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.
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