Today is a fitting day to continue my transplant story. It's the anniversary of my father's birthday. He passed away in 2007, at the age of 84. My dad's chosen career path led him to become a pathologist, a medical doctor who studies diseases. His specialty was cancer research. He was a brilliant man and a pioneer in his field who helped further advances in the understanding and treatment of this devastating disease. Ironically, when he was in his early 30's, Dad developed a life threatening form of cancer. He was treated at Johns Hopkins Hospital (JHH), where I was to receive my transplant. I was his 5th and last child, born after his cancer was eradicated. I never wavered from choosing Johns Hopkins as the hospital where I would have my procedure. Medical practitioners are not miracle workers, but I firmly believed in the competency and excellence of the Johns Hopkins team. It was also inspiring to me to know we had this very hospital to thank for saving my father's life a few decades ago. Thanks to the heroic medical efforts of Johns Hopkins, twice, I am alive and sitting here today sharing my experiences!
So...a few days before the scheduled surgery, my daughter and her boyfriend Steve arrived from their home in MA. It was fortunate they had a clear day for flying. The entire eastern portion of the country was experiencing extreme winter weather conditions and heavy snowfall in February 2010. The day before the transplant was to take place, we were hit with a massive snow storm. Kevin and Steve worked tirelessly to clear our steep, windy drive so we would be able to begin our trip to the hospital the following day. That night, we spent a quiet evening together simply enjoying each others company. It was hard to sleep, but we all did.
Early in the morning the next day, I received a call from a nurse at JHH making sure we could make it out to the hospital. I was told the medical staff was ready to go there and awaiting our arrival. In addition to receiving my confirmation that we would make every effort to be there on time for pre-op procedures, the nurse I was speaking with told me that having a transplant would be like transforming into a butterfly. It was a beautiful image to leave me with, but one I wouldn't quite grasp the meaning of until much later. The four of us packed our bags and were off, traveling along the snowy roads on route to Baltimore. Especially once we got to the city, we could barely squeeze through since the drifts were so high and the side roads in many areas were only partially cleared. It made for quite a nail biting journey, but Kevin got us there safely and we actually arrived prior to the appointed time. Our first hurdle was cleared. Although nervous in anticipation of what was to come, we were ready for the next step.
Almost right after we arrived, my daughter Desirae and I were called back to prepare for surgery. We were put in a curtained room on hospital beds that were side by side, a comfort for both of us to be right next to each other. Since Desirae would be taken to surgery first for the kidney she was donating to be removed laproscopically, her surgeon and anaesthesiologist came to her bedside to speak with her about what to expect first. Both were young men and I was so pleased with the ways they gently prepared her for her part of the transplant process. Both of them were also very humorous which helped put her at ease. I felt reassured that my daughter was in good hands. After they finished, a technician came in and both Desirae and I were fit with ports for IVs. The technician was a very funny woman who drew cartoons on the medical tape holding our ports in place. She drew a picture of Stewie from the cartoon Family Guy on my tape...which I saved afterwards and keep in a memory book :) Kevin and Steve were invited back to be with us and it wasn't long before it was time for Desirae's role to begin. With a kiss and a prayer, Desirae was wheeled back to surgery. My medical team arrived shortly after, although I didn't see my surgeon until right before the transplant procedure. My wait to go back was long. It gave Kevin and I the chance to be together, which did much to help calm my nerves.
Finally, the time came. Kevin gave me a kiss and I was whisked off to surgery. I did not expect the amount of people that was there in the operating room. JHH is a teaching hospital. In addition to the surgical team, there was also a group of medical students who were going to observe the transplant. I felt like I had an entire cheering squad with me as I went into surgery! My surgeon warmly greeted me and beyond that I have no memory of anything until I awakened in ICU about 5 hours later with a nurse by my side. Kevin came in very shortly afterwards. My first concern was for Desirae. Kevin assured me she was doing fine. The surgical site pain was pretty bad, but at that stage, I was provided a morphine pump and instructed to use it whenever I felt the need. I don't know how long I was actually in the ICU or what time of day it was when I was moved to the hospital room that would be "home" for the next week.
The most grueling part of my hospital experience came during the days following surgery. Very high levels of anti rejection drugs are intravenously "pumped" into your system day and night. At these high levels the drugs create a diabetic condition and regular injections of insulin are required. It wasn't long before my upper arms were black and blue from these injections. Blood draws are done several times throughout the course of each day and night, to continually monitor kidney function. Not only are you hooked up to IVs in both the arm and neck, but also a catheter and a sac attached to your abdomen helps draw fluids away from your surgical site. The sac needs to be drained by medical technicians throughout the day. It's there to help reduce the chance of infection. I don't think I have ever been more physically uncomfortable in my entire life! It was overwhelming at times. Post surgery, you also begin an oral drug regimen. Most of the multitude of drugs taken will need to be continued for life, and the side effects of some can be incredibly unpleasant. The morphine pump from the ICU was replaced by a codeine pain medication. I couldn't tolerate this drug, so, shortly after my surgery, I was relying solely on extra strength tylenol to deal with what was initially intense pain.
Beyond Kevin's ever diligent love and attention, the saving grace for me was the snow. The blizzard of 2010 continued for the first couple of days I was in my hospital room. I had a big window by my bed and a lovely view of the JHH cupola and twinkling city lights. Despite the pain and discomfort, the sight of the continual, softly falling snow outside my window had such a calming effect. My nurses and medical technicians were phenomenal. They were my angels ... so comforting, so helpful, and so encouraging. Within a couple days, Desirae was already strong enough to come and visit me and could walk from her room to mine. Seeing her doing so well and knowing that she had given me the gift of continued life by donating one of her own kidneys brought indescribable feelings of gratitude and joy. Talk about being proud of your kid :)
Early each morning, doctors, accompanied by their interns made rounds. Each and every time I was greeted by the same group of smiling faces. The student interns remained quiet while the doctor checked in with me. After this check in, the group would stand outside my hospital room conferring about my condition. I could hear every word and it almost felt like I was eaves dropping. Their daily morning visits actually were exciting because I learned something new or was affirmed of something each time.
Aside from hospital personnel who came and went from my room, my nights were spent alone. Kevin had rented a room in a house within walking distance from the hospital so he could get a good night's sleep before spending most of the daytime hours at my bedside. Spouses are allowed to stay overnight, but I'm so pleased Kevin afforded himself the comfort of a comfortable bed and some time for himself. I missed him when he was away, but I also needed some time to adjust to my new condition. Sleep did not come easily and I got very little of it during my hospital stay. My best friend so thoughtfully sent a care package to me which included a favorite book from our childhood called My Side of the Mountain, which I read cover to cover during the nighttime hours. It was a great choice to give me, as it detailed the adventures of a young boy alone in the wilderness, enjoying his exploits and adventures and meeting all sorts of challenges. I was also in new, unexplored territory in my life and had to find ways to adjust and continue on with my own personal survival story.
Also during the quiet stillness of night, I had what I can only describe as incredible spiritual experiences. One evening in particular, the world outside my window seemed to be totally aglow in the most brilliant, sparkling lights. A sense of awe filled my entire being and I felt connected to something inexpressibly bigger than myself. It was simply beautiful and I felt so grateful to be alive. For about two weeks post transplant, I heard the most angelic, ethereal music, emmanating from everywhere and nowhere at the same time. This sweet, comforting music would fade in and out of my consciousness throughout the day and night. At times, I also literally could feel my new kidney working within my body. It felt like it was purring. I asked the doctor about that when I saw him in rounds, and he said that what I described was entirely possible. Desirae's kidney had my system back in shape from the very first day...truly, utterly amazing!
The days of the week spent in the hospital went by incredibly slowly, but they also seemed to be over in no time. After the catheter was removed, I was able to start getting up and slowly start walking the hallways, toting my iv pole along with me as I went. Being mobile again was initially very uncomfortable, but also very necessary to regain strength as soon as possible. The day of my discharge was one of mixed emotion. I definitely wanted to go home, but I was also a bit worried about being able to do all I needed to do on my own away from the ever helpful, knowledgeable staff of the hospital. I felt like I imagine a baby bird feels who's finally gained enough strength in her wings to fly the nest but isn't quite sure she can do it yet ... but ... that day had come to spread my wings and fly. Along with an arsenal of medications, instructions for aftercare, and a schedule of follow-up appointments, and, after saying my heartfelt thank-yous and goodbyes to my hospital caretakers, I was loaded into a wheelchair and taken for a long spin through the hospital corridors to the front door where Kevin, Desirae, and Steve awaited my arrival. This ride down the hallways felt like a victory lap. The wind through my hair and against my face as I was pushed down the halls felt amazing. I couldn't help but smile out of sheer and utter happiness and triumph. Everyone we passed along the way smiled back. Ahead of me lay trials yet to be tested and endured, but, today, along with my courageous, most generous daughter and her boyfriend and my hero of a husband, plus a new lease on life, I was going home.
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