Tuesday, January 19, 2016

Liveblog of a Non-Routine Visit to the Doctor

     The sinus infection I've had since November didn't respond fully to the two different types of antibiotics my doctors prescribed, and as of Saturday, it was clear that this infection has found its way into my lungs (specifically, just my right lung).  I called the Transplant Coordinator yesterday and told her that my symptoms included a sharp pain in my lower right rib cage area, and raspy breathing sounds.  She scheduled me for the first available appointment, which was this morning.  I share now with you a liveblog of the 2 hour and 14 minute experience.

8:00 am: My Driveway

I am leaving for the appointment and giving myself ample time to arrive. I am so grateful I live only 20 minutes away from my doctors at a hospital that is so highly regarded.  A pink and blue cloud spans the my entire field of vision after my second left turn.  At least the drive there will be pretty.

8:22: Stoplight within the Medical Complex

After turning onto the road which encircled the University of Michigan medical complex, I stop at the red light, prepared to go straight onward as I do each time I come here.  I take a moment to look closely at the signs, realizing that many people turn right toward the Cancer Center and various other medical specialty offices.  They never go through this light.  After coming here for one overarching medical issue for 16 years, I've taken for granted all of the other amazing work done by incredible doctors in other areas.  The light turns green.

8:29: Parking Garage

My radio always frizzes out as soon as I drive into the parking garage, but at least my window wasn't so frozen that I had to open my door to get my ticket.  I'm grateful to get a parking spot very close to the entrance as I put my winter hat on to stave off the bitter morning air.

8:35: X-Ray Dressing Room

As I prepare for my chest X-ray, I contemplate the necessity of the final line on this sign.

8:43: Exiting X-Ray Reception, Walking toward PFT Lab on Floor 3

I always take the stairs as much as possible to put these healthy new lungs to good use, particularly on days like this when I feel not-so-great, as a way to gauge "how I'm doing."  Today, after I get to the third floor, my right lung is telling me, "It's good you've come to the doctor."

8:47: Standing Confusedly Between Reception D and Reception C

I momentarily forget which reception area I am supposed to go to.  I could blame the recent renovations, but that's the First Child in me who has to either be right or have a good reason not to be right talking.

8:53:  Reception C Waiting Room

I've filled out this paperwork so, so many times.  Why write something pedestrian when you can write something fun?

Reason for Visit:

9:05:  Inside the PFT "Box"

Results of PFT were as I expected-- a marked dip from last time.  I don't even ask what the numbers were.  Not relevant. I see on the tech's screen that the point at which I inhale and feel a sharp pain during each of the four pulmonary function tests is quite visible as a spike marking a decrease in how much air I'm taking in.  I'm in a "box" (a glass room with a door) because they have all the CF patients do their PFTs in there now, and then thoroughly scrub it down after each test as part of the new anti-infection protocol. 

9:08:  Exam Room
Make myself cough so I can provide a sputum culture.  As I put the lid on the plastic cup and seal it into the bag, I realize I can't remember the last time I did this-- certainly when I had my old lungs, so at least a 17 months ago.

9:11: Technician Leaves Exam Room
My blood pressure is nearly perfect, as usual, and I don't have a fever. I haven't had one during any of this ongoing sinus infection business, so that's a plus.  Isn't it?  I don't know.  In my book, fever = bad. 

9:18: Doctor, Nurse, & Social Worker Enter Exam Room

My medical team is like a small family-- teasing each other about shoe and jewelry choices, asking me which movies I've seen recently (Ex Machina-- definitely worth your time and money) and overall just making me relaxed about the fact that yes, my lung function is down, yes, we need some better answers about what is going on in my lung, and yes, that means I need to have a bronchoscopy done ASAP. 

9:33: Nurse Remains in Exam Room to Schedule Appointments

After listening to my breathing and confirming that the pain I'm feeling is from either inflammation or fluid, the next step has to be going inside the lung with a camera and taking a few tiny snips of it to get a full picture of what to do next-- likely IV antibiotics that I would take three times a day for three weeks.  But that remains to be seen.  My transplant coordination nurse is on the phone making all the necessary appointments, and also schedules a CT scan for me, prior to the bronch.  This is because I told the doctors that my sense of smell is G-O-N-E.  I also have trouble tasting food.  My family couldn't believe that I couldn't tell the difference between a chocolate jelly bean and one designed to taste like dog food.  An appointment with an ENT who specializes in CF is scheduled for sometime next month.  Maybe he or she can help restore 2/5 of my senses!

9:54:  Blood Draw Lab Waiting Area

The lab is packed.  This is a good time to text my wife a few updates about what is going on.  She will need to take tomorrow off in order to take me to the bronch, since I can't drive at all the rest of the day.

10:10:  Blood Draw Lab

I have had my blood drawn several hundred times in my life.  I still never look, and apparently my non-verbal communication is frequently alarming, as I am almost always asked "Are you alright?" by the person drawing my blood. I am alright, but somehow I've failed to get accustomed to needles and blood despite years of experience.  Maybe I should just start watching the whole procedure instead of staring off in the opposite direction.

10:14:  Parking Garage

I'm grateful yet again for living so close to my doctors-- because I'll be coming back here less than 24 hours.  I hope to leave with answers to two things:  a) What is the best course of action to get my lungs back on track? And 2)  Has anyone ever really reused a nipple marker?

I bet if I ask the second one while under sedation, the question won't seem that out of the ordinary.


  1. Waiting with baited breath to hear the answer to both questions. Pretty sure I'm most interested in the first answer but the second is a very close second....

  2. Hoping everything turns out well tomorrow! Will you be giving any updates then?

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  4. Also, I enjoy how often you stop to think about how thankful you are for the little things. Do you often do this, or just when you're focusing on documenting your surroundings?

  5. I try to be mindful of this kind of thing at all times. In this case, I was mostly focused on the clock and accurately documenting the time. When I drove up to the stoplight, I realized I'd never really thought about what was to my right. And that led to the gratitude for not only my care team, but all of the fantastic ones at U of M. :)