Man, it has been a long week. And during the entire week I felt like crap.
I can't really eat much....with this disease it is difficult to breathe, and difficult to eat. For some reason I always feel full. I guess all the coughing and inflammation makes it more difficult.
I have coughing spells that last for minutes at a time. I cough while laughing, while talking, while resting...hell, I will cough while I'm sleeping, waking myself up. I have bags under my eyes.This disease sucks...and there is no cure. It's like I am just waiting to die.
I apologize...I tend to feel bitter at times. I don't mean to whine...but I miss the life I once had. I miss the mountain biking. Hanging out at the beach. I miss the gym. I miss the treadmill and the elliptical machine. I miss the 10k's and half marathons. I even ran one once and got one of those 26.2 stickers on the back of my car. And now I can't even make it up a flight of stairs. What the hell happened to me? I made good choices in nutrition. I took care of myself. I never drank to excess. I was a fucking vegetarian...and now THIS?
It has been two years last week...that's right, that was my anniversary. My anniversary date when I was first diagnosed. I remember it well....I guess I should look at the bright side. That night two years ago, I was given anywhere from 2-4 years to live. That was two yeas ago....and I am still here. Not my time yet, I guess....but I know it's coming.
It's obvious I haven't adjusted well. I want to....Sure, I really want to. But I don't know how yet. I want to enjoy the time I have left, if it is possible. I guess the key is learning how to live with this....and I still don't know how. But I a lifeline today....I got a phone number. A phone number to a local Pulmonary Fibrosis support group. I'm going to give them a call. I will admit that I need help....so I'm gonna do something about it. Today. Well, that's my rant....
Monday, June 12, 2017
Sunday, June 4, 2017
Time....what time?
3 to 4 years.
I have checked out other websites, the American Lung Association, Mayo Clinic. They all say things like, 2 to 4 years, 3-4 years, 2 to 5 years...but its all the same; no difference. Initially, it's a shock....when you are in your twenties, you always think you'll live forever. Once you reach your forties and early fifties, you know you're gonna go one day, but it's off into the future. But if you are in your early fifties, you exercise 6 days a week, you don't eat red meat, you never smoked, and both of your parents are healthy and in their seventies, you figure that you at least have about three decades of life left. Not 3 years.
If I had known what was going to happen, I could have let loose a little. Maybe I should have loaded up on french fries and Jack Daniels instead of fruit and veggies. Maybe I should have smoked like a chimney. I just don't get it. The other day I was on Facebook reading about a man who had just turned 111.That's right, this man had just turned 111 years old. He lives in Austin, Texas. They asked him what kept him alive all of these years. You know how he replied? Chasing women, smoking a cigar every day and having a shot of whiskey every morning. What the hell? I did everything I was supposed to do. Went to college, went to grad school, got a good job, bought a house in the suburbs, exercised daily, married a hot Colombian woman. And I wind up with THIS?
Don't get me wrong. I am happy for this 111 year old man. He has survived a lot. He's outlived most if not all of his relatives. Which is good, I guess. But I can't help but be a little envious....I will not outlive my parents. And you know, that might be a good thing. They have always been here as long as I have been alive. I couldn't bear to see them go. Sounds kinda selfish, doesn't it?
The bottom line is it does not matter what you do. It is what it is. My best shot is to make the most out of what I have right now; and I am gonna try. I'm really gonna try. The way I figure it is this: when you are once deemed terminally ill, you can take one of two roads. You can look at it as a death sentence, or you can look at it as liberating. I want to look at it as liberating. Right now, I don't know how in the hell to do THAT. But I have to try. How can this liberate me? Will it make me feel free to say things I never felt comfortable saying? How in the hell is this supposed to liberate me? It's just something I gotta work out. Just writing this blog is liberating; I mean, sure, nobody is reading this, but it feels good just to get a lot of stuff out of my system, to vent. I will have to liberate myself really soon....I was given 3-4 years when I was diagnosed, and that was 2 years ago. My condition is slowly deteriorating. Every couple of months, the coughing gets a little worse, the dizziness gets a little worse, the shortness of breath gets a little more intense....there is no doubt my clock is ticking. If I can manage to get a lung transplant, it will only buy me a few years, max. So I know what the deal is. The question how will I spend the time I have left?
I have checked out other websites, the American Lung Association, Mayo Clinic. They all say things like, 2 to 4 years, 3-4 years, 2 to 5 years...but its all the same; no difference. Initially, it's a shock....when you are in your twenties, you always think you'll live forever. Once you reach your forties and early fifties, you know you're gonna go one day, but it's off into the future. But if you are in your early fifties, you exercise 6 days a week, you don't eat red meat, you never smoked, and both of your parents are healthy and in their seventies, you figure that you at least have about three decades of life left. Not 3 years.
If I had known what was going to happen, I could have let loose a little. Maybe I should have loaded up on french fries and Jack Daniels instead of fruit and veggies. Maybe I should have smoked like a chimney. I just don't get it. The other day I was on Facebook reading about a man who had just turned 111.That's right, this man had just turned 111 years old. He lives in Austin, Texas. They asked him what kept him alive all of these years. You know how he replied? Chasing women, smoking a cigar every day and having a shot of whiskey every morning. What the hell? I did everything I was supposed to do. Went to college, went to grad school, got a good job, bought a house in the suburbs, exercised daily, married a hot Colombian woman. And I wind up with THIS?
Don't get me wrong. I am happy for this 111 year old man. He has survived a lot. He's outlived most if not all of his relatives. Which is good, I guess. But I can't help but be a little envious....I will not outlive my parents. And you know, that might be a good thing. They have always been here as long as I have been alive. I couldn't bear to see them go. Sounds kinda selfish, doesn't it?
The bottom line is it does not matter what you do. It is what it is. My best shot is to make the most out of what I have right now; and I am gonna try. I'm really gonna try. The way I figure it is this: when you are once deemed terminally ill, you can take one of two roads. You can look at it as a death sentence, or you can look at it as liberating. I want to look at it as liberating. Right now, I don't know how in the hell to do THAT. But I have to try. How can this liberate me? Will it make me feel free to say things I never felt comfortable saying? How in the hell is this supposed to liberate me? It's just something I gotta work out. Just writing this blog is liberating; I mean, sure, nobody is reading this, but it feels good just to get a lot of stuff out of my system, to vent. I will have to liberate myself really soon....I was given 3-4 years when I was diagnosed, and that was 2 years ago. My condition is slowly deteriorating. Every couple of months, the coughing gets a little worse, the dizziness gets a little worse, the shortness of breath gets a little more intense....there is no doubt my clock is ticking. If I can manage to get a lung transplant, it will only buy me a few years, max. So I know what the deal is. The question how will I spend the time I have left?
Saturday, June 3, 2017
Congratulations-YOU'RE FUCKED!!
Life has a way of really kicking your ass when you're down. And it was kicking mine.
This blood clot put me out of commission; I was given a pair of crutches and told to wait. But wait for what? They already found out what was going on. I figured they could get me some blood thinners and my wife and me would be out the door. Well, it wasn't that simple.
So I waited. For a couple of hours. Felt like years. They put me in a wheelchair and rolled me back to the imaging room for something called an HRCT. Its supposed to be more accurate than a standard x-ray. They told me that whenever they find a blood clot in your body, they always want to make sure you don't have any in your chest...too close to the heart. It made total sense...they made me lie flat on my back and passed me through some tube thingy and sent me back to my bed in the ER. It felt like another eternity. Well, the ER doc comes back looking about as white as a sheet. He pulled up a chair and explained to me why I was short of breath. Why I was always coughing. Why I weighed 220 in January and only 165 now.
"You have pulmonary fibrosis".
"I have pulmonary what?"
"Pulmonary fibrosis. Your lungs are scarred and it affects your breathing. The scar tissue in your lungs is reducing the level of oxygen in your blood. Its why you are tired and dizzy."
He then explained exactly what the findings of the scan meant. The impression said things like, "UIP, honeycomb lung, no ground glass opacities." I looked at the report; it looked like Greek to me. He referred me to a pulmonologist and finally let me go home.
I didn't understand what was happening....the doctor tried to make everything as plain as possible, but I needed to have all this information broken down into little pieces. I needed to have some questions before being sent to my new doctor. So, I did what anybody else does nowadays...I googled it.
Usual interstitial pneumonia (UIP) is a form of lung disease characterized by progressive scarring of both lungs.[1] The scarring (fibrosis) involves the supporting framework (interstitium) of the lung. UIP is relentlessly progressive, usually leading to respiratory failure and death. Some patients do well for a prolonged period of time, but then deteriorate rapidly because of a superimposed acute illness (so-called "accelerated UIP"). The outlook for long-term survival is poor. In most studies, the median survival is 3 to 4 years.
3 to 4 years.
This blood clot put me out of commission; I was given a pair of crutches and told to wait. But wait for what? They already found out what was going on. I figured they could get me some blood thinners and my wife and me would be out the door. Well, it wasn't that simple.
So I waited. For a couple of hours. Felt like years. They put me in a wheelchair and rolled me back to the imaging room for something called an HRCT. Its supposed to be more accurate than a standard x-ray. They told me that whenever they find a blood clot in your body, they always want to make sure you don't have any in your chest...too close to the heart. It made total sense...they made me lie flat on my back and passed me through some tube thingy and sent me back to my bed in the ER. It felt like another eternity. Well, the ER doc comes back looking about as white as a sheet. He pulled up a chair and explained to me why I was short of breath. Why I was always coughing. Why I weighed 220 in January and only 165 now.
"You have pulmonary fibrosis".
"I have pulmonary what?"
"Pulmonary fibrosis. Your lungs are scarred and it affects your breathing. The scar tissue in your lungs is reducing the level of oxygen in your blood. Its why you are tired and dizzy."
He then explained exactly what the findings of the scan meant. The impression said things like, "UIP, honeycomb lung, no ground glass opacities." I looked at the report; it looked like Greek to me. He referred me to a pulmonologist and finally let me go home.
I didn't understand what was happening....the doctor tried to make everything as plain as possible, but I needed to have all this information broken down into little pieces. I needed to have some questions before being sent to my new doctor. So, I did what anybody else does nowadays...I googled it.
Usual interstitial pneumonia (UIP) is a form of lung disease characterized by progressive scarring of both lungs.[1] The scarring (fibrosis) involves the supporting framework (interstitium) of the lung. UIP is relentlessly progressive, usually leading to respiratory failure and death. Some patients do well for a prolonged period of time, but then deteriorate rapidly because of a superimposed acute illness (so-called "accelerated UIP"). The outlook for long-term survival is poor. In most studies, the median survival is 3 to 4 years.
3 to 4 years.
A mystery....
I put up with the coughing for months. From that January all the way to the beginning of summer. I was hacking like there was no tomorrow. And I was guzzling cough drops like candy. I figured that I was getting older, and this nagging cough of mine was just a part of life. I never smoked; it was obvious I didn't have pneumonia; I figured maybe it was just a part of getting older. I had no clue as to what was happening in my body. And neither did my primary care physician. I was totally in the dark, until exactly 2 years ago, today.
That day, I woke up in intense pain behind my left knee. I figured , "What the hell is it now?" I went back to my PCP and told him of my new malady. The pain was faint for about a week, but on this particular day, the pain was so intense I could barely stand. I went over my new symptoms with my PCP, and he suggested that I probably had a blood clot and that I should go to one of or ER's nearby. My wife drove me and I had a scan of my left leg...and it turns out my PCP was correct. I had a huge blood clot behind my left knee.....no wonder it was the size of an apple back there....it hurt like shit. But at least I knew what was going on. The blood clots explained everything...the shortness of breath, the coughing...they ARE symptoms of blood clots. I couldn't figure out why I had lost 53 pounds in 6 months, but everything else added up. Blood clots, right? Wrong.
That day, I woke up in intense pain behind my left knee. I figured , "What the hell is it now?" I went back to my PCP and told him of my new malady. The pain was faint for about a week, but on this particular day, the pain was so intense I could barely stand. I went over my new symptoms with my PCP, and he suggested that I probably had a blood clot and that I should go to one of or ER's nearby. My wife drove me and I had a scan of my left leg...and it turns out my PCP was correct. I had a huge blood clot behind my left knee.....no wonder it was the size of an apple back there....it hurt like shit. But at least I knew what was going on. The blood clots explained everything...the shortness of breath, the coughing...they ARE symptoms of blood clots. I couldn't figure out why I had lost 53 pounds in 6 months, but everything else added up. Blood clots, right? Wrong.
Signs.....
It hit me like a ton of bricks. It was two years ago, and it's still fresh in my mind.
I should have known something was up. I lost 50 pounds in six months. I could not stop coughing. And I was always out of breath. I could not figure out just what in the hell was going on. I was in the gym six days a week; I did cardio and lifted weights. I was looking good..That January, I was 5-11, 220 pounds...my arms were huge. I was in the best shape of my life. I felt food, and looked it, too. But during that winter, I noticed something....a nagging, dry cough. It didn't produce anything. It was just a nagging, dry cough. I couldn't figure it out, so I went to my doctor.
"Pneumonia."
"Pneumonia?"
"Yep. I'll get you some antibiotics."
Biggest pills I had ever seen. Went through me like a damn choo-choo train. I had the worst diarrhea ever. I puked until there was no tomorrow. But I still had that goddamn cough. It wouldn't go away. I had a followup with my PCP, told him what was going on, and he prescribed another round of antibiotics. Same thing: puking, diarrhea, yadda, yadda,yadda- and that damned cough! Just what in the hell was going on?
I couldn't get rid of the cough, so I just kept a big bag of Ricolas nearby, and gave up on my doctor. I wasn't exactly dying from pneumonia, even though that cough was nagging the hell out of me. I figured that I would slack off the gym routine and relax a bit. Besides, I didn't have the wind or the strength I had before. I figured maybe I should relax for a while, so I did. Over the spring, the coughing got so bad that I didn't bother to notice that my clothes where getting too big or that I was having a hard time just walking up a flight of stairs; I didn't notice that I was having a tough time simply walking out to my car in the parking lot. If I didn't have pneumonia, just what in the hell was going on?
I should have known something was up. I lost 50 pounds in six months. I could not stop coughing. And I was always out of breath. I could not figure out just what in the hell was going on. I was in the gym six days a week; I did cardio and lifted weights. I was looking good..That January, I was 5-11, 220 pounds...my arms were huge. I was in the best shape of my life. I felt food, and looked it, too. But during that winter, I noticed something....a nagging, dry cough. It didn't produce anything. It was just a nagging, dry cough. I couldn't figure it out, so I went to my doctor.
"Pneumonia."
"Pneumonia?"
"Yep. I'll get you some antibiotics."
Biggest pills I had ever seen. Went through me like a damn choo-choo train. I had the worst diarrhea ever. I puked until there was no tomorrow. But I still had that goddamn cough. It wouldn't go away. I had a followup with my PCP, told him what was going on, and he prescribed another round of antibiotics. Same thing: puking, diarrhea, yadda, yadda,yadda- and that damned cough! Just what in the hell was going on?
I couldn't get rid of the cough, so I just kept a big bag of Ricolas nearby, and gave up on my doctor. I wasn't exactly dying from pneumonia, even though that cough was nagging the hell out of me. I figured that I would slack off the gym routine and relax a bit. Besides, I didn't have the wind or the strength I had before. I figured maybe I should relax for a while, so I did. Over the spring, the coughing got so bad that I didn't bother to notice that my clothes where getting too big or that I was having a hard time just walking up a flight of stairs; I didn't notice that I was having a tough time simply walking out to my car in the parking lot. If I didn't have pneumonia, just what in the hell was going on?
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