I'M SO TIRED
Although my attitude is great. Yesterday was my CF Clinic appointment. The best part was driving my car for an hour to and from. Here are the stats:
Weight: 110.4 lbs. (down)
FEV1: 50% (way down)
I explained to them my laborious coughing fits and how I wasn't coughing up that much mucus. And once a week some form of blood appeared. I am now scheduled for a Pre/Post PFT to see if I have reactive airways....I do a PFT with no medications, like albuterol, which opens the airways. Then I do an albuterol treatment and repeat the test. My doctor believes I have major mucus plugging and we need to get them out. Best treatment options, oral steroids for a couple of weeks.
Why all of a sudden Mucus plugs? Plugs are like harden mucus that looks like little casts molds of the airways. When airways sense mucus, they narrow to move the mucus along with more forced air, creating a cough. The airways are clear so they relax. What is happening when I cough now is my airways are pushing at these plugs, nothing is moving so my airways keep tightening, causing an asthma- like affect.
Wait, don't you do breathing treatments to prevent or clear them out? Yes, I do. Pulmozyme is the main drug for this job. Their research shows, the enzyme based drug cuts up the DNA of white blood cells that cause thickening of mucus and decrease mucus plugs. White blood cells are present due to inflammation and mucus (signs of an infection). Airways also constrict when they are irritated or inflamed. Knowing it is a cycle, if I've killed a lot off bacteria, the mucus is down, what else then could be causing irritation??
3 out of the 4 medicines I inhale are irritating to the lungs. I loved how when I was telling the Pharmacist how I reacted to Colistin he casually said, Yes, Of course Colistin will be irritating to the lungs, as you know it was meant to be injected into the blood stream, not inhaled (that's why I mix it with solution). That's right, I'm taking a drug that irritated my airways, but kills the bacteria. So its a 2 part problem/solution. You kill the bacteria, so the irritation or inflammation goes down, but you create irritation by using the drug. Ah modern medicine, suppressing symptoms while not correcting the problem. It's like chemotherapy, it kills cancer, don't mind that it is killing you too.
So given this information I tiredly ask again....I started all these other drugs 3 years ago and have had nothing but problems. I went for 14 years with Albuterol and my vest with minimal problems.....why am I on all these treatments again? I DON'T KNOW AND I'M SO TIRED OF ASKING AND NOT GETTING A RESPONSE OR THE AGREEMENT I WANT....
I'm about to fall asleep...Goodnight!!
Weight: 110.4 lbs. (down)
FEV1: 50% (way down)
I explained to them my laborious coughing fits and how I wasn't coughing up that much mucus. And once a week some form of blood appeared. I am now scheduled for a Pre/Post PFT to see if I have reactive airways....I do a PFT with no medications, like albuterol, which opens the airways. Then I do an albuterol treatment and repeat the test. My doctor believes I have major mucus plugging and we need to get them out. Best treatment options, oral steroids for a couple of weeks.
Why all of a sudden Mucus plugs? Plugs are like harden mucus that looks like little casts molds of the airways. When airways sense mucus, they narrow to move the mucus along with more forced air, creating a cough. The airways are clear so they relax. What is happening when I cough now is my airways are pushing at these plugs, nothing is moving so my airways keep tightening, causing an asthma- like affect.
Wait, don't you do breathing treatments to prevent or clear them out? Yes, I do. Pulmozyme is the main drug for this job. Their research shows, the enzyme based drug cuts up the DNA of white blood cells that cause thickening of mucus and decrease mucus plugs. White blood cells are present due to inflammation and mucus (signs of an infection). Airways also constrict when they are irritated or inflamed. Knowing it is a cycle, if I've killed a lot off bacteria, the mucus is down, what else then could be causing irritation??
3 out of the 4 medicines I inhale are irritating to the lungs. I loved how when I was telling the Pharmacist how I reacted to Colistin he casually said, Yes, Of course Colistin will be irritating to the lungs, as you know it was meant to be injected into the blood stream, not inhaled (that's why I mix it with solution). That's right, I'm taking a drug that irritated my airways, but kills the bacteria. So its a 2 part problem/solution. You kill the bacteria, so the irritation or inflammation goes down, but you create irritation by using the drug. Ah modern medicine, suppressing symptoms while not correcting the problem. It's like chemotherapy, it kills cancer, don't mind that it is killing you too.
So given this information I tiredly ask again....I started all these other drugs 3 years ago and have had nothing but problems. I went for 14 years with Albuterol and my vest with minimal problems.....why am I on all these treatments again? I DON'T KNOW AND I'M SO TIRED OF ASKING AND NOT GETTING A RESPONSE OR THE AGREEMENT I WANT....
I'm about to fall asleep...Goodnight!!