I am happy to report that I am back from a medical hiatus.
One of my goals with regard to this blog is to write at least one new post each week or so. Unfortunately, medical issues have prevented me from writing for the past two months.
On Wednesday, August 11, I entered Massachusetts General Hospital (MGH) for a course of IV antibiotics (a process known as a "cleanout" in CF circles because it cleans out bacteria from one's lungs). It was my first cleanout in more than 11 years; my previous cleanout was in February of 1999. I am truly blessed to have been able to go this long without a cleanout. But I also have worked diligently to maintain my health. None of the medical personnel at MGH (doctors, nurses, etc.) could believe that it had been 11 years since my last cleanout. A number of the doctors remarked about how well I am doing for a 38-year-old with CF. But it still got me thinking about how I have battled and struggled with this disease for my entire life. I have fought (and continue to fight) "the good fight". I am the epitome of a "good soldier".
After spending the first three days in the hospital for my IV cleanout, I was discharged from MGH on Saturday, August 14, to complete the 14-day IV medications process at home. When I was admitted to MGH on the 11th, I had a "PICC" inserted in my upper right arm for the IV antibiotics. PICC stands for peripherally inserted central catheter. It is a form of intravenous access that can be used for a prolonged period of time (e.g. for extended antibiotic therapy or long chemotherapy regimens). When I returned home to continue my cleanout, visiting nurses came to attach tubing to my PICC line and to show me how to administer the IV meds myself. The tubing extended down to the palm of my right hand, thereby allowing me to administer the IV meds without assistance.
As you might imagine, having a PICC in your arm changes your life. I had to do four courses of IV antibiotics each day and was not able to go more than eight hours between treatments. And because the IV meds had to be at room temperature (they required refrigeration) for at least an hour before use, I was never able to get more than six hours or so of sleep each night. I wish I could say that I can function effectively on six hours (or fewer) of sleep a night, but I can't. I cough every day of my life, and this constant coughing (along with other hardships caused by CF) fatigues me. I typically find that I need a minimum of eight hours of sleep a night to feel well and be productive the following day. Anyway, the cleanout deprived me of necessary sleep each night (I was able to nap between IV doses, although I've never been a big napper).
Having a PICC line in your arm changes your life in other ways, too. For example, if I wanted to shower, I had to wrap the PICC and tubing in a sock sleeve and plastic wrapping and then tape everything to my arm to ensure that no water got into or around the PICC site. It was as if I had the use of only one good, working arm throughout the 14-day cleanout. Simple, everyday taks -- like applying deodorant to my underarms -- became significant challenges. It made me truly grateful for all that I am able to do when I don't have a PICC in my arm. It made me appreciate how good and easy my life normally is (e.g. not having to wrap my arm in plastic every time I shower), CF notwithstanding.
Friday, October 1, 2010
Thursday, August 5, 2010
The Wisdom of Confucius
“Our greatest glory is not in never falling but in rising every time we fall.”
- Confucius
- Confucius
Monday, August 2, 2010
Warrior Mentality
For as long as I can remember, I have possessed a warrior mentality with regard to my CF. I view every day as a battle in the overall war against my disease. I believe that this mentality has served me well over the years; indeed, I attribute my survival in large part to my warrior mindset and approach to CF. This warrior mentality reminds me of a great -- and pertinent -- quote I read years ago in a book titled, "Through Indian Eyes: The Untold Story of Native American Peoples”.
Thousands of Americans are believed to have died of cholera from 1849 - 1855. The ranks of the Cheyenne, a tribe of Native Americans in the Great Plains, were especially decimated by the illness. A dying Cheyenne warrior, frustrated at his powerlessness to conquer cholera, remarked: “If I could see this thing, if I knew where it was, I would go there and kill it!”. (That I find in this quote relevance to my own struggles is ironic, since there is an apparent connection between cholera and CF. It has been suggested that the CF genetic mutation has survived through history due to an evolutionary benefit it supposedly confers; heterozygous carriers of the mutation (who are thus not affected by cystic fibrosis) are more resistant to cholera infections.)
Back to the warrior mentality...As I mentioned, I have possessed this mentality for as long as I can remember, while waging war against CF. And I do believe that such an approach has served me well over the years and has contributed to my survival. But surely there must be other ways to confront this disease. Perhaps better ways?
I wonder if functioning in a perpetual state of conflict is ultimately healthy. I know that it can be exhausting. But what is an effective alternative? Laughter is no doubt great medicine. But would a constant cheerful approach to CF (or any other chronic illness) ultimately prove successful? Is such an approach even feasible against a deadly enemy? I wonder.
Thousands of Americans are believed to have died of cholera from 1849 - 1855. The ranks of the Cheyenne, a tribe of Native Americans in the Great Plains, were especially decimated by the illness. A dying Cheyenne warrior, frustrated at his powerlessness to conquer cholera, remarked: “If I could see this thing, if I knew where it was, I would go there and kill it!”. (That I find in this quote relevance to my own struggles is ironic, since there is an apparent connection between cholera and CF. It has been suggested that the CF genetic mutation has survived through history due to an evolutionary benefit it supposedly confers; heterozygous carriers of the mutation (who are thus not affected by cystic fibrosis) are more resistant to cholera infections.)
Back to the warrior mentality...As I mentioned, I have possessed this mentality for as long as I can remember, while waging war against CF. And I do believe that such an approach has served me well over the years and has contributed to my survival. But surely there must be other ways to confront this disease. Perhaps better ways?
I wonder if functioning in a perpetual state of conflict is ultimately healthy. I know that it can be exhausting. But what is an effective alternative? Laughter is no doubt great medicine. But would a constant cheerful approach to CF (or any other chronic illness) ultimately prove successful? Is such an approach even feasible against a deadly enemy? I wonder.
Tuesday, July 27, 2010
Blessings
I aim to make blessings a recurring theme in my blog, just as it has been a recurring theme in my life.
As I state in my profile, “I am burdened with much, but blessed with more”. I know that I would not be alive today were it not for my positive attitude. I am absolutely convinced of the power of positive thinking. And while that power alone will not cure my disease (or any other), its force cannot be underestimated.
I am also convinced of the connection between mind and body. I know that when I allow myself to get down or discouraged, my physical symptoms worsen. Conversely, when I think positively and carry an optimistic worldview, I actually feel better. My disease is still there, but I feel empowered to conquer it.
Each of us has our own personal reality. Within this reality are things that cannot be changed, no matter what we do or how hard we try to change them. For example, CF is part of my reality. I wage a battle against my disease every day; I fight the good fight and play the role of good soldier. But no matter how hard I fight, I can’t rid myself of this enemy inside me. Hopefully a cure for CF will be found in my lifetime. I am hopeful and confident that this will be the case, but until then, CF is part of my life, like it or not.
This brings me to an important point. When you have a part of your reality that cannot be changed, it is up to you to find the silver lining(s). You must count your blessings. And I believe we always have blessings, however few or infrequent they may be. The key is to recognize them and to be thankful for them. Even though you may not be able to control certain parts of your reality, you can always control your response to them.
Consider the proverbial glass half full/glass half empty question. If you think about it, both answers are correct. The glass is indeed half full. And yet, the glass is also clearly half empty. Since both are correct, the real question then is which answer do you choose? You must choose half full. This answer is not only correct; it is the only path to happiness.
I try my best to count my (many) blessings each and every day of my life. I’m pretty certain that there have been days when I failed to do so. After all, I’m only human. But I know how lucky I am. I truly do.
Several weeks ago I drove cross-country from Arizona back to my home state of Massachusetts. I was on the road for five days and I had a lot of time to do a lot of thinking. I thought about many things. I thought about how lucky I was to be able to make this trip. I thought about how lucky I was to have lived (and survived) the past seven years in Arizona, far away from a reliable support system. I know that there are people with CF who have not been so lucky. I know that there are people like me, born around the same time as I was born (or later), who fought their own valiant battles against CF but are no longer alive to tell their story.
A cross-country road trip is the perfect means by which to experience the beauty of America first-hand. There is so much beauty in America. There is so much beauty in the world. There is so much goodness in the world. And I am so lucky to still be alive at 37, a full quarter century after the “expiration date” the doctors had set for me. I am so lucky to be able to experience all of this beauty and goodness.
As I state in my profile, “I am burdened with much, but blessed with more”. I know that I would not be alive today were it not for my positive attitude. I am absolutely convinced of the power of positive thinking. And while that power alone will not cure my disease (or any other), its force cannot be underestimated.
I am also convinced of the connection between mind and body. I know that when I allow myself to get down or discouraged, my physical symptoms worsen. Conversely, when I think positively and carry an optimistic worldview, I actually feel better. My disease is still there, but I feel empowered to conquer it.
Each of us has our own personal reality. Within this reality are things that cannot be changed, no matter what we do or how hard we try to change them. For example, CF is part of my reality. I wage a battle against my disease every day; I fight the good fight and play the role of good soldier. But no matter how hard I fight, I can’t rid myself of this enemy inside me. Hopefully a cure for CF will be found in my lifetime. I am hopeful and confident that this will be the case, but until then, CF is part of my life, like it or not.
This brings me to an important point. When you have a part of your reality that cannot be changed, it is up to you to find the silver lining(s). You must count your blessings. And I believe we always have blessings, however few or infrequent they may be. The key is to recognize them and to be thankful for them. Even though you may not be able to control certain parts of your reality, you can always control your response to them.
Consider the proverbial glass half full/glass half empty question. If you think about it, both answers are correct. The glass is indeed half full. And yet, the glass is also clearly half empty. Since both are correct, the real question then is which answer do you choose? You must choose half full. This answer is not only correct; it is the only path to happiness.
I try my best to count my (many) blessings each and every day of my life. I’m pretty certain that there have been days when I failed to do so. After all, I’m only human. But I know how lucky I am. I truly do.
Several weeks ago I drove cross-country from Arizona back to my home state of Massachusetts. I was on the road for five days and I had a lot of time to do a lot of thinking. I thought about many things. I thought about how lucky I was to be able to make this trip. I thought about how lucky I was to have lived (and survived) the past seven years in Arizona, far away from a reliable support system. I know that there are people with CF who have not been so lucky. I know that there are people like me, born around the same time as I was born (or later), who fought their own valiant battles against CF but are no longer alive to tell their story.
A cross-country road trip is the perfect means by which to experience the beauty of America first-hand. There is so much beauty in America. There is so much beauty in the world. There is so much goodness in the world. And I am so lucky to still be alive at 37, a full quarter century after the “expiration date” the doctors had set for me. I am so lucky to be able to experience all of this beauty and goodness.
Tuesday, July 20, 2010
Genesis
This inaugural post marks the beginning of my blog.
I am a 37-year-old (soon to be 38) survivor of cystic fibrosis (CF). The title of my blog, "MoreThan84", is a direct reference to my survival. Forty-eight hours after my birth in 1972, I was diagnosed with CF. At that time, the doctors told my mother that I would not live more than twelve years (i.e. not beyond 1984). But I'm still here...hence, "MoreThan84".
My primary objective in writing this blog is to help people, specifically those battling CF. I hope that by sharing my personal experiences and the knowledge that I have acquired while fighting this deadly disease, I can serve as a source of hope and inspiration to others with CF. I am especially excited about the prospect of helping those younger than I; I want them to know that they can live a full, rich life and that there is indeed good reason to be optimistic.
I welcome "followers" of my blog, and also welcome comments, questions, suggestions, thoughts and ideas from readers. I hope that my blog can be of some value and that it can make a positive impact in the lives of others.
JFK
July 20, 2010
I am a 37-year-old (soon to be 38) survivor of cystic fibrosis (CF). The title of my blog, "MoreThan84", is a direct reference to my survival. Forty-eight hours after my birth in 1972, I was diagnosed with CF. At that time, the doctors told my mother that I would not live more than twelve years (i.e. not beyond 1984). But I'm still here...hence, "MoreThan84".
My primary objective in writing this blog is to help people, specifically those battling CF. I hope that by sharing my personal experiences and the knowledge that I have acquired while fighting this deadly disease, I can serve as a source of hope and inspiration to others with CF. I am especially excited about the prospect of helping those younger than I; I want them to know that they can live a full, rich life and that there is indeed good reason to be optimistic.
I welcome "followers" of my blog, and also welcome comments, questions, suggestions, thoughts and ideas from readers. I hope that my blog can be of some value and that it can make a positive impact in the lives of others.
JFK
July 20, 2010
Subscribe to:
Posts (Atom)