Praise then darkness, and creation unfinished

I had a CT scan of my lungs this morning, then saw the pulmonologist. The CT scan looks OK, considering: "Again seen is diffuse bronchiectasis with tree-in-bud opacities seen in the right upper lobe, right middle lobe and lingula. The areas in the right upper lobe may have improved in the interval."

The low-tech exam was also reassuring: the doctor used a stethoscope to listen to my chest, and had me cough while listening. She heard no wheezing (or other problems), which is good. So, she told me to keep using the flutter valve twice a day, and come back in six months.

And, some non-medical notes:

I discovered that it's possible to accidentally cancel a Lyft ride by putting your phone in your pocket after the driver has picked you up. The driver suggested I text Lyft to tell them I hadn't meant to cancel, but I couldn't figure out how to do that. After a minute or two of frustration, I asked the driver if he would take cash instead, and he said yes. So I handed him $25, and repeated the destination address so he could enter it in his GPS. I try to carry some cash on general principles, but this isn't something I was expecting to need, or be able, to pay cash for.

Mount Auburn was also having some trouble with their medical information system: the doctor could see the CT scan, but only on the machine in her office, not the one in the exam room. Fortunately, I didn't need to see the images. Given their computer problems, I was particularly pleased to have a list of my current medications on my phone, to show the doctor's assistant. I don't yet have my follow-up appointment, but that's not because of today's computer problems, but that they aren't set up to book follow-up appointments that far in advance.

I took transit home, which is cheap and makes sense to me, from many years of practice. I stopped at Flour to get something to eat, 7-11 to use their no-fee ATM to withdraw some more cash, and CVS to pick up a prescription, and was home in time for lunch. It was effectively two stops rather than three, because the 7-11 and drugstore are both near the bus stop where I was changing from the bus to the trolley.

The results of last month's pulmonary function test turned up on MyChart today; it apparently took this long for the raw data to get to the "reading physician." (So, the delay is not, as I thought weeks ago, a MyChart problem.)

"SPIROMETRY: Prebronchodilator measurements do not meet ATS criteria for acceptability or reproducibility. Postbronchodilator, FEV1 [forced expiratory volume)] is reduced without an obstructive pattern. The presence of bronchodilator responsiveness cannot be determined [because we couldn't get useful numbers before I used the inhaler].

"LUNG VOLUMES: Normal.
DIFFUSION CAPACITY: DLCO is normal. [per Wikipedia, DLCO is the extent to which oxygen passes from the air sacs of the lungs into the blood.]

"SUMMARY:
1. Normal lung volumes and diffusing capacity. Reduced FEV1 in postbronchodilator measurements.. See note above.
2. No prior PFT lab data for comparison."

I had the pulmonary function test, and then the follow-up appointment with the pulmonologist.

The PFT was annoying and uncomfortable, in part because I had a lot of trouble breathing in and out smoothly, while only through my mouth. fAfter I tried that for a while, with three different mouthpieces, we gave up and went to the next test. Somewhere in there I muttered that it shouldn't be possible for me to fail a medical/lab test. For the second test, the technician had me put the mouthpiece in my mouth again, gave me (extra) oxygen through the mouthpice, and measured my breathing. Test three was using my albuterol inhaler, waiting ten minutees, and redoing the first set of measurements, and it was significantly easier after the inhaler.

They sent those results to the doctor, and I went upstairs to her office. Based on the PFT, there is definitely some obstruction in the lungs. The albuterol improved the results by significantly more than for the average person.

I do not have the weird infection (Mycobacterium avium complex) that they were culturing for, nor any other infection beyond the staph aureus that she treated with an antibiotic in January. Dr. Koster was going over this morning's results and what they mean, and I had to ask about that culture, which I guess means that yes it was that boring. She referred to it as "testing negative for tuberculosis," a word she was carefully avoiding at the first visit (most people wouldn't recognized the name "mycobacterium"), but "we are sure you don't have TB" isn't going to worry people the way anything that sounds like "possible TB, we'll known in three months" might.

The doctor suggested restarting the steroid inhaler, but when I said I didn't want to because of the increased risk of lung infections, she didn't try to persuade me. I have a follow-up appointment in three months, but if I'm feeling the same or better than I am now, we will reschedule that for September.

Also, I should wait longer between using the inhaler and using the flutter valve, for better results.

I asked about the neurologist's recommendation of a sleep study, and the pulmonologist said that she can't put that through without any relevant symptoms, just a comorbidity. cattitude was in the room with me, and confirmed that I am not snoring, and do not sound as though I'm having trouble breathing, only coughing, so no sleep study.

Cattitude, who came along to keep me company, and I stopped in the hospital cafeteria for lunch afterwards, and ate our lunch on a bench outside the hospital. I had roast squash and roast potatoes, those being what looked appealing. We stopped at Lizzy's on the way home, because I felt like I deserved ice cream after all that.

I had telemedicine with my pulmonologist this morning. It transpired that I was supposed to have had bloodwork at the same time as the sputum samples, but neither I nor the Mt. Auburn registration office noticed. So, I'll be doing that next week, when I'm in that part of Cambridge anyhow.

One of the three samples showed some S. aureus, so Dr. Koster prescribed a course of antibiotics. When she asked what antibiotics I should, or shouldn't, be taking, I told her that I've done well with tetracycline, based on which she is prescribing the related doxycycline. I will need to be careful about what I eat when for the next ten days. The list of things to be particularly careful about includes yogurt, which will be inconvenient.

Doxycycline is commonly used to prevent malaria, so the instructions and notes include "avoid being bitten by mosquitos when trying to avoid malaria," followed by advice on how to avoid contact with mosquitos. I am also supposed to minimize exposure to direct sunlight, which will be fairly easy this time of year.

( more details )

I have gone to Mt. Auburn three days in a row to give them sputum samples, which they will test to figure out whether I have an obscure infection. Now I can wait 8-12 weeks for those results. I was briefly alarmed by an automated MyChart message with results from the first day's sample, just because I wasn't expecting to have any results this soon. But I called the doctor's office, and they confirmed that it's normal to run those tests before trying to culture the same.

That does mean that they got a usable sample on Wednesday, which both I and the techician had been unsure of.

Also, that's three days in a row of going out and about, and standing around in the cold waiting for transit, so I'm probably going to stay close to home tomorrow.

This was with a different tech than yesterday and the day before, and he switched from a medical mask to a better mask before having me sit down and start breathing the nebulized salt water. (The other tech did so on her own Wednesday, but argued with me before putting on a good mask yesterday.)

I saw the pulmonologist today, with adrian_turtle there for emotional support and to help me remember things) and what the doctor said was reassuring. She showed us the CT scan images, described what they showed, and told me that I have what looks like mild bronchiectasis, and the treatment is to do things to clear my airways.

To clear my airways, I'm supposed to take guaifenisin, then two puffs of the inhaler, then "10 huff breaths" into the flutter valveacapella device. When we went to order that device online, as Dr. Koster recommended, Adrian noticed that the contraindications include ruptured eardrum. So I just sent the doctor a message asking whether having had a ruptured eardrum several years ago, which healed as well as they ever do, is relevant here. That happened before I moved to Massachusetts, and isn't in my records at Mt. Auburn.

Next week (or maybe the week after, given holidays) I will go to the hospital three times, on consecutive days, so they can take sputum samples, which will be sent off to be cultured, with results in 8-12 weeks. (It's not the lab, the "mycobacterium avian complex" are inherently slow-growing.) I have a follow-up visit in three months, with a pulmonary function test before I talk to the doctor. If it's positive, we will discuss whether I should take multiple antibiotics every day for a few months, or just wait and keep an eye on things.

To clear my airways, I'm supposed to take guaifenisin, then two puffs of the inhaler, then "10 huff breaths" into the flutter valve. When we went to order the flutter valve online, as Dr. Koster recommended, Adrian noticed that the contraindications include ruptured eardrum. So I just sent the doctor a message asking whether having had a ruptured eardrum several years ago, which healed as well as they ever do, is relevant here. That happened before I moved to Massachusetts, and it's not in my records at Mt. Auburn.

ETA 12/18: Dr. Koster said I should order and start using the device, and let her know if I experience any sensitivity in my ears when I start using it. So I have done so, for delivery 12/22, that being the earlier of the two options on Amazon. (The guaifenisin should be here on the 20th.)

Dr. Koster also said I should stop using the steroid inhaler (because it can increase the risk of infection), and just use the albuterol. I'd be using that twice a day, every day, as part of clearing my lungs, and I'm thinking as needed and once at bedtime until I hear back from her about the flutter valve.

After reading the instructions carefully a couple of times, and getting cattitude to read them carefully, I have used the first dose of the inhaler, and rinsed my mouth afterwards as instructed.

It's a good thing the instructions note that I might not notice the powder entering my mouth or lungs, because I didn't. I think I followed the instructions properly, but I should reread them again before the next dose (in the morning).

It's also a good thing Cattitude was here to help me get the thing open the first time, because removing the cap for the first time needed a stronger grip than I have.

I am supposed to use this twice a day, whether or not I've been coughing, and can use the albuterol as a rescue inhaler if I'm coughing despite the Pulmicort.

I have a 30-day supply, and Carmen wrote the prescription with one refill. I have an in-person follow-up with her on December 14th, which will be long enough for me to get an idea of whether it's working. The follow-up is in person so she can measure things about my breathing, something that wouldn't work by telemedicine.