Well, we wound up going back to the doctor for a checkup on Monday of this week. On Tuesday they let me know that yes, in fact, I still had some infection in my lungs. They prescribed a very powerful antibiotic that would cost us $3000 if we didn’t have good insurance!! It had better be good medicine you say….. so do I!!! Only cost us a paltry $12.
So I started that medication along with an increased dosage of prednisone (the evil medicine) to get the infection cleared up. Needless to say they will not list me until it is.
The other thing that has to happen is that I have to get back to baseline in my physical rehab. I went back to the fitness center on Wednesday and Thursday. Did not do so hot on Wednesday but did better on Thursday. Had to go to the clinic Friday, and was having a very bad breathing day, so skipped exercise again.
Have to go back to the clinic to get some blood work done and get my feeding tube extended (due to weight gain) on Monday. Not sure how much rehab I will be able to do after that, but hopefully will do some. Then on Tuesday we will get back to a daily routine.
After these two things are cleared up I should be listed. I know, I know, I keep saying this and it doesn’t happen….. but you have to keep the faith that it will and that Duke is doing what is best for me. They will not do a transplant with obstacles like I have right now and after the initial disappointment I realized this.
So Charley, Cheyenne, Sadie and I will continue to live here in Chapel Hill as long as it takes me to get new lungs and get healed up so that I can go home!!
Everyone have a great weekend!!