Monday, August 18, 2008

Late Diagnosis

I am still trying to wrap my mind around the fact that I have cycstic fibrosis,even though I have had it since birth.For someone to be diagnosed in their 50's is indeed rare!But in the research I have been doing in the last couple of months,I have found others online who were also diagnosed later in life.In reading,I have learned that CF is a multisystem disease with a range of symptoms and complications that can be similar to other diseases...asthma,allergies,chronic bronchitis,chronic sinusitis,pneumonia.In my 30's,I was diagnosed with bronchiectasis.I had surgery then to remove a good part of my left lower lung.I remember the doctor said how awful that part looked...and after surgery,I got pneumonia on the right side.That might have been a missed chance at diagnosis.There were probably many missed chances,as I have had many doctors and surgeries over the years.I think for the most part,I always "appeared healthy" and as I have just found out while having testing done three weeks ago,I am one of about 15% of CFers to be pancreatic sufficient.I do not have to take enzymes to help my pancreas digest food and absorb nutrients.I was told however,that this can change,so I will be monitored for this.Being pancreatic sufficient could have been another reason I wasn't diagnosed earlier.Pancreatic insuffiency can also cause CF related diabetes (CFRD),which I don't have.I do have gastro-esophageal reflux disease (GERD),which is common for adults with CF.I have actually been treated for this for several years.More to come on what led to my diagnosis...

AND,oh the freedom I have felt over the weekend...freedom from the every 8 hr.IV's...Our son,daughter-in-law and babies came Sat.and we went to a park for awhile...it was great going to church again on Sunday...and today,I got a few groceries and we went to a hog roast tonight.Fun to be out again!!I still have lots of treatments to do in a day,but don't feel quite so tied down.Please pray that I will regain more energy each day and that my lung function will begin to improve!!
Thanks.

3 comments:

Anonymous said...

Oh wow! I am just amazed by your story. Thanks for sharing this with all of us.

I will be praying for you.

The Hummels said...

So glad that you've started to share your story and start a blog! :)

schdebby71 said...

Marcia, Seems like yesterday we just saw you. Surprised at your diagnosis. Praying for you!
Much joy.....Glenn and Debby