Cystic Fibrosis effects more than just your lungs. Most people don't know that. The mucus will effect many or most of your digestive organs, also. I have one gene with the pancreatic insufficiency trait and another that isn't, but I've been having more digestive problems lately. (My gallbladder was removed years ago.) Today my lab results came back that I am showing mild to moderate pancreatic insufficiency.
What does this mean? Well, in addition to my gazillion prescriptions I'm already taking (you now, 18???), I now need to take enzymes and ADEK's on a regular basis. ADEK's are a specially formed prescription vitamin for CFers. Both of these things are very expensive and we have very lousy insurance. Also FYI, medications for CF tend to be quite expensive. One is $1500/mo, another $3500/mo, plus we're still paying off IV antibiotic's from last year that were $2500/DAY for 15 days!!! But I digress...
Just what we need. I am feeling a little discouraged right now. My husband hasn't had any work in the last week, the economy is a LITTLE BIT on the scarey side, and these expenses just keep going up.
Being a more recently dx (diagnosed) CFer (meaning, dx in the last 5 yrs) and not growing up knowing that I have it, I have the tendency to blow off treatment. It isn't an established habit. When the health maintenance feels so time-consuming and the prescription & other health costs are squeezing the tar out of us, I have the tendency to blow off treatment. I know I shouldn't, but I do.
Anyway, just a little discouraged tonight.
Hopefully my husband will get a call tomorrow that there is work for him. For one thing, we depend on his income and for another, it isn't easy having him around 24/7!!!
Wednesday, October 1
Subscribe to:
Post Comments (Atom)
I am praying for you right now, first that you will have peace and that the discouragment will leave...and then that your hubby will have steady work. I know how important that is...we are experiencing some of that ourselves, and sometimes having faith is easier said than done. But God is good, even during these times.
ReplyDeleteSo, I know all about the GI effects of this disease because my son tested for CF because he has such bowel and URI problems. We were fortunate that his CF test was negative. He had other problems. Anyway, I am curious how you were diagnosed so late in life. I'm medical so excuse my curiousty. It's a part of who I am. I'll keep you in my prayers. Treatments and payments are very stressful that I know first hand. Blessings.
ReplyDeleteWow! Cannot believe how expensive those meds are. I'm so sorry and hope things get better soon.
ReplyDeleteHugs and prayers,
Amanda