Fail

Well that was a fail.

Right after my last update, I started running a low grade fever. My cough also increased and I became more short of breath. By the time I saw the doctor last week, my pulmonary function numbers were basically back to pre-hospital levels. I wasn’t surprised, based on how I was feeling, but it was still disheartening. I also saw a physical therapist and tried a brief stair stepping exercise, which I couldn’t even finish and found completely exhausting. Apparently that was surprising and I shouldn’t be this short of breath, even with where my pulmonary function numbers are at. Clearly IV antibiotics didn’t accomplish much, so my doctor thinks it’s less about infection and more about inflammation and air trapping. Air trapping happens when inflammation and/or mucus starts blocking off small airways and air can’t be easily or completely exhaled. The leftover air keeps the lungs inflated and makes it harder to inhale, causing shortness of breath. Air trapping is also the kind of thing that can start to snowball once it starts and be difficult to get back under control.

The problem is there’s no quick and easy treatment for air trapping. Additionally, the last few times I’ve tried steroids for inflammation we didn’t see a significant response. This time we’re trying a stronger, longer dose of steroids, and looking into pulmonary rehab. Pulmonary rehab, like most forms of rehab, isn’t exactly a good time and requires a lot of effort. I’m not looking forward to it, but then again I don’t really enjoy not breathing, so I guess it’s the better option. I’m still trying to find a local (aka not Philly) pulmonary rehab program, so if anyone is familiar with any please let me know!

We also decided that the antifungal treatment wasn’t making any difference in my symptoms. It was definitely effective in terms of eradicating the aspergillus, but clearly that didn’t actually impact my lung functioning. So we gave up on that and stopped the antifungal medication.

I still have the PICC line, but it’s pretty much at my discretion at this point. I did ask to increase the IV fluids for a bit to help keep things loose in my chest, but I’m running out of patience and will probably have them pull the PICC this week. My skin never does well with tape, and I’m at the point where I don’t feel like dealing with rashes and blisters for such little return anymore. At least that will be one less annoyance in my life!

Getting there

As of last week my pulmonary function numbers were back to baseline, though not QUITE at their highest. I wasn’t feeling as good as I usually do after 3 weeks of IV antibiotics, but my doctor didn’t think it was worth doing an additional week, since I did improve and the standard for treatment is 10-21 days. We decided to keep the PICC line in for 2 more weeks though and continue IV hydration as needed. If I maintain lung function after 2 weeks, we’ll pull the PICC line; if I start to slide, we’ll look into putting in a port, which is a surgically implanted, permanent IV. The advantage of a port is we can easily access it whenever I need IV hydration or antibiotics without having to put in a PICC line every time. The disadvantage is that it has a risk of blood clots, just like a PICC line, and everyone is anxious after the blood clot drama in December. Even if I hold on for the next 2 weeks though, I’m pretty sure I’ll be getting a port sometime soon. It’s just not feasible to keep putting in a PICC line every few months, and the port will be far more convenient.

I’m still very tired, though my endurance seems to be slowly improving. My new thing is I’ve been getting a lot of headaches recently, which isn’t fun. I don’t know if it’s because I haven’t gotten allergy shots while sick and seasonal allergies are creeping back up on me, or if my sinuses are acting up again and it’s time for another round of sinus surgery. I’ll be resuming allergy shots soon, and if that doesn’t help I’ll follow up with my ENT.

Despite all this, I’ve been fortunate to have a bunch of visitors, and have been able to get out occasionally for some low-key fun. Hopefully I will continue feeling better and will manage to be a semi-normal person for at least part of the summer. My recovery has been slower than usual, but I AM recovering, and hopefully I’ll be able to stay away from respiratory infections and hold it together for more than a few weeks this time around. Fingers crossed!