...but not for long

Well, I managed a week and a half before going back to the hospital.

Going home ended up being MUCH harder than anticipated. The in-home oxygen concentrators were strong enough to keep my oxygen up while I was at rest, but not during exertion. I had oxygen tanks that were stronger, but I couldn't rely on them because they'd get used up too fast and I needed to save them for going to appointments or for extra-exerting activities. Unfortunately, even just walking to the bathroom was enough to drop my oxygen levels. Not only was this uncomfortable and utterly exhausting, it also meant that I was way less functional than anticipated. I ended up spending most of my time either in bed or on the couch or recliner because I couldn't cope with doing anything else. A lot of the time just talking was difficult because I was struggling so much to get enough oxygen. I was still bringing up LOTS of thick mucus, which meant frequent coughing fits, which was another thing that all too often sent my oxygen plunging. I also woke up coughing every hour or two all night every night, so sleep wasn't going well. And on top of all that, I was dealing with nausea and almost no appetite. I basically spent most of my time curled up in a miserable ball, with the occasional hour or two of feeling somewhat better.

Katherine has been a trooper and a godsend. She's basically been waiting on me hand and foot for the last week and a half, while also having to cope with all the emotions involved in watching me be an utter train wreck. I truly don't know what I would do without her!

I was very torn, because on the one hand I wanted to be in the comfort of my own home, but on the other hand it was so very hard. We already knew within the first few days that I wouldn't be home for long, because it was clear that my oxygen needs would soon be too high to be maintained outside of the hospital. What we did not expect was for my oxygen to abruptly plummet yesterday. For reference, I was discharged on 7 liters of oxygen at rest, which kept my oxygen level around 94-96%. Anything below 90% is not good. Yesterday I used tanks to put myself on the highest oxygen level I could get at 15 liters, and I was still suffocating. After a few emails back and forth with my doctor, I was off to the ER.

Once we arrived I got to see what happens when you come to the ER with a REAL emergency. My oxygen on 15 liters was below 90%, so they immediately whisked me back to the ER's Resuscitation and Critical Care Unit, which was quite the intense experience! There were around 10 doctors and nurses waiting as they wheeled me into my bay, and I suddenly had a bunch of people bustling around and hooking me up to various things all at the same time. One of which was high flow oxygen, which helped IMMENSELY. Within half an hour I felt more awake and functional than I have since leaving the hospital. It was SUCH a relief!!

Unfortunately, high flow oxygen can't be done at home, which means I will now be inpatient until transplant. It also isn't exactly comfortable, though it's definitely more comfortable than constantly feeling like I'm suffocating. On the plus side, being on high flow bumps me way up the list, so hopefully I won't have to wait too long.

So here I am, back at HUP, my home away from home. This time I even get a special room with fancy monitors near the nurse's station so they can keep a close eye on me. Because we all know I like to bring the drama!