First few days at home

Thanks to the many friends and family who have written to ask how I'm doing. We arrived home on Wednesday evening, after waiting 5+ hours at the hospital for a delivery of oxygen tanks from an outside company. As the morning dragged on, the nurse and case manager assured me that the only thing holding up my discharge was the oxygen delivery. At 11-something the driver said he would arrive around noon. Noon passed, then 1pm. A little after 1, the frustrated nurse manager brought two oxygen tanks she had rustled up. We decided that if the delivery didn't happen by 2pm (the driver assured her he was on his way and would be there by 2!), we would just leave with the oxygen on hand. Two o'clock arrived: still no oxygen. We began the discharge paperwork. Finally, Nurse Allyson wheeled me to the entrance with my oxygen tanks and I got in the car with Leland at 2:45. The case manager later told me that the delivery guy arrived 15 minutes after we left. I have no idea how these companies stay in business.

Our return to town was classic State College. We pulled into the Target parking lot so Leland could get a prescription. As I waited in the car, I saw our friend/neighbor Lara and her daughter walking toward their car, so we chatted for a while. (Their family has had scary close encounters with COVID, so it was appropriate that they were the first family we saw.) When you've lived in a town like State College for 17 years, you can't go anywhere without running into friends. I missed that while living in Hamburg.

We were greeted at home by a few friends and neighbors, cards, balloons, a bouquet and "Welcome Home, Mutti [Mommy]" care package from Lily and the kids she was babysitting, and a delicious dinner. A home health agency set me up with portable oxygen tanks (for going outside the house) and an electric portable oxygen concentrator, which extracts oxygen from the air. When plugged into the concentrator, I'm basically on a 40-foot leash. If I need to go further than that, then Leland moves the concentrator into another room.

It is wonderful to be in my own home with our kitties and to see friends whom I haven't seen in over a year. I can hang out and have conversations with no problem. The hardest part is coming to terms with my substantial physical limitations. For example, I can't walk 10 minutes to my office on campus or anywhere else, for that matter. I often feel disconsolate and overwhelmed by my situation. It's the not knowing how long recovery will take that is so difficult. I've been on supplemental oxygen nearly 24/7 since I arrived home. When I use the pulse oximeter to gauge my oxygen saturation with no supplemental oxygen, the readings are well below 90%, which means I need to get back on oxygen. I am discouraged that I still need so much oxygen because it seemed like I needed less in the hospital. My heart rate is still very high, around 25-30 bpm above normal, even when I am just sitting or resting (in the hospital it had come down to normal range--even getting to the mid-40s while I was sleeping, which is typical for me due to decades of running). 

I have managed to start walking around the house and take showers. The latter feels like a workout and leaves me quite winded. I also ventured out with Leland on a couple of very short walks the past two days. He carries the oxygen and we walk two blocks or so at a glacial pace (due to global warming, glaciers might be faster). He and I are normally brisk walkers; our benchmark for slow walking was set by the women in the rural Salvadoran community where I lived in 2001. Leland says we are not walking quite that slow. Today I got out the house to do a couple of errands with the family. The short walk from the car to the store (on oxygen) felt a bit easier than the previous days.  

I know there are many positive signs and that I can't expect to get better right away. Still, I could very well be looking at months of recovery and there's no guarantee that I'll regain all the lung function I had pre-COVID. A home health nurse will come see me once a week. She came yesterday for the first time. Melanie is a character--very friendly and encouraging, and also prone to over-sharing. (Did I need to know that her husband won't undress for the nurses at the hospital and that this could be a challenge for his upcoming colonoscopy? Perhaps I did.) I learned that she also cared for a PSU professor, Brian Curran, who died some years ago from ALS. 

I've got an appointment with a pulmonologist in a few weeks. I'm hoping he can help with breathing exercises and such (respiratory therapy). I will meet with my new oncologist, Dr. Villaruz, on Thursday in Pittsburgh. She will also be completing FMLA paperwork so that I can take an intermittent leave (weekly workload reduction of X hours). As some of you know, the callous, rule-obsessed, incompetent way that my dean handled my situation and request for a course release added a great deal of unnecessary stress while I was in the ICU. In other colleges at PSU, faculty with a medical crisis are usually told something like "don't worry about teaching this semester" and administrators take care of it. Not in my college. I'll leave it at that. 

Some friends will be organizing a meal train for us soon. Lily is trying out for volleyball this coming week; once we know her volleyball practice and game schedule we will have a better sense of which nights we will need meals. I will share information once it's available. We've really appreciated the meals folks have provided so far!