Welcome to your life, there's no turning back' - Everybody Wants to Rule the World - Tears for Fears
About a year ago I was in the ICU at UPenn hanging onto what little life I had left by a thread, not even a thread, that is too strong a word, more like a filament, a fiber if you will, a piece of used floss, which is about what I felt like.
I had been in the hospital since the beginning of January when my cousin Sandy came over to take me to my doctor appointment and in all my frustration and sickness I told her forget the appointment and to please call 911. She did and we waited. The ambulance came very quickly if I remember correctly, much of this time in my life I do not remember as my brain was not getting enough oxygen. It was probably better off that way, maybe it was not the lack of oxygen but perhaps a defense mechanism that kicks in when your body and mind needs a pause, a break or a more permanent vacation from the harsh reality that is life. Sometimes reality falls like concrete raindrops and you are standing there without an umbrella, this is what my entire life had become.
The ambulance brought us to Easton Hospital and from there they contacted my transplant team at Penn, they were working on a transfer but it was going to take a little bit of time. They furiously tried to start an IV on me, something that is very difficult, they ended up having no luck and started one in my neck. My cousin Sandy sat with me the whole time, held my hand and kept Tommy informed on what was going on. He had just recently started a new job and we told him to stay at work unless something serious happened. I was finally brought up to a room around midnight and was told the transfer to Penn would take place in the morning, fine by me, I slept like a baby, it was the one thing that I had left of my former life and one of the only things that truly took away all of the pain and anxiety.
Everything from this point is a blur so I am only going to recount the things that I remember. I literally could not breathe, my lung function at this point was around 15%, hard to believe that just 6 short months ago it was over 100%, my how life throws curve balls at you. I could do this, I had to do this, I was not and could not give up. I was still on the transplant list and was told that I would not be leaving without new lungs so basically I would either leave happy and healthy or in a body bag. They performed another bronchoscopy and this one really took it out of me mainly because my lung function was so low but it was something that had to be done, they could tell if the rejection had worsened and also test for any new active infections. Turns out that I still had the antibody mediated rejection (the treatments that I did in August and September as an outpatient did not help at all), which is a very kind of chronic rejection that they normally do not see in post lung transplant patients, this was very very serious and very very grim. I also had double pneumonia and the flu to boot, these had to be treated urgently and much to my chagrin my family and I were told that I had to be taken OFF of the transplant list. I could not receive new lungs with these infections and if the oral and IV antibiotics that they were going to put me on did not work it would be the end of the line - no transplant and hospice care as an inpatient until my final curtain dropped. I was so heartbroken, I could not believe this was happening, my literal worse nightmare was unfolding before my very eyes. I was exhausted and did not know at that point what I wanted to do, keep fighting and hoping or resign my fate.
'Is something wrong she said. Of course there is. You're still alive she said. Oh but do I deserve to be? Is that the question? And if so, if so, who answers? Who answers?' - Alive - Pearl Jam
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