A little more than two years ago, I never gave becoming an organ donor a second thought.
Like many people, I never really looked into it and would joke, “who’d want my organs?”
In the fall of 2012, my colleagues noticed that I wasn’t looking as well as normal and asked it I was OK. I shrugged it off thinking, that yes I was tired, but it was getting to the end of the year and I had a week off later in December.
After my girlfriend Kim and I went to California to attend my service fraternity’s convention, I came down with some sort of bug as I started coughing a lot, I was starting to bloat, and was feeling worse. I spent that January going to the doctor who couldn’t figure out what the problem was after taking an X-ray as well as giving me a round of anti-biotics and other medications. He sent me to a pulmonary specialist who didn’t find anything. The next stop was in early March when I was sent to the local hematologist.
After the hematologist examined me, she scheduled a CT scan at Atrium Medical Center. After the scan, I had a follow up exam the next day and learned what the problem was. She recommended a gastroenterologist, Dr. Kuldip Sharma and made an appointment for me to see him a few days later.
Sharma, who had already reviewed my medical history and reviewed the scan results, entered the exam room, looked over my bloated abdomen. He then told me his preliminary diagnosis was that I had End Stage or Stage 4 liver disease, and that I would need a transplant in six to 12 months. However, he needed to do more tests before he could confirm it for sure.
I was stunned to say the least. It was like getting smacked upside the head with a 2 by 4 or a ton of bricks. What do you think or can you say after hearing that? And there were no warnings or indications in my previous lab-work over the years that there were any problems with my liver.
After the transplant, the doctors examined my old liver and found that I had a genetic condition that caused my liver to fail.
Kim had accompanied me to the appointment and was in the waiting room. As we went to the car, I told her what the doctor said and what was in my future. We’d only been dating for more than a year, and I wasn’t sure if she’d want to go along with me on this journey. I was relieved when she said she wasn’t going anywhere and was coming along.
After an endoscopy, a liver biopsy and a paracentisis (to drain 7-plus liters of liquid my failing liver couldn’t process), Sharma called me on Good Friday, March 31 and confirmed his diagnosis. He then asked where he could refer me to for a transplant. I took a few months off work on medical leave to get through the next stages.
While I originally thought I would go to the Cleveland Clinic for treatment, Kim and I spent the next few weeks researching the various liver transplant programs in the region. After talking to a fraternity brother who works with kidney transplant patients in another part of the state, and after doing the research, we settled on the University of Cincinnati Medical Center’s transplant program.
In between the final diagnosis and my first appointment at UC, I ended up in the hospital for a few days to deal some more issues. And it would be a recurring event over the next few years. Just before my UC appointment and at the urging of Kim and my mother, I shared the information with my siblings, including one in Afghanistan. My mom came up from Florida and moved in for the duration. Kim’s mom was also around to help keep an eye on me.
About six weeks later, Kim and I met with Dr. Nadeem Anwar, the medical director of the UC liver transplant center. Anwar went over my records, information and gave an overview of what comes next. He also spent as much time as we needed to fully understand what was going on with me. It also helped that Kim was there to re-explain what he was saying.
However, the next few months, the process was not as easy as sending in my name to be listed. It took about two months of various tests, blood and lab work, a psycho-social evaluation, a financial go-over, a stress test, several scans, ultrasounds, etc., as they got to know me inside and out.
In July, the UC committee that reviewed my candidacy for an organ transplant met and gave me their approval, which was then forwarded to the state for placement on the national waiting list. I kept the details of my illness to just a few people who needed to know and told my co-workers that I had a serious illness. After I was placed on the list, I shared the information with my co-workers and a few others.
It was also recommended that I did not travel more than two to three hours from the Cincinnati area just in case that important call for the transplant came. It did allow me to go to a few Reds baseball and Ohio State football games. And I was placed on a low sodium diet that did not include Skyline Chili and most other fast-foods. During that time, I was looking up menus and other nutrition information to determine what I could and could not eat. Kim and I also took care of the legal things, such as preparing a will, a living will and other documents, just in case things did not work out.
While I was sick enough to be placed on the list, my MELD (Model for End-stage Liver Disease) score was not high enough for a transplant just yet. The scoring system assesses the severity of chronic liver disease and helps to prioritize the receipt of a liver transplant. The process is fair as those who have a higher score and who are healthy enough to undergo surgery get priority for a transplant. However, I never knew exactly where I was on the waiting list as the MELD score is only one of a number of factors considered before that call is made.
And each month, I had to have lab-work to to remain certified on that list along with periodic paracentises to drain me. The most liquid that was drained from my body was more than 14 liters, or about the equivalent of 30 pounds. Each time I went in, I would play “high/low” on how much would be drained with the hospital staff.
I went back to work in August 2013 and my company graciously gave me a modified assignment and schedule. My colleagues and my company were very supportive of me throughout my illness. Being able to work was important as it was emphasized the importance of maintaining a normal home/work routine. In the end, it turned out that enabled me to be healthy enough for the transplant as well as a fairly quick recovery.
It also kept me from dwelling too much on a number of other things. In fact, I curbed my reporter’s curiosity and kept myself from Googling or searching for information on my disease on the Internet. There is so much information out there. If I had questions, I’d contact the UC transplant clinic for information or have Kim make those calls.
Until I received the call for the transplant, I was sick at times, didn’t have much of an appetite, was tired, and also did not sleep much. I also had a few meltdowns at home and at work due to the stress and anxiety I was feeling during the wait. Each month the MELD score also increased a little bit.
In late April 2014 and before my transplant, I signed up to be an organ donor when I renewed my driver’s license. I didn’t think it was right to be waiting for a transplant and not be willing to do the same for someone else. If you think your driver’s license photo is bad, trust me, mine looks 10 times worse.
As the weeks wore on, I was getting pretty frustrated and close to the end of my rope because I was so sick. That changed about 5:30 p.m. on June 15, Father’s Day afternoon, when my cell phone rang. It was the transplant center asking if I could be at UC Medical Center in two hours. I asked, “Do you have something for me?” The caller said maybe. I said I’d be there in an hour.
When I told Kim, she was so excited, asking if my bag was ready and wanted me to get in the car immediately. I told her I wanted to take a shower first and we’d go. I also reminded her that we were told that we might have one or two false alarms before it actually happened. As I called my boss to let him know what was up, she was trying to get me into the car.
We arrived at the hospital about 6:30 p.m. and I was sent to a room on the sixth floor. There I showered again, put on a gown, got retested, and sat in bed until the next steps were determined. Sometime after 3 a.m. June 16, Dr. Madison C. Cuffy, the surgeon of record, came in and said it was a “go.”
I knew who Cuffy was but had never met him before, so I asked him a couple questions about his education and training. As it turned out, most of his training was from Ivy League universities. I then asked his thoughts about the recently concluded NBA finals. Kim was not amused with this as she wanted me to stop talking so they could wheel me down to the pre-op area. She came down to the pre-op area before they wheeled me into the operating room about 4 a.m.
According to Dr. Shimul A. Shah, director of liver transplantation and hepatobiliary surgery, the transplant operation began at 5:25 a.m. and was completed about six hours later around noon.
Shah said on average it takes about 15 hours and three teams of doctors and others, to harvest and prepare the organ, to take the diseased liver out, and insert the donated organ into the recipient and attach everything back together. He said on average a recipient takes about eight days to recover post-transplant. I was released after five days. However, depending on the person and other circumstances that recovery period in the hospital can be much longer.
In 2014, the UC transplant center, which averages about 35 liver transplants a year, did 73 and is on track to have just as many in 2015, Shah said. In addition, the center also did about 85 kidney and 10 to 12 pancreas transplants last year. And it will become a busier place. Shah said they will be starting heart and bone marrow transplants in the coming years.
The care I received at UC Medical Center has been nothing short of extraordinary, same as the support I got from everyone throughout this transplant journey.
Once I was released, my dietary restriction was lifted and I was able to have some Skyline again among other things. I also had a few weeks of physical therapy, occupational therapy, home nurse visits. I also started going back for follow up clinics — first weekly, then weening off to biweekly, then bi-monthly, monthly and now every two to three months. And so far, other than gaining some weight, I have been doing well and have not experienced any rejection issues.
I returned to work after Labor Day, and have been kept busy on my beat which includes Middletown, Monroe, Franklin, Carlisle, and Franklin Twp. A lot of people who saw me before the transplant and after are amazed at how much better I am looking since the transplant.
This journey in my life has left me with a number of new perspectives about myself, my life, my family, the people I work with, and the people I come into contact with each day. I’ve learned to be a little more optimistic, a little less of the workaholic that I used to be and to better prioritize what is important in my life.
Recently, I sent a letter through LifeCenter, the regional organ procurement organization, that works with hospitals in the region. In that letter I expressed my deepest and humble thanks to the donor’s family and that I am keeping him in my thoughts and prayers.
One thing for sure, is that there hasn’t been a day that I haven’t thought about the person who gave me this wonderful gift. All I know is that the donor was a male about my age. I hope someday I will get a chance to meet his family and learn more about him and the kind of person he was.
His selfless and final act of love and generosity was the greatest gift that I will ever receive in my lifetime. He’ll always be my unsung hero.
Thank you for reading the Journal-News and for supporting local journalism. Subscribers: log in for access to your daily ePaper and premium newsletters.
Thank you for supporting in-depth local journalism with your subscription to the Journal-News. Get more news when you want it with email newsletters just for subscribers. Sign up here.