“Before my last hospital stay I could only walk about 10-20 feet without gasping for air or throwing up from coughing. I was vomiting from coughing up to 4 times a day, eventually unable to keep food or water down, having tachycardia, and battling constant fevers. I lost 10 pounds in two months, and lost about 10% lung function. I started having more severe chronic pain, and felt like it was extremely hard to stay awake mentally or physically through the day, sometimes spending nights waking up and coughing for two hours straight while throwing up.

I was really miserable physically and my body was falling apart but oddly enough my attitude shifted and I found little things to cling to and look forward to instead of waiting until I’m “better” to be happy or enjoy life. My body did adjust and I started handling fevers a lot better, but I had a lot more physical limitations than normal. I remember trying to climb a flight of stairs so I could take a bath and stopping three times to sit down and catch my breath. I was only a few stairs from the top and started crying because I had to ask for help since I didn’t have the energy to make it. Once I was taking a bath I didn’t have the energy to wash my hair and my body. For a long time I just sat there, because I didn’t have the energy to get out, and I hadn’t even picked out my own clothes.
Fast forward to my admission I felt like my medical team and I were not on the same page at all with communication and I found out I was theoretically failing a transplant test I didn’t even know you could fail. We all had a meeting and they have decided to refer me to the transplant team. I also started Pulmonary Rehab, which I now do twice a week.

I did a month of ivs after my discharge and made the decision to discontinue the antibiotics like the doctors requested for fear of causing resistance. I felt sick off and on within a few days of discontinuing antibiotics, but it has been manageable. For once it feels like my body is actually trying to fight instead of just being beaten down. Pulmonary Rehab to my surprise has seemed to help a lot, as has going out of the house and asking for more help when I need it. I think before when I was exercising I was burning myself out and taking too long to recover, so it was never very beneficial. I have started back up on oral Minocycline, which has not made much of a difference and I am going back downhill. Despite the positive changes and a bit of stability, I am scheduled for transplant evaluation the week of July 22. Evaluation will determine whether I am eligible to be listed for transplant and it will tell them a lot more about how my entire body is doing in the grand scheme of things”.

-Written by Sara Wiley