Hey,
I am 22years old and I have CF. I am new here and have never known there was a web page like this for CF! wow! I was dx when I was 12. I have been in the hospital ClubMed about 3 times a year since I was 13 14. Now my CF doctors are having a hard time getting me better. I cough up allot of mucus after my treatments such as my Vest nebs, and so on. Sometimes I get 250cc's in a day. My PFT's have droped from being 96% to 30% in such a short time. My CF doctor has me on 4 Vest treatments a day and Xopenex 3 times a day and Pulozyme 2 times a day and allot of inhalers and other breathing treatments. I am also on Hypertonic Sailne 3 times a day and Pulocourt. I have had a heard time keeping my weight on. I am on 15 enzymes with every meal. I have a G tube that the GI doc that is going to be putting a J-tube in also. Due to the weight loss and GI issues.
My CF doctor now has me on 3 to 6L of oxygen all day. Due to my shortness of breath and low oxygen sats. With out my oxygen I run as low as 88 and I get very cold. So what I am upset about is that my CF doctor and CF lung doctor have sent me home on this oxygen sometimes on 6L with a mask. They tell me that there is not much they can do for me. They took a chest CT scan and I had deep mucus plugs in my left lower lung. My chest X-rays do not look as good as they did. However, there is no infection as of yet the doctors say that my lungs just full of mucus. Many doctor have told me to start thinking about getting a lung Tx.
I just don't know anymore what I should do. Walking has become an issue. Beucase I end up so washed out. I am washed out most of the time. What would you do? Think about doing a Tx? or what?
I am 22years old and I have CF. I am new here and have never known there was a web page like this for CF! wow! I was dx when I was 12. I have been in the hospital ClubMed about 3 times a year since I was 13 14. Now my CF doctors are having a hard time getting me better. I cough up allot of mucus after my treatments such as my Vest nebs, and so on. Sometimes I get 250cc's in a day. My PFT's have droped from being 96% to 30% in such a short time. My CF doctor has me on 4 Vest treatments a day and Xopenex 3 times a day and Pulozyme 2 times a day and allot of inhalers and other breathing treatments. I am also on Hypertonic Sailne 3 times a day and Pulocourt. I have had a heard time keeping my weight on. I am on 15 enzymes with every meal. I have a G tube that the GI doc that is going to be putting a J-tube in also. Due to the weight loss and GI issues.
My CF doctor now has me on 3 to 6L of oxygen all day. Due to my shortness of breath and low oxygen sats. With out my oxygen I run as low as 88 and I get very cold. So what I am upset about is that my CF doctor and CF lung doctor have sent me home on this oxygen sometimes on 6L with a mask. They tell me that there is not much they can do for me. They took a chest CT scan and I had deep mucus plugs in my left lower lung. My chest X-rays do not look as good as they did. However, there is no infection as of yet the doctors say that my lungs just full of mucus. Many doctor have told me to start thinking about getting a lung Tx.
I just don't know anymore what I should do. Walking has become an issue. Beucase I end up so washed out. I am washed out most of the time. What would you do? Think about doing a Tx? or what?