Nightwriter
New member
Hi Anna,
When I was nearly 21, I got pneumonia that wouldn't go away. I kept getting sick until they found I had pseudomonas and later bronchiectasis. My doctor said he thought I had an adult form of C.F. I thought he was wrong. I got sick every 3 or 4 months which I got antibiotics for and was hospitalized every 4 or 5 years.
That is until I got much much worse. More IV antibiotics. More hospitalizations. Tobi all the time. Major drug resistance. Lung function went steadily down.
In the beginning, I had no treatment of any kind. Then years later, a second doctor gave me a nebulizer, nothing else. Not even mucus clearance.
My life and the course of the disease changed drastically when I met a doctor who believed that inflammation and an asthma component is what triggers exacerbations. When she started treating me for this -- no more IV meds, or hospitalizations, off Tobi (except occasionally for an infection), drug sensitivity returned, lung function started going steadily up.
So your question is what do I wish doctors had done differently? I wish the doctors treated the asthma/inflammation component that most CF'ers have which is ignored by most doctors. My present doctor told me had I met her years ago, I would have been able to preserve a lot of the lung function I had lost, by not being treated properly. I would have less infections and would not have suffered all that damage.
I wish that I would have had the foresight a lot earlier to find a doctor that could help me. It's a big world out there and I never even realized it. I mistook a good personality for a good doctor. And since the 2 main pulmonary doctors I had treated me pretty much the same, I assumed all doctors treated this disease in the same way. Get sick, then get an antibiotic. So why look anywhere else?
I never let the disease stop me from pursuing my dreams. I drove cross-country when I was 24 to move to California. I lived in a fraternity house that was a real Animal House. My first job I sat in a room with 8 smokers. If I knew then what I know now, is that I would still have pursued my dream, but I wish I knew that my surroundings were making me sick. I thought exacerbations were random and I thought I couldn't prevent them. I didn't know I could set limits. It took a year before I asked the smokers to smoke outside the room and people were happy to accomodate me.
I wish my doctors would have warned me about some of the uneducated choices I was making. I wish my doctors looked at me as a whole person and not just a pair of lungs.
I wish that my doctor would have followed up on my first PFT tests which mentioned mild but significant asthma. I wish my doctors did something about my complaints of a post-nasal drip instead of doing nothing. I wish my doctors tested me for allergies and taught me the importance of how a healthy environment with good clean air matters more than drugs. I wonder why when I had numerous lung and infections and was declining rapidly, my doctor at the time did not order a CT scan of my sinus (which was 100% blocked on one side.)
The point is you are young and as you say still have a mild form of the disease. This is so great. You are asking the right questions. You can really help yourself by preventing damage. And it's good that you know your diagnosis. As I got older, I kinda knew I had C.F. --they found one gene years ago, and found the second gene this year.
You can achieve your dreams...but it will certainly be an easier road if you learn how to keep exacerbations to a minimum.
When I was nearly 21, I got pneumonia that wouldn't go away. I kept getting sick until they found I had pseudomonas and later bronchiectasis. My doctor said he thought I had an adult form of C.F. I thought he was wrong. I got sick every 3 or 4 months which I got antibiotics for and was hospitalized every 4 or 5 years.
That is until I got much much worse. More IV antibiotics. More hospitalizations. Tobi all the time. Major drug resistance. Lung function went steadily down.
In the beginning, I had no treatment of any kind. Then years later, a second doctor gave me a nebulizer, nothing else. Not even mucus clearance.
My life and the course of the disease changed drastically when I met a doctor who believed that inflammation and an asthma component is what triggers exacerbations. When she started treating me for this -- no more IV meds, or hospitalizations, off Tobi (except occasionally for an infection), drug sensitivity returned, lung function started going steadily up.
So your question is what do I wish doctors had done differently? I wish the doctors treated the asthma/inflammation component that most CF'ers have which is ignored by most doctors. My present doctor told me had I met her years ago, I would have been able to preserve a lot of the lung function I had lost, by not being treated properly. I would have less infections and would not have suffered all that damage.
I wish that I would have had the foresight a lot earlier to find a doctor that could help me. It's a big world out there and I never even realized it. I mistook a good personality for a good doctor. And since the 2 main pulmonary doctors I had treated me pretty much the same, I assumed all doctors treated this disease in the same way. Get sick, then get an antibiotic. So why look anywhere else?
I never let the disease stop me from pursuing my dreams. I drove cross-country when I was 24 to move to California. I lived in a fraternity house that was a real Animal House. My first job I sat in a room with 8 smokers. If I knew then what I know now, is that I would still have pursued my dream, but I wish I knew that my surroundings were making me sick. I thought exacerbations were random and I thought I couldn't prevent them. I didn't know I could set limits. It took a year before I asked the smokers to smoke outside the room and people were happy to accomodate me.
I wish my doctors would have warned me about some of the uneducated choices I was making. I wish my doctors looked at me as a whole person and not just a pair of lungs.
I wish that my doctor would have followed up on my first PFT tests which mentioned mild but significant asthma. I wish my doctors did something about my complaints of a post-nasal drip instead of doing nothing. I wish my doctors tested me for allergies and taught me the importance of how a healthy environment with good clean air matters more than drugs. I wonder why when I had numerous lung and infections and was declining rapidly, my doctor at the time did not order a CT scan of my sinus (which was 100% blocked on one side.)
The point is you are young and as you say still have a mild form of the disease. This is so great. You are asking the right questions. You can really help yourself by preventing damage. And it's good that you know your diagnosis. As I got older, I kinda knew I had C.F. --they found one gene years ago, and found the second gene this year.
You can achieve your dreams...but it will certainly be an easier road if you learn how to keep exacerbations to a minimum.