After three solid months of working out 6-7 days a week and completely cleaning up my diet, I was anxious to find out how my lung functions might be impacted. My genetic condition of Primary Ciliary Dyskinesia has caused bronchiectasis (a widening/scarring of the airways that leads to increased infections). Those repeated infections have left me at about 62% of the lung function that someone else my same age, weight, height, gender, etc., is expected to have. I’m not happy at 62%. I’ve been told it’s extremely difficult to regain what’s lost over a lifetime but my competitive spirit just sees that as more of a reason to try harder.
I’m enrolled in a “Natural History of Bronchiectasis” study at the National Institutes of Health in Bethesda, Maryland. The purpose of this research study is to examine the natural history of bronchiectasis and hopefully identify inherited and immune (the body’s infection defense system) factors that may explain why certain individuals have these infections. What it means for me as a patient is that I get first class medical care from the most talented medical professionals in the world. They, along with my equally talented pulmonologist in Chicago, have my back. I will never take that for granted and am eternally grateful for all they’ve done for me.
NIH Appointment Recap
My most recent appointment at NIH was held on August 18, 2016. My morning started at 5:30 a.m. (UGH!) with a workout in my hotel room. Not a lot of space but lucky for me…T25 doesn’t require a lot of room OR equipment! I knew a good workout would wake up my lungs and give me energy for the day ahead!
At 7:00 I made my way to the main Clinical Center building on the NIH campus for a pathology appointment where blood was drawn to look for inflammation markers, liver functions, and other overall health indicators.
Next stop was for a CT scan. I was hoping to use this as nap time but technology has really improved how quickly the scan can be completed and I was out of there in less than 10 minutes. The results would be sent up to my doctor’s clinic where we would discuss them at the end of my appointment.
At 9:00 I checked in to the OP7 clinic for routine measurements (blood pressure, weight, temperature, oxygen saturation levels). Afterwards I met with Dan Goldstein, Senior Clinical Physician Assistant, to talk about what’s happened with my health since I last saw them in February. We talked about the bronchial artery embolization procedure I had to undergo in May and the bout of bronchitis I came down with in July. It’s been quite the year! Hey, lungs…are you trying to upstage the January wedding?!? Stop it!
The moment I had waited for finally arrived at 10:00 – pulmonary function tests. It’s a lot of deep breaths and breathing out as hard and as fast as I can. This was the moment of truth. I gave it my all, even asking for a fourth attempt on one test so I could get a better number.
After we were done with everything at the computer, I suited up for my 6 minute walking test. During this test, I walk up and down the hallway for 6 minutes. At the end, they measure my total distance and then note my starting versus ending heart rate, oxygen saturation levels, and feeling of exertion. I felt good – really good.
With all the results in, it was time to go talk with the lead physician, Dr. Kenneth Olivier, Dan, and Sandy. Things did not go as I had hoped. My lung functions were unchanged from February. Not ALL bad, however, considering that means I didn’t lose any ground even after having gone through a surgical procedure and getting bronchitis in July. My 6 minute walking test was improved – oxygen saturation levels didn’t drop so much after the walk and my heart rate was lower throughout. A closer look at my CT scan revealed some worsening of bronchiectasis in my lower left lobe since last year’s scan.
My medical team was impressed with the changes I’ve made and encouraged me to not give up! “Keep on doing what you’re doing,” they said. Exercise and good nutrition are probably some of the best things I can do to take care of my lungs and overall health.
It would be easy to be discontent with the results of this appointment. But then I remember how hard I worked the last three months and how amazing I feel now. Success cannot always be measured by a number or a grade. My body has gone through major changes. The weight loss has made room for muscle gain which makes it easier to complete almost any task. Sure does feel good to not feel like I’m going to pass out when I walk up a flight of stairs! And then there’s the fact that my husband says I’m “less crabby.” Big win right there!
This appointment has made me more determined to look into other things I could be doing to bump up my numbers. I may take up swimming since I’ve heard it does good things for increasing lung function. Maybe I’ll take up yoga too. I want to explore herbal supplements I can add in that might naturally reduce inflammation or discourage the growth of bacteria.
Oh, and I’m probably going to have some ice cream to celebrate…but then it’s back to business as usual!
August 21, 2016
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