“I got admitted on September 28th and started on IV Tobramycin and Zosyn. I actually coughed during treatments which was a little different and had bad headaches and some earaches especially with fevers. Viral panel negative, WBC low, CRP higher than my usual high. Pfts however were only down 3% to 36, they dropped another percent to 35 and the cf team freaked out and ordered an X-ray even though I think it’s just because I was sleeping.. also got an abdominal X-ray because I’ve had a lot of bloating with tube feeds this admission. Did an abdominal clean out with Golytely and repeat X-ray was fine. They also changed my Zosyn to Ceftazidime which is currently causing my face to be mildly itchy, so I’d imagine I’m developing an allergy similar to the Cefepime. Pft’s now at 38%.
I attempted manometry for the second time, this time with extra numbing medications that immediately caused me to gag. I gave it like 5 good tries and did the best I could but couldn’t tolerate it due to gagging, dry heaving, throwing up, and trying to swallow and calm down as they tried to continue to put the tube in.
Transplant wouldn’t get back to us on what to do about manometry so the team consulted GI. They’ve decided on making me NPO tonight to go under for an EGD tomorrow where they will also place the pH probe I need to have done. Transplant has decided to do the EGD instead of the manometry. I’ve also been working really hard on trying to walk more than I usually ever do and getting a little further each day.
Monday I am scheduled to have four teeth removed including two wisdom teeth as the final stage of dental clearance for transplant. They planned it to be outpatient and for me to be awake but they are going to see if they can fit me in to the OR Monday instead since I’ll probably still be admitted. I think I’ll probably still have to be awake for that but I’m not sure.
After all of that, barring complications or the need for a fundoplication.. I will officially be done with all of the transplant testing and then a week or two after they receive the dental clearance note from my dentist they will make a decision on if I can be listed or not”.
-Written by Sara