
Thursday, December 1, 2011
pros & cons;
A pro for a lung transplant: I could run a marathon.
A con: I'd have to actually train for said marathon.
A con: I'd have to actually train for said marathon.
Saturday, October 1, 2011
acceptance;;
My head is a lead balloon.
That's the colistimethate sodium talking, drug one of five in my medicinal cocktail provided thoughtfully for me, patient #18561596etcetc, by the doctors at Tampa General Hospital.
It wasn't easier the second time around, like I had originally thought. I was under the impression that life altering news is easier to take after being dealt the blow once already. And, per usual, I was wrong. Wrong wrong wrong.
The transfer of care to Florida from Massachusetts has been a bureaucratic nightmare. I am covered head to toe in insurance bullshit. I've got stacks of contradictory paperwork, physicians who may or may not take my insurance, but have been assigned to me regardless, only to find out that those physicians can't or won't see me, but I can't sign up for a NEW physician for three months. But to see a specialist, I must have a new physician. Now. But really, yesterday would have been better.
It's enough to make a girl have to stop and catch her breath.
And that leads me to conundrum numero dos:
My lung function is at an all-time record low - 26%. My weight, too, is lower than ever at 99.7 lbs.
Weight loss coincides with a decrease in lung function, so, easy - gain weight, improve breathing.
To gain the weight, I need to remove my gallbladder.
To remove my gallbladder, I need to .... improve my lung function! Or face being stuck on a ventilator post surgery with lungs that can't recover from the trauma of being put under anesthesia!
It's a textbook catch-22, and I can't seem to figure out where to start. Neither can my doctors. So not only was I admitted, but they threw out the ugliest phrase I know.
Lung transplant.
I wasn't ready for it three years ago at twenty, and I wasn't ready for it yesterday, despite my belief that the second time around would be easier.
It was not.
But despite my propensity for melodramatic blog posts, I'm not convinced I'm there yet. It took a minute for my mind to adjust to the shock, and digest that mouthful yet again, but once the doctor left the room, and the tears slowed down, on turned a light bulb.
The best kind of light bulb: hope. Or maybe denial, I'm not sure...
I'm just not convinced my lungs can't recover, I'd like to believe I could survive the gallbladder surgery, and I'd really like to believe that once it's out, my weight will go up, my lung function will increase, and I'll be known as The Girl Who Avoided A Lung Transplant Twice.
Yet hope is at times contradictory with acceptance. Acceptance that my lungs are fragile, and it might be time to consider the next step in the disease process; out with the old, in with the new. But yet, acceptance is a fine line away from admitting defeat and slowly becoming okay with that. I want to accept what CF throws my way, but not give up in the process.
And then, today, another thought came to mind, one I have long forgotten. In yoga, there's the idea that the present moment is the only moment; that our minds focus on the past, or the future, on ideas, fears, past experiences, or future anxieties as a distraction to being present. So where does that put this? Do I take this hospital admission at face value? Focusing solely on improving my lung function day by day, and dealing with a transplant if and when it unfolds?
Ideally, yes. But a huge weakness of mine is being 'in the moment' and staying present. I fret, I worry, I over-analyze, I bring up past events and mull over them, I think about the future and project what will/won't happen.
Yet, I'd like to try to accept that right now, at this moment, I am not a transplant patient, I'm merely in the hospital undergoing a routine admission. I'll try to take it day by day, hour by hour if I have to, and not allow the fear of what may or may not happen cripple my mindset and overwhelm my ability to get well.
I would also like to remember that whatever does end up happening is okay. An increase in lung function, a decrease, a gallbladder removal, or a lung transplant. The goal for me isn't to live in fear of the progression of this disease, but to live with CF, presently.
....That said, I really would enjoy a full recovery and a successful surgery and an increase in appetite and weight, and for my pants to fit again, and most of all, most of all, to put the words 'lung' and 'transplant' on separate back burners, and keep them there for as long as possible.
Is it wishful thinking?
Fuck yeah.
Do I care?
Fuck no.
That's the colistimethate sodium talking, drug one of five in my medicinal cocktail provided thoughtfully for me, patient #18561596etcetc, by the doctors at Tampa General Hospital.
It wasn't easier the second time around, like I had originally thought. I was under the impression that life altering news is easier to take after being dealt the blow once already. And, per usual, I was wrong. Wrong wrong wrong.
The transfer of care to Florida from Massachusetts has been a bureaucratic nightmare. I am covered head to toe in insurance bullshit. I've got stacks of contradictory paperwork, physicians who may or may not take my insurance, but have been assigned to me regardless, only to find out that those physicians can't or won't see me, but I can't sign up for a NEW physician for three months. But to see a specialist, I must have a new physician. Now. But really, yesterday would have been better.
It's enough to make a girl have to stop and catch her breath.
And that leads me to conundrum numero dos:
My lung function is at an all-time record low - 26%. My weight, too, is lower than ever at 99.7 lbs.
Weight loss coincides with a decrease in lung function, so, easy - gain weight, improve breathing.
To gain the weight, I need to remove my gallbladder.
To remove my gallbladder, I need to .... improve my lung function! Or face being stuck on a ventilator post surgery with lungs that can't recover from the trauma of being put under anesthesia!
It's a textbook catch-22, and I can't seem to figure out where to start. Neither can my doctors. So not only was I admitted, but they threw out the ugliest phrase I know.
Lung transplant.
I wasn't ready for it three years ago at twenty, and I wasn't ready for it yesterday, despite my belief that the second time around would be easier.
It was not.
But despite my propensity for melodramatic blog posts, I'm not convinced I'm there yet. It took a minute for my mind to adjust to the shock, and digest that mouthful yet again, but once the doctor left the room, and the tears slowed down, on turned a light bulb.
The best kind of light bulb: hope. Or maybe denial, I'm not sure...
I'm just not convinced my lungs can't recover, I'd like to believe I could survive the gallbladder surgery, and I'd really like to believe that once it's out, my weight will go up, my lung function will increase, and I'll be known as The Girl Who Avoided A Lung Transplant Twice.
Yet hope is at times contradictory with acceptance. Acceptance that my lungs are fragile, and it might be time to consider the next step in the disease process; out with the old, in with the new. But yet, acceptance is a fine line away from admitting defeat and slowly becoming okay with that. I want to accept what CF throws my way, but not give up in the process.
And then, today, another thought came to mind, one I have long forgotten. In yoga, there's the idea that the present moment is the only moment; that our minds focus on the past, or the future, on ideas, fears, past experiences, or future anxieties as a distraction to being present. So where does that put this? Do I take this hospital admission at face value? Focusing solely on improving my lung function day by day, and dealing with a transplant if and when it unfolds?
Ideally, yes. But a huge weakness of mine is being 'in the moment' and staying present. I fret, I worry, I over-analyze, I bring up past events and mull over them, I think about the future and project what will/won't happen.
Yet, I'd like to try to accept that right now, at this moment, I am not a transplant patient, I'm merely in the hospital undergoing a routine admission. I'll try to take it day by day, hour by hour if I have to, and not allow the fear of what may or may not happen cripple my mindset and overwhelm my ability to get well.
I would also like to remember that whatever does end up happening is okay. An increase in lung function, a decrease, a gallbladder removal, or a lung transplant. The goal for me isn't to live in fear of the progression of this disease, but to live with CF, presently.
....That said, I really would enjoy a full recovery and a successful surgery and an increase in appetite and weight, and for my pants to fit again, and most of all, most of all, to put the words 'lung' and 'transplant' on separate back burners, and keep them there for as long as possible.
Is it wishful thinking?
Fuck yeah.
Do I care?
Fuck no.
Wednesday, September 14, 2011
Sometimes I wonder if our 'golden' days were those hazy, summer days that melted into the evening, that ended in the early morning, outside our local neighborhood Starbucks.
I wonder if we knew then how great those nights were. Days that blended into each other, no realization that one day, not far from then, every single one of us would go our separate ways, and that group, that indelible group, the group that bonded over uno games and late night caffeine, would never reconnect in the same way after that summer ended.
I think, sometimes, that we had everything we wanted. Friends, love, small town coziness and big town dreams.
Before break-ups, and disappointments, before responsibility hit us across our faces, and before we were let down, and our hearts were broken.
And it faded away as quickly as it appeared, and now we're scattered, and the friendships have changed, the love has come and gone, and Starbucks, well, I still drink it fondly.
I wonder if we knew then how great those nights were. Days that blended into each other, no realization that one day, not far from then, every single one of us would go our separate ways, and that group, that indelible group, the group that bonded over uno games and late night caffeine, would never reconnect in the same way after that summer ended.
I think, sometimes, that we had everything we wanted. Friends, love, small town coziness and big town dreams.
Before break-ups, and disappointments, before responsibility hit us across our faces, and before we were let down, and our hearts were broken.
And it faded away as quickly as it appeared, and now we're scattered, and the friendships have changed, the love has come and gone, and Starbucks, well, I still drink it fondly.
Thursday, September 8, 2011
I think I know which direction I want to go.
And even as I write this, life throws a few other kinks into the mix, and my ideas fly out the window and settle somewhere in the breeze.
I may get to keep my lungs, but I'll lose my gallbladder. The sooner the better, as a ten pound weight loss is impeding on my ability to breathe.
I started class, and am becoming increasingly unsure if this is the right major. Science is just so ... unyielding. I'd like a little more creativity and flow in my life.
I love this heat, the muggy warm nights, the salty sea air, and yet ... I'm a fall baby. I crave those crisp, clean, cool September, October days that I grew up with. The apple orchards, winding New England roads, small town diners and Cape Cod cottages, orange, red, yellow trees. How do you take a Massachusetts girl and expect her to survive ninety degree heat all year round?
And what's that you say? No sweaters in Florida? It's too warm for boots? It doesn't ... snow???
Seriously. What was I thinking.
And even as I write this, life throws a few other kinks into the mix, and my ideas fly out the window and settle somewhere in the breeze.
I may get to keep my lungs, but I'll lose my gallbladder. The sooner the better, as a ten pound weight loss is impeding on my ability to breathe.
I started class, and am becoming increasingly unsure if this is the right major. Science is just so ... unyielding. I'd like a little more creativity and flow in my life.
I love this heat, the muggy warm nights, the salty sea air, and yet ... I'm a fall baby. I crave those crisp, clean, cool September, October days that I grew up with. The apple orchards, winding New England roads, small town diners and Cape Cod cottages, orange, red, yellow trees. How do you take a Massachusetts girl and expect her to survive ninety degree heat all year round?
And what's that you say? No sweaters in Florida? It's too warm for boots? It doesn't ... snow???
Seriously. What was I thinking.
Sunday, September 4, 2011
and we're home;
I spent the entire summer exploring this vast, incredible country I call home.
New Mexico. Arizona. California. Oregon. Washington. Montana. Wyoming. South Dakota. Colorado. Missouri. Tennessee. And Florida, always Florida.
It was exhausting, exhilarating, and a once in a lifetime adventure.
We drove the Pacific Highway, from Los Angeles to San Francisco, and then we found the redwoods. Which were just as big as I remembered. I stood at the top of the Grand Canyon and couldn't quite take in what I was seeing. We splashed our feet in the Pacific, and drank tea in Portland. We shopped in Seattle and drove through hilly San Francisco. We spent the night on an island in Washington, an island so quiet that a person could hear deer munching in the yard. Which they did quite often. Along with frolicking, and whatever else deer do. We experienced the big sky that is Montana, and fell in love with a little town called Whitefish. We drove the Going to the Sun Road, and walked through snow at the top of the Glacier National Park mountains. In July. We discovered cowboy country, and found a town with a population of four. Just four. We spent days without cell service, and decided to buy a ranch in Wyoming. Maybe. Someday. I got wheeled around Mount Rushmore when my lungs took the day off, and we ate frozen yogurt while admiring the good men carved into the mountain. We experienced the beauty that is the Rockies, and the height that is the Mile High city. We stood under the St. Louis arch and got to know Nashville.
We made it home, in one piece and with a car full of mementos.
And a lifetime worth of memories.
New Mexico. Arizona. California. Oregon. Washington. Montana. Wyoming. South Dakota. Colorado. Missouri. Tennessee. And Florida, always Florida.
It was exhausting, exhilarating, and a once in a lifetime adventure.
We drove the Pacific Highway, from Los Angeles to San Francisco, and then we found the redwoods. Which were just as big as I remembered. I stood at the top of the Grand Canyon and couldn't quite take in what I was seeing. We splashed our feet in the Pacific, and drank tea in Portland. We shopped in Seattle and drove through hilly San Francisco. We spent the night on an island in Washington, an island so quiet that a person could hear deer munching in the yard. Which they did quite often. Along with frolicking, and whatever else deer do. We experienced the big sky that is Montana, and fell in love with a little town called Whitefish. We drove the Going to the Sun Road, and walked through snow at the top of the Glacier National Park mountains. In July. We discovered cowboy country, and found a town with a population of four. Just four. We spent days without cell service, and decided to buy a ranch in Wyoming. Maybe. Someday. I got wheeled around Mount Rushmore when my lungs took the day off, and we ate frozen yogurt while admiring the good men carved into the mountain. We experienced the beauty that is the Rockies, and the height that is the Mile High city. We stood under the St. Louis arch and got to know Nashville.
We made it home, in one piece and with a car full of mementos.
And a lifetime worth of memories.
Friday, July 1, 2011
hello from the desert;
Seeing as how I’m in New Mexico, and have arrived at an early hour, I thought I’d take a few minutes to plug back in to the internet world.
Driving across the country is a wonderful way to disconnect. Who needs Facebook when there’s Arkansas and Oklahoma, Texas and New Mexico outside the window?
Not I.
The terrain has slowly transitioned from lush, green hills to wild, dry, and barren. Texas was a stretch of nothing but sky, brown fields, and horse/cattle ranches, with ghost towns at every exit. Abandoned gas stations stood on the right, and old overgrown school buses on the left. There were miles of empty buildings, homes with broken windows and chipping paint. It was, excuse my childish cliche, magical.
I’ve never felt so completely alone, and nostalgic for a town that I had never before seen.
New Mexico has transitioned from the flat plains of Texas to a more rocky terrain, with plateaus and mountains dotting the distance. I’m honestly waiting for a cowboy to ride his horse alongside my car and tell me to ‘stick ‘em up’.
And seeing as how I’m now on mountain time, and the sun doesn’t set until quite late, I’m off to explore what this town has to offer. And maybe photograph a tumbleweed or two..
Driving across the country is a wonderful way to disconnect. Who needs Facebook when there’s Arkansas and Oklahoma, Texas and New Mexico outside the window?
Not I.
The terrain has slowly transitioned from lush, green hills to wild, dry, and barren. Texas was a stretch of nothing but sky, brown fields, and horse/cattle ranches, with ghost towns at every exit. Abandoned gas stations stood on the right, and old overgrown school buses on the left. There were miles of empty buildings, homes with broken windows and chipping paint. It was, excuse my childish cliche, magical.
I’ve never felt so completely alone, and nostalgic for a town that I had never before seen.
New Mexico has transitioned from the flat plains of Texas to a more rocky terrain, with plateaus and mountains dotting the distance. I’m honestly waiting for a cowboy to ride his horse alongside my car and tell me to ‘stick ‘em up’.
And seeing as how I’m now on mountain time, and the sun doesn’t set until quite late, I’m off to explore what this town has to offer. And maybe photograph a tumbleweed or two..
Wednesday, June 22, 2011
Can I just say, that college and CF are not always a compatible pair.
I was just sent your standard issue rejection letter from a college I was very hopeful to attend. The reason? Not enough credits. Or at least, I assume it was that, as my GPA is a 4.0 and you really can't beat that.
When I graduated high school, I started an IV regimen that, at the time, was said to last anywhere from one month to twelve, and dorm room living with an IV pole is not ideal, so I enrolled in the local community college. Six months into it, the IVs stopped, and I planned to transfer. But, alas, CF struck, and I found myself in the hospital frequently that year, again putting off my dreams of a real college experience.
Roll forward to 2008, and, transfer applications sent, I was accepted to two universities that I was equally enthralled with, and ... well, I started lung transplant evaluations that year. College became lost in the paperwork, the barium swallows, the aterial blood gas studies, the xrays, catheters, blood work - the craziness that is a double lung transplant.
That fall was one of my harder times. I had a plan, and if nothing else, I like to think I have control over my life, so this plan had. to. happen. It didn't, naturally, and I was hit, full on, with the realization that I had no control over any aspect of my life, least of all the aspect I would most like to control; my health.
Having it happen again, though, in reverse, if you will, is equally devastating. Not because I begrudge the school for their decision, but because I realize that had I the proper number of credits, or any degree under my belt at all, the response would undoubtedly be quite the opposite.
I get this anxious feeling in the pit of my stomach, like I'm drowning in this town. The last time I was in the hospital, I felt as though I were going to suffocate in the bed, in those generic, hospital issued sweaty sheets, and now, this town, these walls, they're closing in on every side and it takes every effort I can muster just to breathe. To be barred the ability to finish college because of this disgusting disease that I so heartily loathe, well, it makes me hate myself.
I just want to claw it out of myself. Dig and dig and scratch through to my bones and suck out the illness.
I want to be rid of it.
Because maybe, maybe then the anxiety and panic and reality that my life is this disease, that it's all consuming, wouldn't be real.
Maybe my life would be mine, and I could breathe easy again.
I was just sent your standard issue rejection letter from a college I was very hopeful to attend. The reason? Not enough credits. Or at least, I assume it was that, as my GPA is a 4.0 and you really can't beat that.
When I graduated high school, I started an IV regimen that, at the time, was said to last anywhere from one month to twelve, and dorm room living with an IV pole is not ideal, so I enrolled in the local community college. Six months into it, the IVs stopped, and I planned to transfer. But, alas, CF struck, and I found myself in the hospital frequently that year, again putting off my dreams of a real college experience.
Roll forward to 2008, and, transfer applications sent, I was accepted to two universities that I was equally enthralled with, and ... well, I started lung transplant evaluations that year. College became lost in the paperwork, the barium swallows, the aterial blood gas studies, the xrays, catheters, blood work - the craziness that is a double lung transplant.
That fall was one of my harder times. I had a plan, and if nothing else, I like to think I have control over my life, so this plan had. to. happen. It didn't, naturally, and I was hit, full on, with the realization that I had no control over any aspect of my life, least of all the aspect I would most like to control; my health.
Having it happen again, though, in reverse, if you will, is equally devastating. Not because I begrudge the school for their decision, but because I realize that had I the proper number of credits, or any degree under my belt at all, the response would undoubtedly be quite the opposite.
I get this anxious feeling in the pit of my stomach, like I'm drowning in this town. The last time I was in the hospital, I felt as though I were going to suffocate in the bed, in those generic, hospital issued sweaty sheets, and now, this town, these walls, they're closing in on every side and it takes every effort I can muster just to breathe. To be barred the ability to finish college because of this disgusting disease that I so heartily loathe, well, it makes me hate myself.
I just want to claw it out of myself. Dig and dig and scratch through to my bones and suck out the illness.
I want to be rid of it.
Because maybe, maybe then the anxiety and panic and reality that my life is this disease, that it's all consuming, wouldn't be real.
Maybe my life would be mine, and I could breathe easy again.
Friday, June 10, 2011
May I just say, I love genuine enthusiasm.
I really love and appreciate people who are enthusiastic. It's such a great experience to hear someone talk about something that is so fascinating to them that their eyes light up and they just cannotsaywhattheyhavetosayfastenough. Phew.
This trend of 'apathy is cool' is depressing. There's nothing cool or interesting about being apathetic; it's the worst. But, wait, being depressed is like, in. Right?
WRONG!
[Disclaimer - I was never 'hip' in high school, or college, so what I consider to be 'in' may very well be 'out'. But that's just fine with me.]
Let me say this - it's AWESOME to be optimistic and excited and embarrassingly enthusiastic. The more embarrassing, the better, I always say.. [Which explains so much of my life....]
I won't go so far as to say I don't have moments, days, weeks even where I'm unbearably down about everything, times when life and lungs and boy troubles submerge me in a gigantic grumpy mood that I really struggle with. But the point is, I like being optimistic. And when I get back to that, to a point of enjoying life, is when I'm most content. And that's what I most enjoy surrounding myself with. Because there is SO MUCH GOOD in this world, and how can we only focus on the negative when the positive is beating us over our heads with every ray of sunshine and donut shop within driving distance?
With that said, I'll share a few photos in which I am unabashedly happy, which, in the grand scheme of things, is kind of what it's all about, right?
I really love and appreciate people who are enthusiastic. It's such a great experience to hear someone talk about something that is so fascinating to them that their eyes light up and they just cannotsaywhattheyhavetosayfastenough. Phew.
This trend of 'apathy is cool' is depressing. There's nothing cool or interesting about being apathetic; it's the worst. But, wait, being depressed is like, in. Right?
WRONG!
[Disclaimer - I was never 'hip' in high school, or college, so what I consider to be 'in' may very well be 'out'. But that's just fine with me.]
Let me say this - it's AWESOME to be optimistic and excited and embarrassingly enthusiastic. The more embarrassing, the better, I always say.. [Which explains so much of my life....]
I won't go so far as to say I don't have moments, days, weeks even where I'm unbearably down about everything, times when life and lungs and boy troubles submerge me in a gigantic grumpy mood that I really struggle with. But the point is, I like being optimistic. And when I get back to that, to a point of enjoying life, is when I'm most content. And that's what I most enjoy surrounding myself with. Because there is SO MUCH GOOD in this world, and how can we only focus on the negative when the positive is beating us over our heads with every ray of sunshine and donut shop within driving distance?
With that said, I'll share a few photos in which I am unabashedly happy, which, in the grand scheme of things, is kind of what it's all about, right?
Monday, May 23, 2011
I never realized how extensive a process it is to get my life back in balance.
CF has slowly crept into every pocket of my mind and overwhelmed my world.
I woke up today and decided, with a firm affirmation, that that was not alright.
Then, with renewed spirit and morning hair, I turned on an old Feist song that had brightened my mood so many times in the past, and I ate a bowl of cereal.
Decidedly, lung diseases are best shown their place by consuming mass quantities (three bowls!!!) of Honey Bunches of Oats (with pecan bunches).
And with every mark I make in my road atlas, and every note I write to myself about what to pack for the trip, CF slowly fades into the background, a faint protest of 'Don't ignore me!' and 'Insecurity is your friend!' becoming mere squeaks of my mechanical pencil as I erase and rewrite the route of choice from Wyoming to Colorado.
This summer is a metamorphosis. I'm not a sick girl. I'm a girl on a mission to get my little blue car to the west coast and back.
No lung problems or bad attitudes allowed in this clubhouse.
CF has slowly crept into every pocket of my mind and overwhelmed my world.
I woke up today and decided, with a firm affirmation, that that was not alright.
Then, with renewed spirit and morning hair, I turned on an old Feist song that had brightened my mood so many times in the past, and I ate a bowl of cereal.
Decidedly, lung diseases are best shown their place by consuming mass quantities (three bowls!!!) of Honey Bunches of Oats (with pecan bunches).
And with every mark I make in my road atlas, and every note I write to myself about what to pack for the trip, CF slowly fades into the background, a faint protest of 'Don't ignore me!' and 'Insecurity is your friend!' becoming mere squeaks of my mechanical pencil as I erase and rewrite the route of choice from Wyoming to Colorado.
This summer is a metamorphosis. I'm not a sick girl. I'm a girl on a mission to get my little blue car to the west coast and back.
No lung problems or bad attitudes allowed in this clubhouse.
Monday, May 2, 2011
a slow process;;
It's taken me awhile to get back on my feet. If I'm honest with myself, I'm still struggling, though just barely, comparatively.
For two weeks post hospital stay, I was in a daze. I would start to cry for no reason, I was constantly finding myself agitated or upset over something that normally wouldn't cause me to bat an eyelash, I was snippy and snarky and anxious.
But at the point that I was discharged, I'd had over two weeks of consistent, substantial hemoptysis [hi-mop-tuh-sis –noun: the expectoration of blood or bloody mucus] and two procedures. One, fairly routine bronchoscopy followed by a less routine pulmonary embolization, a fascinating procedure that allows interventional radiologists to enter the femoral artery in the groin and travel up and through the descending aorta into the bronchial artery to cauterize malformed, bleeding blood vessels in my lung. Technology never ceases to amaze..
That said, in the hours after the procedure, I felt, for the first time in years, that I couldn't do CF anymore. I hit an invisible, anesthesia induced wall, and as I was lying on my right side, coughing up blood YET AGAIN, a small part of me broke. I tried to control the sensation, but I couldn't see past the bed, the sweat covered pillow and blankets, the catheters, the chest pain, the blood that would. not. stop. How can I get through a lung transplant if I can't even get through this? What is the point, really? I'm never going to sit up again. I'll never stop coughing up blood. I might as well just lay here and cry.
And as a team of anesthesiologists and floor residents flooded my room, I just broke down and cried. My nurse started moving my belongings into the bathroom, and clearing out excess furniture from around my bed, and placed a new ventilator/bag at my bedside, while three doctors had me sign consent to intubate if necessary, and floor residents asked to see the cup of blood and my mom sat by my bed holding my hand as I thought to myself - I really can't do this anymore.
I was, in that moment in time, done.
It's hard to see past times like that. Once those tiny thoughts and insecurities and doubts flood your brain, they're hard to work through. Even after I was discharged, fifteen days later, I was afraid that any coughing would induce another bleed. I was afraid of sleeping, and if I rolled onto my right side I would just cry. Easy as that.
I've been home for a little over three weeks, and I'm starting to feel like myself again. I'm on the mend.. But it's a slow process, and I find myself projecting to what the next procedure may be like, down the line. Or how I'll get through the next admission, or, eventually, a lung transplant.
I also struggle with explaining this to my friends, loved ones, doctors, etc. It's easy for me to feel what I'm feeling, and understand what I'd like people to comprehend and how I'd like them to react, and offer support, but it's hard to express that. How do I say to someone, 'Sorry, you're not being as supportive as I'd like, please get your head out of your ass and help me,' without offending?
But that's a rant for another day.
The point is, the point I've been getting to, slowly, is that I'm recovering.
And that I could still use support.
CF can be so much larger than myself at times, and it takes a HELL of a lot of work to keep my life in balance..
For two weeks post hospital stay, I was in a daze. I would start to cry for no reason, I was constantly finding myself agitated or upset over something that normally wouldn't cause me to bat an eyelash, I was snippy and snarky and anxious.
But at the point that I was discharged, I'd had over two weeks of consistent, substantial hemoptysis [hi-mop-tuh-sis –noun: the expectoration of blood or bloody mucus] and two procedures. One, fairly routine bronchoscopy followed by a less routine pulmonary embolization, a fascinating procedure that allows interventional radiologists to enter the femoral artery in the groin and travel up and through the descending aorta into the bronchial artery to cauterize malformed, bleeding blood vessels in my lung. Technology never ceases to amaze..
That said, in the hours after the procedure, I felt, for the first time in years, that I couldn't do CF anymore. I hit an invisible, anesthesia induced wall, and as I was lying on my right side, coughing up blood YET AGAIN, a small part of me broke. I tried to control the sensation, but I couldn't see past the bed, the sweat covered pillow and blankets, the catheters, the chest pain, the blood that would. not. stop. How can I get through a lung transplant if I can't even get through this? What is the point, really? I'm never going to sit up again. I'll never stop coughing up blood. I might as well just lay here and cry.
And as a team of anesthesiologists and floor residents flooded my room, I just broke down and cried. My nurse started moving my belongings into the bathroom, and clearing out excess furniture from around my bed, and placed a new ventilator/bag at my bedside, while three doctors had me sign consent to intubate if necessary, and floor residents asked to see the cup of blood and my mom sat by my bed holding my hand as I thought to myself - I really can't do this anymore.
I was, in that moment in time, done.
It's hard to see past times like that. Once those tiny thoughts and insecurities and doubts flood your brain, they're hard to work through. Even after I was discharged, fifteen days later, I was afraid that any coughing would induce another bleed. I was afraid of sleeping, and if I rolled onto my right side I would just cry. Easy as that.
I've been home for a little over three weeks, and I'm starting to feel like myself again. I'm on the mend.. But it's a slow process, and I find myself projecting to what the next procedure may be like, down the line. Or how I'll get through the next admission, or, eventually, a lung transplant.
I also struggle with explaining this to my friends, loved ones, doctors, etc. It's easy for me to feel what I'm feeling, and understand what I'd like people to comprehend and how I'd like them to react, and offer support, but it's hard to express that. How do I say to someone, 'Sorry, you're not being as supportive as I'd like, please get your head out of your ass and help me,' without offending?
But that's a rant for another day.
The point is, the point I've been getting to, slowly, is that I'm recovering.
And that I could still use support.
CF can be so much larger than myself at times, and it takes a HELL of a lot of work to keep my life in balance..
Thursday, April 7, 2011
Subscribe to:
Posts (Atom)
