On March 10, 2006, it was a Friday, just three days before I would get my transplant call. I'm sure I had to go to 7W that day for something because I was so sick. I was living at the Family House with my mom where we had been since Dec. 2004. I had given up on ever getting a call by this point. The hardest part of transplant world is the wait...the never ending wait for that call. Knowing you always had to be near a phone or pager in case the call came in, the limitations on traveling so you could be close to the hospital, and then getting the dreaded call that doesn't end up working out in the end after hours of prep for surgery.
Kareem had asked me days earlier if I was starting to give up. I was. It was my turn for organs. It had been for a long time. So many who came after me and were far less ill had already received theirs and were returning to more normal lives and had been able to go "home home" from the hospital. I needed that call...and soon. The real one. I needed my organs or I wanted to just go home and finish out whatever days I had left.
The previous week my mom had left Pittsburgh and come home to take a break, at the advice if my doctors, so she would be strong and capable of caring for me post-tx. She left me in the care of my grandmother. I was so scared while she was gone and sobbed and sobbed up to her leaving because I was so scared that while she was gone, my grandmother would walk in my room one morning and find me dead. I knew there wasn't much time, but I never told my family this. I kept that bottled up inside.
Now, 5 years later I am living at home again and not sitting around waiting for the call. In fact, I am trying to avoid any calls that have anything to do with Pittsburgh! Some of my friends transplanted before me are doing well, and some I have lost. But I am plugging away and have been able to move on with my life outside of the hospital and away from Pittsburgh. My life no longer revolves around Pittsburgh and my health, but is more about my life and Pittsburgh and my health is part of my life. It is NOT my life any more. I can focus on the future more in terms of months and years, rather than days or hours. I no longer have to hook up to complicated and dangerous IV feedings, antibiotics, or deal with central line sterility. I have a feeding tube now, but I am much safer with it than IV lines and generally manage the feedings much better than I did pre-transplant. In spite of that, I am still able to eat and drink some to supplement them.
I have been able to resume my hobbies and start new ones. I get out of bed on my own and shower on my own, and the years of sponge bathing to protect my IV lines are a memory. My mom has been able to return to work and her more normal life too. She no longer has to care for me 24/7. I do not have to accept deliveries of TPN and supplies once a week, and my refrigerator has FOOD and DRINKS instead of bags of white fluid full of lipids, vitamins, and minerals intended to drip through a vein and not enter naturally- like through the mouth. What is in my refrigerator now is much tastier and less stinky too (unless I forget to clean it out regularly...and find baking soda boxes that expired in 2007...)...
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