After much deliberation with pulmonology, gastroenterology, and rheumatlogy, we have decided to have my G/J feeding tube removed today. I have been horribly uncomfortable - intermittently unable to eat and never able to sleep - since the tube was placed in February. It is a ballsy move because all I have been able to consume by mouth for the last few days is some orange juice and raisins. I weighed in yesterday at 80.2 lbs fully clothed. Our hope is that I will feel better and more able to eat without the tube and that we can decide whether to try other options (being fed intravenously or having a J tube placed) in a week or so.
Bill leaves for Asia tomorrow. I cannot bear to see him go, but he cannot get out of the trip now. His sister arrives Sunday and will be with me for a week.
I am the most frightened that I have ever been in my life. Please keep me and my family in your thoughts and prayers.
At the end of my pulmonologist appointment yesterday, the doctor did not ask me to schedule a follow-up visit. That is never a good sign. If they don't ask you to return in 3 to 6 months, it is usually because they don't expect you to be around.
Over the next few days I plan to move a lot of my older writing to this site so that they are there. So there will be multiple posts once I feel up to it. Pace yourselves!