What do Kermit the Frog, Billy Joel, and Conan O'Brien all have in common besides being entertainers?...Give up? They have all been awarded honorary degrees at different universities across America without setting a foot on campus (Although I have to admit, Kermit probably deserves it). Meanwhile I have have spent the better part of thirty years as a Cystic Fibrosis patient on the campus of the University of Minnesota (AKA the U of M) going to the doctor, staying in the hospital, volunteering for studies, and being used as a teaching tool for residents and interns- or as I like to call them "rookies". This begs the question...Where is my honorary degree? I feel as though I have earned it. Sweet Lord in heaven, I know some patients and parents who should be awarded a friggin' PhD! They could call the degree a Bachelor's of Science in Physician/Patient Relations and Medical Advancement. I'm waiting "patiently"...
Unless you have no idea what sarcasm is, you know I'm kidding (though, an honorary degree would be nice). If it wasn't for the staff at the U of M, I wouldn't be here right now. Actually, the fact that I've spent so much time there gave me an idea for my blog. I've decided to give a glimpse into a part of my life that not everyone understands and some may even fear. People have always asked me what my life is like living with Cystic Fibrosis. Thus I have decided - for my blog and possible future literary masterpiece - to occasionally document different instances of this part of my life. So, with camera and Sunkist in tow, here is a written and visual documentation of my recent appointment at the CF Center of the University of Minnesota Twin Cities Campus...
(For those of you that don't know what Cystic Fibrosis is I have provided this link to the CF Foundation Information Page)
I had just returned from a vacation and was grateful to be home. I made it through my whole trip without getting sick...at least I thought I did. I presume I caught a bug on my return flight because by the time I woke up the next morning, I was coughing up some pretty gross stuff and knew I needed to be seen right away. When my health is on the up and up I only have to be seen every three months, but on the occasion that I do catch a cold or some other kind of "bug" I will call Nurse Coordinators Karen and Evelyn to schedule an appointment ASAP. They are the liaisons between the doctors and patients; scheduling appointments, calling in prescriptions, clashing with insurance companies, and penning medical letters to make certain everyone's needs are met. Both Karen and Evelyn have been at the U of M since I was a little fella and have always worked so hard for all the CF patients there. I cannot praise them enough because they are the backbone of that department and everyone (staff included) would be lost without them. Luckily, I had enough foresight to speak with them and schedule a post-trip appointment prior to leaving for vacation, so within a few days I was headed in to see my other "family".
I arrived at 1:00 PM and checked in for my doctors exam. After receiving the usual stack of paperwork and sputum sample cup (not much left to the imagination there, huh?), I headed up to the fourth floor and Pulmonary Functions Lab. Pulmonary Functions Tests (PFTs) measure different aspects of my lung health. The results of these tests are a large part of what my treatment plan is based on, so this is a pivotal part of my visit. The elevator ride up to the lab is always the worst feeling in the world. I don't care if I am feeling great and am there for a routine visit or I am in-patient at the hospital, I just hope and pray those numbers on the screen are good. It's like gathering the evidence for a criminal trial. If your case is strong and the evidence supports it, you're on parole for another quarter with a few new antibiotics in your pocket. If the opposite is true, you could be sentenced to a minimum of three weeks house arrest on potent IV antibiotics or worse yet, a short stint in "the joint" - aka hospital - until you are deemed healthy enough to return to society.
When I arrive at the lab I hand my paperwork to Denise, a PFT lab tech who greets me with a big smile. She asks me to sit down so she can record my vital statistics(height, weight, oxygen level, and heart rate) before we get started. Her colleague Kevin is also there and, since things are slow at the moment, he is more than willing to record my PFT attempts for this blog. Both Kevin and Denise are great people who are adamant about correct technique during the test not only from a data and research perspective, but for me as a patient. They want me to have the best results possible. It can get a little frustrating at times, but I appreciate their diligence. The actual PFT tests are similar to blowing up a bunch of balloons in a matter of minutes. You get a little winded and light headed. Depending on how you feel that day it can sap out your strength in a hurry. Here is a short video of my attempts. During the last attempt, something pops in my upper body (possibly a rib or some cartilage), so I decide that might be a good time to throw in the towel:
Despite how rundown I feel, my stats are not bad. My FEV1 - the amount of air that blows out in the first second of each attempt and my FVC - the full amount of air that I blow out during each attempt - numbers are a little lower than usual (I don't usually share my lung function numbers publicly), so I assume I will need a short course of antibiotics to help me along. Kevin wishes me good luck and sends me back downstairs.
I let the front desk know I have returned from PFTs and am ready to see the doctor. My nurse, Mandi, brings me in to get my blood pressure, oxygen level and heart rate again. My O2 level is at 98%, my heart rate is at 94 bpm, and my blood pressure is nice and low at 104/66. These are all pretty typical for me. Now its time to head into the exam room and wait for Dr. Joanne Billings.
When Dr. Billings arrives I ask her if I can take her picture for my blog, to which she jokingly responds "I wish I had known!" as she fluffs her hair in preparation. She and I have a great relationship. Even though I will happily see other doctors in a pinch, she is my doctor. She understands me better than anyone on staff. We make decisions together and respect each other's opinions on my health. I know she cares for me as a person and not just as a patient. I can talk about my life and not just my medical status. That is a rarity in this era of medicine and I am blessed to have her around.
We breeze through the formalities like medicine lists, general info, and any new developments. Then we finally arrived at my PFT numbers. After listening to my lungs and examining my test results, her interpretation was much the same as mine; she thought we needed a course of antibiotics to get me through this "bug". We also determined that I should have some vitamin levels checked on my way out, so she wrote an order for that before we went our separate ways. Hooray, I am still on parole!
I was about leave the exam room when Head Respiratory Therapist Anne, who is as tough and stubborn about therapy as she is caring about the patients (and I mean that as a complement), pops in. She needed to notify me of a change in protocol for my airway clearance therapies (ACT). ACT is a therapy I must do multiple times a day. It clears the mucus from my lungs and help prevent respiratory infections. These protocols change occasionally and it is Anne's job to help create, relay and enforce said protocols. She is a tough but fair lady.
Before heading downstairs for my blood draw, I stopped to make my next appointment with the front desk staff. Today I worked with Alan who always takes a moment to talk baseball with me while browsing through the schedule. Mandi swings over one last time to make sure I had everything I needed. You know you are there way too often when the front desk and nursing staff knows you so intimately, but they are wonderful and I couldn't keep anything straight without them. I also ran into my friend Diane who has known me since I first started being seen at the "U" nearly thirty years ago in the pediatric center. We spoke about my sister and how it has been nearly sixteen years since she passed away. The fact that they still reminisce fondly about Angela after all this time says something about my sister and the staff at the "U". Special people like Angie make an impact on others and special people like Diane acknowledge that. They all loved Angie and it makes me so happy when people remember her after so many years.
I arrived at "Vampire-ville" and as I went to sit down for a blood draw I pulled out my camera to take a picture. The lab tech said "Why on earth are you trying to take your picture while I am taking your blood? Do you want to hurt yourself?" I explained to her that I was writing a blog about my visit and wanted to document my blood draw. She smiled and asked another lab tech to take a picture for me so that I wouldn't do something silly like pull the needle out. Smart lady, that lab tech. Right as I was stabbed with a needle, "photo" lab tech guy pointed the camera and joyfully said "Smile!" As you can see from adjacent picture, I was a little confused by his exuberance. Why would I smile when a needle is in my arm? I wonder if that thought went through his head before he took the picture? Oh well, I guess he meant well.
A few red viles later, my blood test was over and I went out to brave the crappy weather and coinciding traffic. I looked at my dashboard clock. 3:34 PM. I consider two and a half hours a pretty quick day with what I had to do. There have been times when I was at clinic for five hours. No one is at fault, it just happens sometimes. New people are added last minute, the PFT lab or other facilities are overbooked. At that point, jamming something dull into my eyeball might seem like more fun, but I have learned to be patient because of it and I consider that lesson a gift. Thankfully, today went rather smoothly and I was out before rush hour on my way back to my other life as a blog writer and extremely sexy husband.
There will be a day in the distant future where these trips will become more frequent, longer lasting and more frustrating. Even now, I try to compare myself to how I was ten years ago which, I fully admit, is not even worth the time I waste thinking about it. The reality is that Cystic Fibrosis is a progressive disease and will slowly take me down a notch at a time whether I like it or not. Thanks to my family at the "U", that won't be for a long, long, time. Maybe I'll be around long enough to earn my honorary degree. Until then, I just have to keep earning my credits.
Thanks to everyone for allowing me to document this day. I greatly appreciate it.