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....
Showing posts with label pulmonary fibrosis. Show all posts
Showing posts with label pulmonary fibrosis. Show all posts
Monday, June 12, 2017
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.
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