By definition the medical term for Bronchiectasis is as follows;
"Bronchiectasis is a disease state defined by localized, irreversible dilation of part of the bronchial tree. It is classified as an obstructive lung disease, along with emphysema, bronchitis and cystic fibrosis. Bronchiectasis is a condition in which an area of the bronchial tubes is permanently and abnormally widened (dilated), with accompanying infection."
Here is my refined definition as every single part letter of this word, I despise.
B-brutal
R-rare
O-ominous
N-noxious
C-challenging
H-harmful
I-incessant
E-esoteric
C-caustic
T-tenacious
A-atrocious
S-scary
I-irreversible
S-stationary
Well, there you have it. My rendition of this horrible, terrible, no good, very bad lung disease. It is simple but complex. It has made me who I am today, and oddly enough, I am thankful for that. I am stronger because of it, hopeful because of it, stubborn because of it. I do what I do, because of it. I am not however, defined by it. I do not let it stop me from being me, or from doing anything in life I would like to do. I have learned a lot about myself because of it, and I appreciate life because of it. So, thank you, bronchiectasis, for making me who I am today. It has been and will continue to be a "love-hate" relationship, but we're stuck with each other...so let the journey continue.
Sincerly,
Rebs
Tuesday, November 23, 2010
Sunday, November 21, 2010
HOPE
Hope. Powerful, intangible.
That sense of relief, it is not over,
but just began.
Hope. Present but so far away,
full of life, passion.
Holding on, trying to get back up.
Courage to stand up against the enemy,
boxing gloves and sweat,
heavy breaths, deep breaths.
Filling the lungs with life.
Why, why me.
What did I do, did I deserve this.
I'll never understand, why.
I'll take it, bring it on.
think you can beat me, try again.
Resistance, pushing back.
Strong and solid,
not weak and fragile.
You think you'll win.
Guess again.
Hope, hold on, one more breath.
One long life to live.
H - Happiness.
O - Optimism.
P - Powerful.
E - Encompassing.
That sense of relief, it is not over,
but just began.
Hope. Present but so far away,
full of life, passion.
Holding on, trying to get back up.
Courage to stand up against the enemy,
boxing gloves and sweat,
heavy breaths, deep breaths.
Filling the lungs with life.
Why, why me.
What did I do, did I deserve this.
I'll never understand, why.
I'll take it, bring it on.
think you can beat me, try again.
Resistance, pushing back.
Strong and solid,
not weak and fragile.
You think you'll win.
Guess again.
Hope, hold on, one more breath.
One long life to live.
H - Happiness.
O - Optimism.
P - Powerful.
E - Encompassing.
Sunday, November 14, 2010
Reality Check
Almost a month after the day that changed a lot of things for Bob and I, I feel the desire to actually put it in writing...these bottled up feelings and emotions. There is no "right" way to start this, so I suppose I'll just dive in.
On October 21, Bob and I visited my pulmonary doctor for what we thought would be an uplifting, somewhat "routine" check up visit. Instead it proved to be one of the most heart wrenching, cathartic and emotionally draining visits yet. Let me preface this visit with the fact that I had devoted about 8 weeks (prior to the visit), to strict gym time with increasingly challenging heart pumping, lung burning cardio sessions and voluntary "groundings" on my part. What I mean by "groundings"; 8 hrs of sleep (at least) per night, no late nights with friends at the bars, healthful eating habits and mandatory adherence to my treatments and medications. What's in a treatment?? What medications you ask??? Well, let me indulge you in the polypharmaceutical life, I live every day.
Upon waking, I spend about 30 minutes inhaling "mist-acle" variety of drugs via a nebulizer. Albuterol, opens up the airways (ahhhhh, I can feel it just thinking about it). Pulmozyme, once the airways are opened, pulmozyme breaks up all the yucky mess that collects in my lungs. It essentially breaks down the DNA of mucous that causes it to be sticky and thick (which is the cause for infections), and thus makes pulmonary clearance easier for me. Pulmozyme is a "miracle" drug to many with cystic fibrosis and other lung conditions like myself. Then, I inhale a mist of steroids which help to reduce the inflammation. Every other month, I end this trilogy of medications with a "fourth-comer" linebacker, TOBI. Tobi is an antibiotic that I inhale to treat any infection currently going on within the battlegrounds of my lungs. When TOBI is involved, my daily routing is about 45 minutes. Along with the nebulizer and at the same time, I am continuously being "shaken up" by a HillRom Vest. This vest I strap on, latch up and connect to a machine that produces airflow in vibrating patterns, hence, the shaking. The vest helps move things around and loosen up things in my lungs...all in hopes that it will make breathing for the day, better. The vest is also known as "pulmonary clearance", and my doctor wants me to do this four times a day (30 minutes each...or two hours total). Throughout the day, I revisit my "breathing station" and inhale albuterol to keep the lungs open. I repeat the entire morning process in the evening before bed. Exercise is form of pulmonary clearance so one dose of the gym is good for one "treatment" of the vest. Also, throughout the typical day, Bob will pound on my back knocking on the door of gunk...keeping it from collecting in the lungs. All of this, we do just to put up a comparable fight against this stuff. There is a constant battle going on underneath the freckles, bones, muscles....down at a cellular level, and if we let up, it can take over rapidly and cause me to feel really icky, really fast.
Now, I am not complaining. Things could be a lot worse. This is just how I have to live, no questions asked. So, back to the visit. As I mentioned, I followed a strict agenda to have the best possible visit. Every time I see the pulmonary doctor, they check my "lung function". And while those numbers do not mean everything, they sure have a visceral effect on me emotionally. Since childhood, I have never had "normal" numbers...thus as an adult, they are far from normal. To be blunt and precise, a "typical" or "normal" breathing human being, would have an FEV1 of 100%. Mine, roughly 35%. This means that over half of my lung function has been lost to bronchiectasis. Over half.
Obviously this is where the problem comes in. With such low lung capacity and such high risk for further injury, I "breathe" such a fine line of health and sickness. To add further insult, my doctor explained that just as a by product of living, humans tend to lose "x" amount of lung function per year, once one turns 30. I will be 28 this year. So the brutality of the situation resides in the fact that I have little room for complications. Being an optimist, I like to think, I have a LOT of room for improvement. A lot of my lung function is permanently damaged, but I am still clinging to the hope that there is still some room for improvement and I can get that 35% up to 40% or maybe 45%. This is where the strenuous exercise comes in, as well as the "rules" I have to adhere to ever so closely. Your lungs are like a muscle, so I have to work them hard to train and strengthen them so as to obtain the best functionality from them as possible.
Where it turns even more grim is here. Because of my low lung function, I have to consider "options" as I continue to fight this battle. One option that has been brought to my attention, is that of a lung transplant. When lung function dips into the 20 percentile range, lung transplantation becomes a very serious and real situation. While I was in the hospital in June, I visited with one of the top lung transplant specialists(and his team) in the nation. This was a heavy reality check. Just the thought of having to go through such a traumatic procedure frightens me. (I mean...they take out the old damaged lungs, and replace them with bright new shiny lungs. Like a trip to the car dealer, right?? Hardly.) The situation also intrigues me, a successful transplantation can result in a much higher quality of life. Life without breathing problems. I can't imagine what this might feel like. My doctor also cautiously insinuated that my "life span" ... will probably not be as long as a (here we go again), "normal-human-being."
Having to face your own mortality is bizarre. Realizing that a medical professional who sincerely cares about you, is telling you that your life might be cut "short" ... talk about anxiety, fear, distress, panic, sadness, anger, resentment, stress, insomnia, guilt, EMOTIONAL TURMOIL. I cried more the first couple days after that visit than I have in years. I felt sad, depressed, scared and lifeless. I felt I didn't have much going for me, everything is working against me. I wanted so much to have an "A+" at the doctor and I felt like I walked away with a big fat "F". I was doing everything right, yet I felt like I had done something wrong. So to say the least, the visit was hard. I lost hours of sleep, buckets of tears, probably a couple pounds...and to this day, I still lose it occasionally. A song will come on and bring me to tears, or I will watch my husband sleeping and feel and overwhelming black cloud pour over me. I don't ever want to leave him. I don't ever want my loved ones to see me suffer.
The visit did however, change my life for the better. Sometimes a little reality check is enough to bring clarity to things that once were blurry. The visit made me realize that my life will be different and that I have to enjoy every moment as it could be my last. Each day is a blessing and every moment counts. It also made me realize how good I have things and which friends are truly my friends. I have an ever loving and supportive husband and family. I have friends that understand that things are different and they accept me for me. I have two wonderful furballs who provide unconditional love every day. I have an amazing home in Chicago, I have a great job which allows me to give back. My parents have always been by my side and would drop everything to be with me. To comfort me. Sure, there are times when I let the situation get me down, but I am slowly but surely coming to terms with things. I truly value the days I have on this earth....I truly value every breath I take. One may consider myself unlucky, but I feel I am the lucky one. To have such a perspective on life, to have such meaning and balance, clarity and to really appreciate things that actually matter most....is a gift. God has given me my lungs, my situation and I can either take it and make the best of the situation or live miserably in fear of the worst. There are people who will go through life, never stopping to embrace the moments that make life worth living. Moments that warm your heart and comfort your soul. I feel blessed and I while I hope others never have to deal with something as serious as our situation...I hope you can truly appreciate your life and your lungs for what they are.
"Life isn't measured by the number of breaths we take, but by the moments that take our breath away"
On October 21, Bob and I visited my pulmonary doctor for what we thought would be an uplifting, somewhat "routine" check up visit. Instead it proved to be one of the most heart wrenching, cathartic and emotionally draining visits yet. Let me preface this visit with the fact that I had devoted about 8 weeks (prior to the visit), to strict gym time with increasingly challenging heart pumping, lung burning cardio sessions and voluntary "groundings" on my part. What I mean by "groundings"; 8 hrs of sleep (at least) per night, no late nights with friends at the bars, healthful eating habits and mandatory adherence to my treatments and medications. What's in a treatment?? What medications you ask??? Well, let me indulge you in the polypharmaceutical life, I live every day.
Upon waking, I spend about 30 minutes inhaling "mist-acle" variety of drugs via a nebulizer. Albuterol, opens up the airways (ahhhhh, I can feel it just thinking about it). Pulmozyme, once the airways are opened, pulmozyme breaks up all the yucky mess that collects in my lungs. It essentially breaks down the DNA of mucous that causes it to be sticky and thick (which is the cause for infections), and thus makes pulmonary clearance easier for me. Pulmozyme is a "miracle" drug to many with cystic fibrosis and other lung conditions like myself. Then, I inhale a mist of steroids which help to reduce the inflammation. Every other month, I end this trilogy of medications with a "fourth-comer" linebacker, TOBI. Tobi is an antibiotic that I inhale to treat any infection currently going on within the battlegrounds of my lungs. When TOBI is involved, my daily routing is about 45 minutes. Along with the nebulizer and at the same time, I am continuously being "shaken up" by a HillRom Vest. This vest I strap on, latch up and connect to a machine that produces airflow in vibrating patterns, hence, the shaking. The vest helps move things around and loosen up things in my lungs...all in hopes that it will make breathing for the day, better. The vest is also known as "pulmonary clearance", and my doctor wants me to do this four times a day (30 minutes each...or two hours total). Throughout the day, I revisit my "breathing station" and inhale albuterol to keep the lungs open. I repeat the entire morning process in the evening before bed. Exercise is form of pulmonary clearance so one dose of the gym is good for one "treatment" of the vest. Also, throughout the typical day, Bob will pound on my back knocking on the door of gunk...keeping it from collecting in the lungs. All of this, we do just to put up a comparable fight against this stuff. There is a constant battle going on underneath the freckles, bones, muscles....down at a cellular level, and if we let up, it can take over rapidly and cause me to feel really icky, really fast.
Now, I am not complaining. Things could be a lot worse. This is just how I have to live, no questions asked. So, back to the visit. As I mentioned, I followed a strict agenda to have the best possible visit. Every time I see the pulmonary doctor, they check my "lung function". And while those numbers do not mean everything, they sure have a visceral effect on me emotionally. Since childhood, I have never had "normal" numbers...thus as an adult, they are far from normal. To be blunt and precise, a "typical" or "normal" breathing human being, would have an FEV1 of 100%. Mine, roughly 35%. This means that over half of my lung function has been lost to bronchiectasis. Over half.
Obviously this is where the problem comes in. With such low lung capacity and such high risk for further injury, I "breathe" such a fine line of health and sickness. To add further insult, my doctor explained that just as a by product of living, humans tend to lose "x" amount of lung function per year, once one turns 30. I will be 28 this year. So the brutality of the situation resides in the fact that I have little room for complications. Being an optimist, I like to think, I have a LOT of room for improvement. A lot of my lung function is permanently damaged, but I am still clinging to the hope that there is still some room for improvement and I can get that 35% up to 40% or maybe 45%. This is where the strenuous exercise comes in, as well as the "rules" I have to adhere to ever so closely. Your lungs are like a muscle, so I have to work them hard to train and strengthen them so as to obtain the best functionality from them as possible.
Where it turns even more grim is here. Because of my low lung function, I have to consider "options" as I continue to fight this battle. One option that has been brought to my attention, is that of a lung transplant. When lung function dips into the 20 percentile range, lung transplantation becomes a very serious and real situation. While I was in the hospital in June, I visited with one of the top lung transplant specialists(and his team) in the nation. This was a heavy reality check. Just the thought of having to go through such a traumatic procedure frightens me. (I mean...they take out the old damaged lungs, and replace them with bright new shiny lungs. Like a trip to the car dealer, right?? Hardly.) The situation also intrigues me, a successful transplantation can result in a much higher quality of life. Life without breathing problems. I can't imagine what this might feel like. My doctor also cautiously insinuated that my "life span" ... will probably not be as long as a (here we go again), "normal-human-being."
Having to face your own mortality is bizarre. Realizing that a medical professional who sincerely cares about you, is telling you that your life might be cut "short" ... talk about anxiety, fear, distress, panic, sadness, anger, resentment, stress, insomnia, guilt, EMOTIONAL TURMOIL. I cried more the first couple days after that visit than I have in years. I felt sad, depressed, scared and lifeless. I felt I didn't have much going for me, everything is working against me. I wanted so much to have an "A+" at the doctor and I felt like I walked away with a big fat "F". I was doing everything right, yet I felt like I had done something wrong. So to say the least, the visit was hard. I lost hours of sleep, buckets of tears, probably a couple pounds...and to this day, I still lose it occasionally. A song will come on and bring me to tears, or I will watch my husband sleeping and feel and overwhelming black cloud pour over me. I don't ever want to leave him. I don't ever want my loved ones to see me suffer.
The visit did however, change my life for the better. Sometimes a little reality check is enough to bring clarity to things that once were blurry. The visit made me realize that my life will be different and that I have to enjoy every moment as it could be my last. Each day is a blessing and every moment counts. It also made me realize how good I have things and which friends are truly my friends. I have an ever loving and supportive husband and family. I have friends that understand that things are different and they accept me for me. I have two wonderful furballs who provide unconditional love every day. I have an amazing home in Chicago, I have a great job which allows me to give back. My parents have always been by my side and would drop everything to be with me. To comfort me. Sure, there are times when I let the situation get me down, but I am slowly but surely coming to terms with things. I truly value the days I have on this earth....I truly value every breath I take. One may consider myself unlucky, but I feel I am the lucky one. To have such a perspective on life, to have such meaning and balance, clarity and to really appreciate things that actually matter most....is a gift. God has given me my lungs, my situation and I can either take it and make the best of the situation or live miserably in fear of the worst. There are people who will go through life, never stopping to embrace the moments that make life worth living. Moments that warm your heart and comfort your soul. I feel blessed and I while I hope others never have to deal with something as serious as our situation...I hope you can truly appreciate your life and your lungs for what they are.
"Life isn't measured by the number of breaths we take, but by the moments that take our breath away"
Tuesday, November 9, 2010
Welp, roids it is....hummpppfff.
Well, call me "Super-Rebs"...back on the roids again. Prednisone can be a girls best friend, while at the same time an internal, emotional train-wreck in the making. It seems that sometimes prednisone is only thing that can end the massive wheezing and release the tightness within these walls of inflammation that I call my lungs. I never know what sets these episodes off, but I do know what ALWAYS helps, roids. Being in the health care field, I know what the long term effects of steroid use can be, so hopefully this will be a short "burst". Until then, my wonderful husband has been alerted the the "rebs-roid-machine" is on the prowl and a simple "yes-hun" agreement with me usually works to his advantage:)
On a much lighter and more exciting note, we are getting ready to book a couple big trips including one to Austin for Santa Clause and one to Maui for a wedding extravaganza in February!! To escape the winter TWICE for warmer temps and sunny skies is truly a blessing during the cold, windy, depressingly grey skies we see for months in chi town. Bob and I will also be traveling to Minnesota for Turkey day where we will spend the day feasting on tryptophan and enjoying the company of his family.
Lastly, workouts have been steady. Saturday and Sunday Bob and I made it to the gym both days and I got a good 2.1mile run/walk in Saturday and a 25minute elliptical workout in Sunday. Monday I took off and today (11/9) I detoxed at Bikram yoga for 90minutes. Wheeew, that is a workout!!
On a much lighter and more exciting note, we are getting ready to book a couple big trips including one to Austin for Santa Clause and one to Maui for a wedding extravaganza in February!! To escape the winter TWICE for warmer temps and sunny skies is truly a blessing during the cold, windy, depressingly grey skies we see for months in chi town. Bob and I will also be traveling to Minnesota for Turkey day where we will spend the day feasting on tryptophan and enjoying the company of his family.
Lastly, workouts have been steady. Saturday and Sunday Bob and I made it to the gym both days and I got a good 2.1mile run/walk in Saturday and a 25minute elliptical workout in Sunday. Monday I took off and today (11/9) I detoxed at Bikram yoga for 90minutes. Wheeew, that is a workout!!
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