I am still waiting on the list. 🙂 I feel as if I have been on it for years, but it has only been a week. I feel so incredibly horrible, and I have been wondering if it was all in my head. Since I have gotten off of the trial drug I was on, I just keep feeling all of the time as if I am not getting enough oxygen. And like every little thing I am doing is SO incredibly difficult.
Well, Monday, I did go to an appointment in Iowa City. My lung capacity went from 26% the last time, to 18-19% now. THERE is why I am feeling so awful. I am declining. We expected that I would, but I am just really feeling the decline right now. The other HUGE significant thing that I experienced was a 6 minute walk test. All it is is just that…walking…for 6 minutes. A year ago, I did the 6 minute walk test with 8 liters of oxygen (which is a lot) and did okay. This time, I did the 6 minute walk test and had to turn up the oxygen to the highest of 15 liters, and I STILL didn’t stay saturated! Three times during the walk, I had to stop and rest. I was seeing white spots and felt like my body was going to burst into flames. Not to mention the fact that regardless of the fact that the hospital staff knows I am sick, it is still a hard thing for me to be 28 and in such horrible condition. Especially since I LOOK so normal. Take my tubes off and I am a normal 28 year old woman. It is hard sometimes.
Anyhow, that was very scary to hear how much I have declined, and so quickly. I really need these lungs quickly. Please keep praying for me! I know God is always on time, but in times like this, it is really difficult to be patient. I just want to live again!!!
Much love to everyone. Just wanted to update. xo