Shelbyville
New member
Hello:
This site is fantastic and full of information not available anywhere in the world. The members are generous in the sharing of information regardless of the personal exposure for the benefit of all. As another member put it lurking and gathering information beings I am quite new to CF not even one year since dx. I am 52 with mild CF and that's where I will start with what information and experiences gathered. I wont get into the ignorance of doctors and inability to see some people do have brains w/o the MD education! I dx'ed myself and my story is in Littledebbies' Who are you in a "Nutshell". Now it's my turn to rant / share in the mild CF arena.
I have heard it many times and now believe mild CF is CF and is progressive! Mild will become moderate then severe and we all know what's next. In conversations with the doctors at the clinic I asked some blunt questions about the recent change in replies by Steve @ Ambry as well as the answers from my doctors since the first visit. As recently as 2 maybe 3 years ago it was conjecture (from what I have researched in medical articles) that some people with mild CF will live a normal lifetime w/o any physical effects from CF and pass from another cause even old age. I asked both Steve @ Ambry and the Head of my clinic if they know anyone with my mutations at my age w/o symptoms or know of a real (not conjecture) person at any other clinic. I have not received any replies! Sorry DF508 / R117H 7T,9T are the mutations and I am the senior member with this combo at the clinic. Maybe someone on this site knows of someone who exists at 50 w/o any phyical effects. Mild or not it seems to me it's just a matter of time. I do believe that one can live a long time with mild CF if they take care of themselves.
Anyway from no CF per the Doctors I asked about having CF during the first hospital stay 4/08 for panktus (Acute pancreatitis). As of 4/08 no CF to 3/09 CF w/ Broncx, panktus, osteopina, and now PI as of last week! So for those who want to debate / ignore preventative treatments for mild CF DON'T! If it wasn't for panktus and some stubbornness I would be destroying my lungs w/o any preventative treatments. I get lots junk out of my lungs twice a day 7% HTS and Xopenex. Exercise / running has also helped and that was started 15 yrs ago because I was getting fat and lazy. It aint easy and I don't expect it to get easier (running) however exercise will remain a part of my survival. If your not exercising start it works wonders physically and mentally. I asked my PCP what could be making exercise so hard before the diagnosis. He started treating me for depression and did that wack me out! I told him about the no vas and the 1990 discovery of being a carrier. Anyway enough of that, OH Yea my former PCP! Jerry is right on with exercise if your able.
My clinic and doctors / staff are the best and this makes things much easier.
My heart goes out to those who don't have the opportunities to exercise. Reading many of the sites life long journeys has provided invaluable information and motivation. Thank you for your help!
Feel free about asking me anything short of bank account numbers.
Its a pleasure to find a group of people like you all with a resolve for improvement facing long odds. The positive threads are quite comforting.
Best Regards, Steven
This site is fantastic and full of information not available anywhere in the world. The members are generous in the sharing of information regardless of the personal exposure for the benefit of all. As another member put it lurking and gathering information beings I am quite new to CF not even one year since dx. I am 52 with mild CF and that's where I will start with what information and experiences gathered. I wont get into the ignorance of doctors and inability to see some people do have brains w/o the MD education! I dx'ed myself and my story is in Littledebbies' Who are you in a "Nutshell". Now it's my turn to rant / share in the mild CF arena.
I have heard it many times and now believe mild CF is CF and is progressive! Mild will become moderate then severe and we all know what's next. In conversations with the doctors at the clinic I asked some blunt questions about the recent change in replies by Steve @ Ambry as well as the answers from my doctors since the first visit. As recently as 2 maybe 3 years ago it was conjecture (from what I have researched in medical articles) that some people with mild CF will live a normal lifetime w/o any physical effects from CF and pass from another cause even old age. I asked both Steve @ Ambry and the Head of my clinic if they know anyone with my mutations at my age w/o symptoms or know of a real (not conjecture) person at any other clinic. I have not received any replies! Sorry DF508 / R117H 7T,9T are the mutations and I am the senior member with this combo at the clinic. Maybe someone on this site knows of someone who exists at 50 w/o any phyical effects. Mild or not it seems to me it's just a matter of time. I do believe that one can live a long time with mild CF if they take care of themselves.
Anyway from no CF per the Doctors I asked about having CF during the first hospital stay 4/08 for panktus (Acute pancreatitis). As of 4/08 no CF to 3/09 CF w/ Broncx, panktus, osteopina, and now PI as of last week! So for those who want to debate / ignore preventative treatments for mild CF DON'T! If it wasn't for panktus and some stubbornness I would be destroying my lungs w/o any preventative treatments. I get lots junk out of my lungs twice a day 7% HTS and Xopenex. Exercise / running has also helped and that was started 15 yrs ago because I was getting fat and lazy. It aint easy and I don't expect it to get easier (running) however exercise will remain a part of my survival. If your not exercising start it works wonders physically and mentally. I asked my PCP what could be making exercise so hard before the diagnosis. He started treating me for depression and did that wack me out! I told him about the no vas and the 1990 discovery of being a carrier. Anyway enough of that, OH Yea my former PCP! Jerry is right on with exercise if your able.
My clinic and doctors / staff are the best and this makes things much easier.
My heart goes out to those who don't have the opportunities to exercise. Reading many of the sites life long journeys has provided invaluable information and motivation. Thank you for your help!
Feel free about asking me anything short of bank account numbers.
Its a pleasure to find a group of people like you all with a resolve for improvement facing long odds. The positive threads are quite comforting.
Best Regards, Steven