(I just noticed what it says on the pillow)
Well, the trip was a success and the project went off without a hitch. However, the results that emerged from some of the studies they did on me wasn’t so good.
First , the good news…..
I finally got to meet Dr. Sally Wenzel (up close and personal you might say, considering she analyzed my DNA and probed around inside my lungs). It’s difficult for me to find just the right adjectives to describe how I feel about her, so I’ll just say … I love this women! She’s like my pulmonary physician soul mate. I admire her, not only because she’s an awesome Pulmonologist and research scientist, but mainly because of her fiery personality and the passion she has in trying to understand asthmatics and what makes us tick. And get this….she’s a good listener too! She actually cares enough about what you have to say, that she takes the time to listen. Imagine that.
I think Sally (Dr Wenzel) probably knows more about asthma pathology and the personalities of asthmatics in general, than any non-asthmatic person Ive ever met. It’s absolutely uncanny the things she knows about our disease and how we behave and live. She understands things about asthmatics that they don’t teach you in medical school. Things that you would only know by interviewing thousands of us and immersing yourself in the severe asthma culture. I could spend literally days just talking with her about this subject. We seem to teach each other. I am so lucky that I was given the opportunity to hook up with her. I think we will be friends for a long time.
The accolades don’t stop with Dr Wenzel, there were dozens of other wonderful people involved in this study as well. Here are just a few that Id like to mention by name and position.
Erin———–SARP research coordinator extraordinaire.
Cathrine RN—-Dr Wenzel’s assistant and other right hand
Mat tech——Very cool PFT tech.
Celo tech—–Just one of many super cool people on the bronch team
Trish RN——-A special Nurse. She actually called in on her day off to see how I was doing.
Lindsey RN—–Probably the sweetest Nurse Ive had the pleasure of meeting
Chuck RN——They don’t get better than this “young man”.
Rose RN——-Kind, Kind, Kind!
Michelle RN—-A Super Nurse.
To the above people , Id just like to say Thank You!
In all the years that Ive been in and out of various hospitals and clinics, Ive never come a cross a better team of compassionate and caring medical professionals like those associated with the SARP study, especially the people who took care of me in the Translational Research Care Unit at UMPC after my bronchoscopy. Kudo’s to you guys!
As for the SARP study itself, well, it’s probably the best coordinated and well thought out research experience Ive ever been a part of. With so many ancillary departments involved, like Nuclear Medicine, Pulmonary Functions and Diagnostics , it’s amazing how smooth the whole system runs. Everything is coordinated and timed down to the minute. In the bronchoscopy room, they actually had a group of lab personnel standing by in their running shoes, so that they could literally run the tissue samples over to the lab the moment they they were removed from my body. This method ensures that the samples will be ultra fresh. (I think).
Btw, if you’re not familiar with this part of the Country, the University of Pittsburgh and it’s affiliated medical schools ,hospitals and clinics, is massive in size. More like a small city, I counted at least 4 city blocks of medical buildings 2 and 3 deep. Some the size of mini skyscrapers, all connected through a series of enclosed pedestrian bridges. Pretty neat since it snows here in the winter.
Here’s an abbreviated version of my actual testing itinerary:
Wednesday Afternoon: Completed a ton of questionnaires,did a verbal interview, and did pre&post bronchodilator spirometry, sputum induction attempt.
Thursday: Allergy skin testing (scratch test, not sub q), Full PFT ( lung volumes) pre&post bronchodilator.
Friday: Bronchoscopy prep, ( ie pre-medications and neb treatments), then nasal brushing, then the actual bronchoscopy with brushings and biopsy, but no lavage because of the potential side effects, more pfts
Friday Evening-Saturday,:Monitored in the hospital overnight.
As with any long distance trip , I didn’t eat or sleep very well and I’m totally worn out, but the effort of getting here to Pittsburgh to do this study was totally worth it. Definitively a positive experience and I would gladly return again if asked.
Now for the not so good news….
Because this was the first time Id been bronched since early adulthood, it’s really the first time anyone has ever seen the damage that decades of severe asthma exacerbations had caused. What she saw was lung anatomy that had undergone extensive remodeling. My airways appeared very scarred, stiff and fibrotic in nature…. seems my disease is a little more advanced than previously thought. She actually found it quite amazing that I was still able to function as well as I do, let alone still alive. What was baffling to me, is that she couldn’t find any physical evidence of emphysemic changes that I often thought I had. Seems I have pure asthma with chronic changes. It will be a few more weeks before they’ll have a final report, as they sent bits and pieces of my lung tissue and blood samples to various university labs for analysis
Dr Wenzel recommended that I seriously consider lung transplant somewhere down the road. We all agreed that I’m not even close to that point right now, but that when the time comes, I shouldn’t procrastinate, as the waiting time for new lungs can take up to a year (asthmatics are usually put at the bottom of the list.) My one saving grace so far, is that my blood oxygenation is still really good(probably from all the aerobic exercise I do), and I’m still able to exercise, though that probably won’t be the case forever. Who knows, maybe someday I’ll be able to RUN the Boston marathon … instead of walking it!
Update as of 12-15-2009: Results from the computerized quantitative lung scans, did indeed show significant air trapping.