Health Update 4/16/19


They started me on antibiotics Thursday night in the ER. (Now called the ED. So you may hear me call it either one. I mean the emergency room or emergency department). It all started with a morning oxygen saturation of 75%. My oxygen was low wed night so I slept with my o2 monitor on and on my couch. Gram slept on the other couch with me in case anything happened. I got up with Jobe and woke him up. I couldn’t make him breakfast that morning, everything felt so difficult. So I asked gram if she would get him ready. Gram got up and I put my monitor on my finger and asked her to check it every once in awhile while I slept. Her and my grandfather did and before long my grandmother woke me to tell me how low my blood saturation level was now. It dipped down to 75% so I called my primary care doctor (PCP) and made an appointment for an hour later at 9:30am. I really didn’t feel that badly, as far as short of breath or whatever. My grandfather brought me in to the hospital because gram had her ladies aid luncheon that afternoon. He normally stays home with Jobe so I think hearing all the doctors talk was a little overwhelming for him. A lot of quick talk using terms he wasn’t used to. He did a good job.

Grampy went and got us lunch and we fed my doctor too! Haha - he said he hadn’t eaten all day and by that point it was nearly 3pm. We all had breadsticks. 😋😋

My doctors at the doctors office tried to get me an ambulance to Boston, knowing that’s where I needed to be. What a hassle. They finally figured it, I had to wait a couple of hours for the ambulance and right before the ambulance got there my transplant team called to see if I was in the ED. I told them I was waiting for an ambulance to bring me to Boston. Apparently the logistics of that makes it so they can only do ED to ED transfers. So I had to go to my local ED dept before Boston would accept me. So off to the local ED I went. Once I got there, I was told that mass wasn’t accepting any patients except massive heart attack or stroke victims.

I was told by my team that they almost never accepted patients already admitted into a different hospital so I didn’t want to get admitted there, but they admitted me anyway. No one was sure how long until MGH syarted accepting patients again. They were in constant talk with my lung transplant team, but when on 6 liters of oxygen I was sating at 86-89% and every time I fell asleep it would go down and start beeping at me. So I didn’t sleep much. Finally around 5pm I was told MGH was accepting patients and I was the next on their list so I only had to wait for an ambulance and it should be there in the next hour. They showed up basically on time and we started the long journey down to Mass. I mostly texted people catching them up and took naps. So the trip wasn’t too bad for me.

When we got here I was supposed to go to my favorite fancy floor, but they gave my bed away on the way down.. so I went to the transplant floor. Kind of dark and dreary. Not great for the mood and no refrigerator. Bummer.

So I was on the transplant unit for less than 12 hours when I got switched to ICU because they had me on the max of oxygen and couldn’t get my o2 up. They put me on high flow oxygen and started me on high doses of steroids in case of rejections. Within the first couple of doses I was breathing better and they turned down the high flow. And even got me off of it that evening back on regular oxygen.

After that I was able to do a CT scan so they could see a little better what was going on in my lungs. They said it looked more like inflammation than infection meaning possible rejection. I was already on the courses for rejection though with the high doses of steroids. They were optimistic things were turning around and I was optimistic that they were optimistic.

Last night they moved me out of the ICU and turned my oxygen way down. They had me down to two liters of oxygen and I was sating at 99-100% so my doctors turned it off to see how I did this morning and I’m sitting around 93% on room air! Which is great compared to before. They asked me if I threw up before coming in, I told them I had.. just the day before. He said I could have aspirated into my lungs because usually rejection doesn’t come on or go so quickly. I’m not sure how they figure out which i her or if they’re treated the same

I also did some walking laps and some leg exercises with PT (physical therapy) I dropped to 88% at my lowest i think. But that’s not terrible.

Anyway, enough for now. I’ll update more later. You guys are amazing for reading this dumb stuff I write. I love y’all so much! I couldn’t do this without your continued love and support.

✌️&💜