I think this has been the longest night thus far during our adventure. It is most definitely the scariest for both of us. Even the night before the transplant was not as bad as this is.
All night I feel like we have been dealing with the unknown. A balancing act you might say to get everything back on track internally.
The sad part is it is not the unknown. That is the sad and very frustrating part to both of us is that we knew something was wrong a week ago when we reviewed blood-draws.
We knew a week ago when we received Shannon’s blood work that his meds needed adjusted. As we watched his GFR decrease from 60+ to a 19. As we watched his potassium sky rocket and we worried about heart issues. As we watched his creatinine climb. We knew a week ago that he probably did not need anymore Lasiks and could probably maintain a healthy level of potassium on his own.
We have been taught by an amazing nephrologist to keep track of diet to help impact Shannons numbers and change how he is feeling. Why was this known to us and not to the transplant coordinator each time we spoke to her last week? We could have prevented the unknown and not be sitting up all night in a hospital room begging for help and answers! The muscle cramps, the nausea, the pain….I feel all could have been prevented just by reviewing lab work.
Does Genesis take too long to process results? Did the transplant coordinator miss the signs? What went wrong besides us following directions?
A new patient and wife has been developed overnight. A new fighting patient that will demand changes when they are due. I know not all people keep track as close as we do, but keeping track has kept my husband alive.
Please keep praying. It has been a bumpy road and we are not in the clear yet. Pray for not just us, but for the staff working for us as well. Patience is thin and tension is high. We are hoping for some answers from Genesis and OSU as we move forward and look ahead.
Love and God Bless,