Wow, what a week. What many people who don't have a chronic illness don't understand is that having a chronic illness is a full-time job. Going to doctors' appointments and dealing with insurance is a full-time job, one that you never get a break from.
This past week was one of those weeks in which I had doctors' appointments every day. On Wednesday I had my much awaited pulmonolgy appointment. Now currently, since I've been so sick, I have been seeing the pulmonolgist every week or every two weeks. So a pulmonology appointment was nothing special. The thing that made it special was the fact that I was due to have a full set of PFTs (Pulmonary Function Tests). I was supposed to to do them weeks ago, but right before I was scheduled to do that, I ended up in the hospital. I was a bit nervous about doing them, but also interested in the results. My last set was back in April. I was much healthier then. Before that, I hadn't had PFTs in almost two years. One of the reasons for this was that I was that I was between pulmonologists, but the main reason is that I detest PFTs. Usually I avoid doing them like the plague. I don't mind spirometry, but hate full-set PFTs. Full-set PFTs are different from spirometry. It is more involved. I find them very triggering to my lungs. The last time I had done a full set of PFTs, prior to April, was at Boston Children's Hospital for my cataract surgery. My lungs were so triggered that I not only ended up in the ER, but in the ICU. At that point, my PFTs were good (at 70%). In April, after seeing Dr. Cunningham-Rundles, I bought the bullet and did the full-set PFTs that Dr. R. (my pulmonologist) had wanted me to do since first starting to see him in March. In April, my PFTs were 35%. This shocked me because I honestly felt I was doing well, better than I had when I did them in Boston. This is not horrendous, but it is a big drop from 70%. When Dr. R. looked at the results, he said they were good. Now, I didn't understand this. To me, less than 50% is not good. It means that less than 50% of my lungs are functioning properly. Since Dr. R. was relatively new to my care, I thought that maybe he had nothing to compare it to. Maybe I was just overreacting; however, when I sent the results to Dr. Cunningham-Rundles, she also thought that such results were alarming and that more testing should be done.
Over the past three months, things have definitely gotten worse and my lungs have made a serious decline. I have gone from needing 2 - 3 liters of oxygen occasionally to needing 4 - 5 liters continuously (more if I'm walking around or active). I can no longer even tolerate pulse oxygen without my sats dropping. As much as I dreaded doing the full-set PFTs, I was interested in seeing the results and comparing them to those in April. I expected them to be somewhat worse; however, the actual results shocked me.
As is normal for full-set PFTs, I started with spirometry. After blowing twice, the nurse left the room to consult the doctor and my previous PFT results. When she came back, she told me they were lower than my previous ones, but again, I had expected this. I didn't really think anything of it. I repeated the test four more times, to make a total of six times. I then attempted the helium testing, but didn't make it through the full test. I got my results, then waited for the doctor. As I looked at my results, I was shocked. Yes, they had gone down, but I had not expected such a significant drop. My PFTs had gone down from 35% to 14%. I looked at the feedback loops to see if maybe I hadn't done them right, though I've been doing PFTs since I was 13. The feedback loops were good. I then looked at the values since I had done them so many times. When doing PFTs, they take the best value. All the values were within 0.02 of each other. Based on this, the results were accurate. Then, Dr. R. came in, looked at my results, and said they were not valid, that there was no way my lung function had declined so much, and that the results couldn't possibly be an accurate representation of my lung function. I was shocked. How could he essentially just throw them out? How could they not be valid? Unfortunately, as shocked as I was with the results and his assessment of the results, I didn't get a chance to ask him why he thought they were invalid. In addition, he was only in the room for approximately five minutes, leaving me to make a follow-up appointment for two weeks. I felt like a deer in the headlights, unable to make heads or tails of the situation.
All the way home, everything bounced around in my head. 14%! Oh my goodness! I felt Dr. R. should not only be concerned, but should be referring me to specialists. Why had my lung function declined so significantly and what were we going to do about it? I'd never heard of invalid PFTs, and I had been doing them for over 15 years. I'd done the test six times, all with the same result. How was this invalid? It did not make sense to my biological and research mind. Yet, I thought maybe I was making a bid deal out of nothing. So now I am stuck with not knowing what to do. People who also have vast experience with this have told me that they have not heard of invalid PFTs, and 14% is an extremely alarming thing, but if my doctor doesn't see a problem, what do I do? I can't fix it myself. I don't even know what's wrong.
Prior to this, I had considered going to Mass General for a consult. If I ever need a transplant, that would be where I'd go. I considered making an appointment there or if I had difficulty, presenting myself at the ER, letting them run tests and figure out what was wrong. As I wasn't in acute distress I didn't feel the ER was an appropriate action. I didn't think they would admit me or transfer me just based on low PFTs. I didn't feel my low values were because I was currently sick. I was at a norm for me, well what has become my norm in the past few months. I wasn't struggling to breathe. As I struggled not knowing what to do and alternately freaking out and trying to stay calm, I somehow got through the night. I decided my best course of action was to try to get an appointment at Mass General. I wasn't in acute distress, so nothing needed to be done immediately. I reasoned that my lungs had not changed from the day before or even two weeks before. The only change was that now I knew the value. The next day after getting the run around of going from department to department, I made an appointment at the general pulmonary clinic. Mass General does not have one pulmonary department like most hospitals, but many different specialized pulmonary departments. I had no idea which one I needed. Unfortunately, the soonest appointment they have is October 25th. I don't know what I'll do until then. I have to hope my lung function holds up and I don't get worse. I guess if I start to get worse, I could try to find a way to get to Mass General and present to their ER rather than one here, but I'd rather not do that. It's very complicated as I have no one to take me there.
It's such a conundrum. I wish someone would tell me what to do. I don't want to harm myself or risk my health if I need immediate medical attention, but I don't know when that is the case. usually you would consult your doctor and have them make these decision, but that isn't possible. My doctor is completely unconcerned. Maybe I'm overreacting, but my gut says I'm not. I do not know what I should do or how I should fix it. I wish there was a guide book for these things, or someone I could consult, but there isn't. I just have to hope and pray things work out as they should.
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