Back to the hospital

I’m convinced my lungs looked at a calendar and are trying to make sure they hit every Jewish holiday.

Last week I did feel the tiniest bit better, even though it wasn’t anything to write home about. Sunday, however, I inexplicably started feeling worse. I hoped it was just a weird random bad day, but since then my oxygen has been dropping, I’ve been incredibly short of breath, and I’ve gotten significantly more congested. I was supposed to have a follow up appointment next week, but I emailed my doctor and they told me to come in today instead. They also mentioned that I might need to be hospitalized.

I felt pretty defeated yesterday. Hospital was NOT the word I wanted to hear, particularly since my last hospitalization was so long and brought so little improvement. It’s extremely frustrating to once again end up feeling WORSE while on IV antibiotics instead of getting better. It’s also scary, because we keep trying different treatments, and keep not seeing any significant improvement. It’s really hard to keep fighting when you never seem to get a win.

My lung function numbers ended up being even worse than I expected. Somehow over the course of a week, while on IV antibiotics, I managed to drop from 48% to 42%. At that point I knew there was no way out of being hospitalized, but I did ask my doctor what they can accomplish in the hospital that we haven’t already tried at home. She pointed out that in the hospital they have full access to all kinds of testing and other diagnostic procedures to help figure out what’s going on, and that it’s much easier for them to make quick medication adjustments and try different treatments. They tried to admit me directly from clinic, but there were no beds available. The only other way to get admitted was through the ER, but thankfully they had mercy on me and told me to go home and enjoy Purim instead. They’ll try to direct admit me again tomorrow, and if they’re still unsuccessful I’ll start yet another ER adventure after I finish my Purim seuda.

They really don’t know why my health has been so poor and why I’ve been so unresponsive to treatment. It feels like we keep throwing darts hoping to hit a target, except I think we might also be throwing the darts while blindfolded. We tried an antifungal and got rid of the fungal infections, we tried an antibiotic and got rid of the MRSA, we tried IV antibiotics to treat the pseudomonas… and yet, I’m still getting worse. So now we’re trying to figure out what is it that we’re NOT treating that could be causing these problems. There are currently 2 top contenders. One possibility is a pulmonary embolism, a blood clot in the lungs. We actually tried to schedule a CT scan today to rule that out, but my lovely insurance is dragging their heels in approving it, so I guess they’ll just have to pay for it in the hospital instead. The other possibility is aspiration pneumonia. Even with medication I have terrible reflux, and they’re concerned that I might be inhaling reflux in my sleep since I use a feeding tube overnight for extra nutrition and hydration. We’ve explored surgery to combat the reflux, but my health hasn’t been stable enough to move forward with it. However, one thing we can do is change my G-tube to a G/J-tube. A G-tube pumps the supplement directly into my stomach, whereas a J-tube would bypass the stomach and pump it into my intestines. This could reduce overnight reflux issues, and apparently is a very easy change to make. So that will probably happen while I’m inpatient.

I didn’t have the energy or brain power to pull together a Purim costume, but fortunately I did have an unused super fun hat stashed away in my closet. And when I pulled it out I discovered that it also came with a tail, so that was an exciting bonus! I made it to shul for megillah reading tonight, and tomorrow I plan to go to shul again before joining Martelle and her family for an early seuda. At least I have the chance to get my Purim on before embarking on the next round of medical drama!

After megillah reading, Sarah Bienenfeld reminded me that Purim is the time of v’nahafoch hu, of things turning around, and of sudden unexpected salvation. Hopefully this hospitalization will be fueled by the power of Purim and I’ll see my own v’nahafoch hu soon!