El–Chupacabras Kidney

By Guy M.Grace Jr.

I write about my experience with kidney donation with great pride. Hopefully my experience may inspire others to follow their hearts when faced with the challenge of organ donation.

In November of 2003 I was chatting on Yahoo messenger when I came across the profile of a woman who I had chatted with several years prior. It had been several years since I had chatted, so really not knowing to many people I instant messaged Amanda with using my El-Chupacabra profile that I created as a sort of personal joke to chat with. Obviously Amanda age 35 at the time at first was a bit startled by an IM from someone with such a profile, but identified myself and she started chatting after she remembered me from several years ago. For a few days we chatted on occasion and on the day before Thanksgiving we spoke on the telephone. Amanda then told me what had developed over the last 4 years of her life since we last chatted. Amanda had been married and divorced during the 4-year period. In addition she had a 4-year-old son as a result of the marriage. Amanda informed that due to complications during the pregnancy that she had lost the function of her kidneys and had been on dialysis for the last 3 years.

At the time I had no clue as to what kidney failure was and or what dialysis was. To me Amanda’s story sounded very sad. I knew her condition was very life threatening, but hearing about the reason why she had the condition sounded so tragic. To almost lose your life to bring life into the world was a story I wanted to hear more about. I invited Amanda out for lunch. Upon meeting Amanda I did not know what to expect. Upon meeting her for the 1st time in person I would say that she is a very beautiful woman. However I noticed that Amanda was physically scarred. This beautiful person managed to maintain a smile with the scars that were created from the process of dialysis over the 3 years. Amanda had skin grafts over both arms where the dialysis tubes were connected to her over the years. Her little veins did not hold up and eventually failed and had to be replaced with tubes and skin grafts. She had numerous scars on her chest from the process and a large white band-aid covering the most recent dialysis tube put into her body. To me the scars and the tube looked very painful and I could not imagine the pain that this woman must have been baring over the last 3 years. I asked Amanda about the challenges she faced with her condition and she told me that she endures the pain for the love of her son and nothing more.

Over the month of December I kept in touch with Amanda and continued to develop a friendship. On Christmas Eve I was invited to her place and spend a few hours with her, her friends and her son. On that evening I witnessed an interaction between mother and child that was truly special. I was amazed that someone facing such a personal dilemma was able to give so much love. Upon returning to my home later in evening on that Christmas Eve I admit that was the 1st time that I had thoughts about looking into what organ donation entailed. At this time had no clue that live donors could be none family members, but as I went to sleep prayed that Amanda would get her gift of life very soon.

In January 2004 one day I called Amanda and upon talking with her I could sense some sadness in her voice. I prodded and was informed that she has been told that her doctor had contacted her and told her that she had now developed serious heart problems that were compounded by the dialysis. She was terribly distraught; since she was so worried now that she never live day that she would get a transplant. I became sad myself and I started doing my own research into the situation. First of all I found that I did not have to be a family member to potentially be an organ donor. I then decided to contact the transplant center at Presbyterian/St. Luke’s Medical Center, which would handle any potential donation.

The 1st test was the blood test to see if I had a compatible blood type. Come to find out my -0 blood type was compatible with Amanda’s blood type which was a good start. After being told I could be donor I informed Amanda what I was looking into doing. She was absolutely excited, and this made me feel pretty good.

The next test was to meet the transplant center psychologist to see if I was psychologically able to donate a kidney. I told the psychologist my story and why I wanted to help my friend. My main reason was that I felt that Amanda is a good mother and a child should have his mother. After completing the interview I was told a few days later that I would be allowed to continue the process.

The next test was the physical by my primary care doctor. I took the physical and was told I was healthy. However one of the issues upon turning in my paperwork to the Transplant center was about my weight at the time. Since I have been an avid weight lifter since my early teens I have a very large muscular build. I was informed by the transplant center that a doctor who never met or seen me before thought that I may be too heavy and disqualified me for the operation. I protested and asked the Transplant center to have the doctor meet me in person and decide that. You see I was disappointed that someone was disqualifying me based on numbers on paper. At the time I worked out every day and I was even bench-pressing over 400 pounds (by the way I still do!) . My body showed that and even the doctor on the physical stated that my appearance was very muscular. Upon meeting the doctor he took one look at me and cleared me for the next round of testing.

The next round was the two 24-hour urine collections. Now I had to do this twice because I thru off my numbers a bit because I drank excessive amounts of water thinking that it would help me pass my test. Boy was I wrong and the best thing was just to drink what I normally do during the day. So I drank my normal water amounts, my traditional Starbucks Caramel Frapachino and several diet Pepsis. I passed the test. But I admit it was a bit awkward to have my urine in my refrigerator.

If there is anything that I will remember about the process is the serologies (blood testing). There were quite a few, and it almost seemed like everyday that when you arrived at the Transplant Center the lab was your 1st stop. However for those who are squeamish just remember what the person whom you are donating too goes thru every day.

The Renal ultrasound and Chest x-ray went very well. The Renal ultrasound was a bit uncomfortable do to the process of running the sensor over my midsections skin. I believe that just had to do with the process and it did not hurt at all.

The electrocardiogram was very interesting, and it was really nice to find out that my running had been doing me pretty good with a resting heart rate of 46 beats per minute. At the very least at by this stage of the process I was finding out how lucky I was to be so healthy.

Soon after I was informed that I had to take a renal scan. This was done, as back up to make sure that my body was able to handle the operation and carry on afterward. I was given an IV and as the radioisotopes were injected into me I took one look at the IV and fainted. The technician was awesome and made sure that I was able to lie down as I gained my bearings. I think this was the worst test of them all because I felt pretty ill during the process, which took 8 hours. However I was told that most people don’t have to do this test. If you do just hang in there and think about the recipient.

The next test was the “Cat Scan” Computed Tomography. Of the entire test this one fascinated me the most. Being a science buff this to me is cutting edge technology. I admit as I went into the tube I was a bit scared because you really can’t move, and in my case it was sort of cold inside. This took about 40 minutes of my time. I really wanted to see my images afterwards, but I was told it was on a computer somewhere in cyberspace.

Now the moment soon arrived where I would find out if I after all the testing I was eligible to donate. I met with the nephrologist who was to handle my surgery. Upon meeting him he seemed to be bright young man. He went thru all the process with me and his attitude and professionalism solidified my decision even more. During this appointment the doctor then scheduled the surgery about 2 weeks later for March 3rd 2004.

Those 2 weeks seemed to go by pretty quick. One of the things that I did was to make sure that I kept exercising thru the whole process. I kept this process up until the night before the operation. It was my hope that constantly being active would insure a quick recovery time. I also made it a point to take a vacation day before the operation. For me I booked 3 weeks of vacation time for the operation. I used vacation time to make sure would not use sick leave, and besides I prided myself on not calling in sick for 15 years of my career, so as matter of pride I wanted to maintain the streak. One of the things that I did was to tour a dialysis center during this period. I recommend that every potential donor do this. It gives you insight to what to your recipient goes thru 3 times a week. What I saw strengthened my resolve to help. The other thing that I done was go online and read the many inspiring stories on the net about other people experiences. I resolved that I would write about my experience afterwards after doing this too. Those people I read about seemed to have come out of it ok. Another item to do is to talk with your friends and family thru the entire process. I asked my dad to accompany me to the hospital and communicated with my mother and sister who live out of state. The fact is family support is important. I also stayed focused on my job and maintaining my hobbies. Don’t dwell too much on your mission at hand. Being a former solider and having very demanding career has taught me to stay focused but always be able to play a bit when difficult tasks arise. The night before the operation relax and go to sleep as early as possible.

Operation day, wow you cant believe its here. My father picked me up and brought me to hospital. I had to get into a gown and I was bit shy about could potentially hang out. So be prepared to cover your self. My dad was awesome, and of all the words anyone said to me ever in my life was when he said that he was proud of me for what I was about to do. Believe me I have received many awards thru my life in regards to career but his words were very special. Soon afterwards an IV was hooked up to me and out I went I smiled but was scared as I went over and was peddled down the floor for the laparoscopic operation. As this took place I was saw Amanda in a gurney herself and gave her the thumbs up and reassuring smile.

I don’t remember anything but when I woke up, I felt like it was hard to breath. My 1st words were about Amanda. I was told my operation was bit longer than usual because my kidney was a 13 centimeters long (xxl). However Amanda’s operation from what I was told was finishing up. I was put in recovery and given a room. Details for me are a blur, and I had little pain and all I wanted to do was sleep. The next day was also a blur to and went by real slow. I slept all the time, but in the evening a nurse coaxed me out of the bed to at least stand. Let me tell you that were a very painful moment. But try to stand. By the next morning I got out of bed and walk a bit and by the night was doing a few laps around the halls, very small baby steps. I mainly visited Amanda when I got a chance. She was much worse off than me. But you know the best thing was seeing that she was actually feeling up a urine bag. That was exciting because this meant things were working.

4 days after the operation was released from hospital. The 1st week was painful, but I made it a point to walk as much as possible for the next 3 weeks. Staying fit prior was very helpful in my thoughts to my recovery. This allowed me to pretty much feel back to normal at the end of my 3 weeks vacation. At 4 weeks I started the elliptical trainer again and within 6 weeks I started light weight lifting again. After 3 months I was totally back to normal. Enjoying all the activities that I always did. I do have a small scar on my belly button and my ab muscles feel a bit knotted but I am fine.

After all of this the best thing that I feel now is that I feel great that I helped Amanda. Amanda is literally my lil sister these days and she calls me her big brother. Amanda and “Chupacabra” are doing quite well these days. Amanda’s kidney function is now excellent and the heart problems are controlled as a result. I am so proud to know that my friend is doing so well. One special moment for me was this last July on a Wednesday evening, Amanda left me a voice mail and thanked me for giving her the time to play with her son on that Warm evening, she was grateful to me for the moment she was now having with her son. When I have a bad day I plan to listen to that message to remind me of just what a good felling is supposed to feel like. I feel so good for her, and feel good about myself.