Friday, October 10, 2008

Finally,a diagnosis

In May of 2004,I was hospitalized with a MRSA infection and I missed the last two weeks of teaching.My health seemed to kind of go downhill after that.The following year in May, my doctor did a bronchoscopy,suctioned out mucus and washed out my lungs and said I really needed to think seriously about quitting teaching because my lungs look so bad.Again,I missed the last two weeks of school.And that summer,I made the decision to "retire" and concentrate on taking care of my health.He did two more bronchoscopies over the next year and a half.In theory,cleaning out the lungs and starting "fresh" is a good idea,but it is an invasive procedure and for me,it was futile.Within a day or two,I was back to my usual coughing self.The dr.also had me start using the percussion vest.After my 3rd bronchoscopy,I decided to change doctors at this point to get another opinion.A lady in our church has a lung disease called aspergillosis,and I knew she really liked her doctor,so I made an appointment with him.My first appointment with him was a year ago in Oct.He had me do my first ever pulmonary function test and my FEV1 score was 58%.He did the whole CT scan of lungs and sinuses in high resolution.He thought I might have immotile cilia,the newer name being PCD (primary ciliary dyskenesia),which is basically the same thing as Kartagener's.I googled it and researched and thought it fits me pretty well.(You know how you can google and try to diagnose yourself!)I told him I wanted to know for sure.You have to do a cilia biopsy and need a special microscope.The disease is somewhat similar to CF.After my third visit with him,he decided to send me to a CF doctor from the Cleveland Clinic because he wanted another opinion.So a couple of weeks later I went there,armed with all the info.about PCD,expecting him to set up the cilia biopsy,etc.Instead,he reviewed my history,asked lots of questions,then said his gut feeling is that I have CF,not PCD.This was before even listening to my lungs or doing an exam.It took me by complete surprise!!He sent me directly over to Akron Children's Hospital to have genetic bloodwork done,sweat test,another blood test to rule out Alpha-1 antitrypsan.There I am in a children's hospital waiting room with cartoons on TV,play table,etc. and then I was escorted to a lab room with a cute bus table to get blood drawn and arms wrapped in pretty pink polka dot wrap stuff for the sweat test.I also had to do a culture test so they could see if any bugs are growing in my lungs.

So then we had to wait a few weeks for the test results.It was June 4th...The doctor called me with the news.My sweat test was not terribly high,he thought it was a false positive,the Alpha-1 test was negative,as he had suspected.But the culture showed pseudomonas areuginosa,a very common CF bug colonized in my lungs.I've learned that once you have this,it's almost impossible to get rid of.The genetic testing showed that I have one mutation that is very common in 70% of CFers,called delta F508.The other gene mutation is not as common.So all of a sudden I learn that I do indeed have cystic fibrosis.It was a bombshell...I had seriously thought everything would come back negative.It was not what I wanted to hear!But on the other hand,I finally had a diagnosis.Now I KNOW why I am like I am.

I went back to see him in a few weeks.He went over all the tests and talked about the medicines I will probably be on and why.He said he wanted me to go to the Akron CF adult center.He said the doctors there are excellent and it is an accredited CF center.Also,it's the closest center for me.So he was going to talk to the doctors and set up an appointment for me.It seemed to take forever and I wanted to get going and get started on the right treatment.My chest had been aching all spring and summer and I had no energy whatsoever.Also my joints were hurting really bad,especially my knees,fingers and shoulders(joint pain can be related to CF).So I was very ready for the appointment.Finally,it was set for July 25...

And now I'm off to celebrate my perfectly imperfect life,because it's my birthday!

1 comment:

Anonymous said...

Well, HAPPY BELATED BIRTHDAY!! I hope you enjoyed your day! I am just amazed at how difficult your life has been with all your health issues. Since our college days, a yearly greeting at Christmas time certainly didn't keep me abreast of health matters! I feel so much more in touch now since your blog. Thanks for sharing your story. May God continue to walk with you on this journey.