Wednesday's Walk Down Memory Lane

I have been trying to cut down on my computer time because I hurt my right arm somehow and if I use the mouse or keyboard much it causes me a lot of pain. I thought I would participate in Lynnette Kraft's Wednesday's Walk Down Memory Lane. Blogger isn't let me do any pictures, for some reason's, so I can't put the Memory Lane button.

I wanted to share my memory of my diagnosis. When we were first married in 1987 my husband told me to try his doctor because he thought something was wrong and my doctor wasn't "catching it." His doctor immediately sent me to see a Pulmonologist for testing. I was working as a secretary/receptionist for a law office then and took a few hours off to see the dr. for my results.

They told me the tests showed that I had Bronchiectisis. I remember returning to the office and trying to work as usual, but feeling shock. A secretary asked about the results and questioned me how I could return to work and concentrate after just being told this.

I hadn't had time to research it yet - we didn't have computers at all of our desks at that time. I remember feeling like I must be having a dream and would wake up and it would all be a nightmare. I remember wondering how long I would live and what was ahead.

When I didn't respond to treatment they sent me to a more reknown hospital, Hershey Medical Center. I had great pulmonologists there, but I never responded to treatment for them, either, and they were always having meetings and trying to figure out what to do with me. They called me their "mystery patient."

When I kept getting worse they sent me to Johns Hopkins for further testing and second opinion, wondering if something additional was going on. They did a bronchoscopy right away and said they cleaned hordes of pseudomonis (a particularly nasty bacteria that you never can quite get rid of, once you have it) out of my lungs. They said that pseudomonis is commonly found in the lungs of Cystic Fibrosis patients, so they would admit me for IV antibiotic treatment for 2 weeks and send my blood to a genetics lab for diagnosis.

I remember when I got the call. (The hospital was 1 1/2 hrs away, so they told me over the phone.) I had Cystic Fibrosis (and Bronchiectasis). I felt like I was punched in the gut. The doctor was asking me "Are you okay? You're very quiet. This is a big and difficult thing to hear. Tell me what you're thinking." I felt all kinds of things at once. I felt immediate relief that we finally knew what had been wrong with me all of these years (I was 43 at the time!) and knew what we were dealing with. Suddenly so many things made sense that hadn't before.

On the other hand, I wondered once again how long I would live. I only had known one person with Cystic Fibrosis and he had died at age 21. Which caused me to ask how I could have it when I'm so much older??? She explained that I had one regular CF gene and one CF gene that was mutated and those people take longer to diagnose and usually live longer than the others. One group is called A-typical and one is Typical. I'm A-Typical.

That was 6 years ago. It's still hard to believe that I have CF. I'm not young and skinny! It's been hard for me to do the daily maintenance that is required, to take that part seriously. I'm told that is normal for someone dx later in life with CF.

Anyway, it's not a happy story or a funny story, but it's my Walk Down Memory Lane this week. Thanks for visiting!