Transplant Evaluation Day and Taking a Turn for the Worst

 Transplant Evaluation Day and Taking a Turn for the Worst

     

    Finally, the day I had been waiting for. I was going to meet with the transplant team. The whole ride there I was so uncomfortable, sitting upright, in the backseat of my mom’s van. I didn’t even have the core strength to sit. My whole body felt sore. I had my oxygen tank with me and later used a wheelchair to navigate the buildings, yet I still had found the strength to shower, do my hair, and put on my make-up. Looking back, I’m not sure how I managed to all of that. The transplant pulmonologist, taking a look at how well I presented, said I might not be placed on the active transplant list. I was devastated at the thought of this. I immediately burst into tears and said, “Please, I don’t want to die.” The doctor comforted me the best he could. When he asked me to get up and step on the scale, my oxygen plummeted and he said perhaps the tests would show a need to put on the list, afterall. As we got to talking, he asked where I had been for the past year. He was shocked that I hadn’t been to see the team sooner. Usually, a person is monitored by the transplant team for some time before their transplant to educate them on the process and keep tabs on their health. This was never mentioned or recommended to me. It was only because I had asked about transplant, that my CF doctor even entertained the idea. He then explained the process to me and told me the first step was two days of intensive testing at the transplant center. I was so overwhelmed. I barely made it through this one day of meeting the team, I didn't see how I could possibly make it through two days of testing. I was so uncomfortable sitting in the wheelchair. I didn’t know how I would make it through two more days of testing. The testing would be scheduled for one to two weeks later.

    I never made it to the testing. Again, my health would take a turn for the worst. I was not only using my 10 liters of oxygen but I was now pairing it with a second cannula turned up to 6 liters, the max setting on the tank. Even with this additional oxygen, I was suffocating. I wasn’t even able to do CPT anymore. I just laid in bed all day. I managed to fill an entire styrofoam cup with mucus by the end of the day just from coughing while in bed. I was quickly drowning in my own mucus. So many times, I wanted to cry and just let it all out, but I was afraid if I did; I wouldn’t be able to get enough air to sustain myself.  I was already struggling to get enough oxygen to stay alive as it was. At night, I had been sleeping with a pulse ox on my finger so that if my oxygen got too low while I was sleeping, an alarm could wake me. I couldn’t lie flat for some time now, and instead, I would put two pillows on my lap and would rest my head on them. Similar to the second position of CPT. My mother would sleep with me at night, in my bed. I wanted to have someone with me, in case I were to pass away in the middle of the night. I didn’t want to die alone.