My 5-Organ Transplant: How Devastating News Led to My Best Possible Outcome
I had been waiting almost a year. I didn’t have much time left to live. I was severely underweight, living three and a half hours away from home, and most of the previous five years had been spent in bed. I was 28 years old. I had seen one birthday, two Christmases, two New Years, and the birth of a nephew pass by while waiting. Every minute was spent hoping the next time the phone rang it would be that anticipated call my body and mind so desperately needed. Instead I was continuously disappointed with calls telling me to get to the hospital immediately to be treated for a problem that had developed.
My outings over the previous five years had consisted of trips to doctors’ appointments or the hospital. I wasn’t able to drive, and continued to develop more complications the longer I waited. All I wanted was a shot at a more “normal” life. I wanted to drive again, taste a real meal, no longer hook up to TPN (IV nutrition), IV fluids, or carry around two bags around the clock hooked up to two tubes draining bacteria and fluid from my stomach and what remained of my small bowel. I was tired of long days in clinic, I missed my guinea pig, and I wanted to go home to spend holidays with my family — to watch my nieces and nephews grow up, attend special family events, pursue my dream of receiving my graduate art therapy degree and get involved in volunteer work. I wanted not just to survive but to thrive – to live – to pursue my dreams. Each day that passed decreased my chances of survival drastically. No one had expected me to survive as long as I had.
In January 2006, I thought my chance had come. After 10 months on the waiting list for a five-organ transplant (small bowel, pancreas, liver, duodenum, and stomach) due to complications from gastroparesis and chronic intestinal pseudo-obstruction, I received my third call for organs. After over a year of testing, fighting to stay as strong as possible, developing new life-threatening complications I was not expected to survive, periods of time inactive on the list because I was too sick to go through the transplant, and with few veins left anywhere — neck, chest, arms, and even femoral to continue receiving IV therapy — my time had finally come. Hope. I knew it. My transplant doctors knew it. They had just received information that the perfect organ match had been found. I was told they had never seen organs that were such a perfect match for a patient before.
My mom immediately took me to the hospital to begin the pre-op process and wait for my doctors to fly out to look at the organs thoroughly and bring them back. It was one of the longest nights of my life. I went through a whole range of mixed emotions. Excitement that my time had finally come and I had lived long enough to reach it. There was sorrow over knowing a family had just tragically lost a loved one. There was a sense of guilt over the fact that while a family was mourning, I was happy because it meant I had a chance to live. I had a feeling of overwhelming thankfulness to a family I had never met for giving me, a complete stranger, a chance to live again. And then there was fear – overwhelming fear. Fear I wouldn’t make it through the operation. Fear that after all of this time, my body would reject the organs, fear of an unknown future, and fear of the pain I would wake up to and the very long road to recovery. All of these emotions were draining. Yet, I was ready to move forward and get through the toughest and scariest fight of my life at that point.
After eight hours of waiting, meeting with the nurses, anesthesiologist, informing family of the news, and completing the pre-op process, I was ready to go. I was given an approximate surgery time and taken to pre-op holding in the middle of the night to wait for my organs to arrive. They were finally with minutes of rolling me into the OR when the worst call of my life came. It was one of my doctors. I knew the news was bad when my bed was rolled close to the telephone so my doctor could talk to me. It was so bad he did not even want the nurse to tell me.
Throughout the evaluation process, my physicians had told me that although my liver wasn’t in great shape, they felt like it would recover once I was off the TPN and able to eat again. Although they listed a liver as an organ to consider including, they also told me if the organs did not come with a liver, they would still do it. They didn’t want that to hold up the transplant as long as they felt I would recover well without it. Unfortunately, that ended up being exactly what delayed my transplant on two occasions.
On the phone that night, my physician informed me that at the last minute they had found one problem. The organs had not come with a liver and two of my liver ducts were reversed and my liver could not be connected to the donor’s small bowel. My doctors were also utterly devastated. One could not handle making that call to tell me. The other one, before discharge, came to OR holding, explained the complication further, and gave me a kiss. As the news hit me and the long night of mixed emotions took over, I sank into a deep state of depression and anger. My mom knew I needed to get out of there as quickly as possible. I could barely speak. That weekend I struggled with the anger, depression, and a new kind of fear. Fear I wouldn’t have another chance. I had received few calls when I was healthy enough to be active on the list, and I was getting worse. My odds of getting a call during a time when I was eligible to go through it were slimming. They were struggling to keep me alive. I was starting to lose my desire to live. I had fought for so long, and I was so tired of fighting. I just wanted to go home instead of continuing the care separated from my home environment only to end up not receiving a transplant at all in the end. There was no guarantee I would receive another call anytime soon.
Still, I continued to wait. I continued to fight through complication after complication. I continued to stick by the phone in hopes that the next call would be the one – the real one. I struggled with anger, depression, and lack of interest in life.
My body started to show signs of how desperate it was for new organs. Two months after that call, in March 2016, I was admitted to the hospital with fluctuating blood pressure. My younger sister, who had been in town for the weekend, clung to my mom in tears before going home with the belief that she had just left me at the hospital after seeing me alive for the last time.
The next morning, my younger sister received a call she wasn’t expecting. While at work, when told my older sister was on the phone, she thought it was to let her know I had not made it. What a surprise for her to find out that she was going to be making the trip back to Pittsburgh but not for what she expected. The words “Carissa is being taken into the OR right now. Her organs arrived and match!” were hard to comprehend. She had to question further to make sure it was actually a go and not another false alarm.
At this point I was so sick and unstable that my doctor was not sure he should go through with it, even though an even more perfect match than the previous ones became available. He felt like I would not make it off the operating table. However, realizing this may be my last chance, he decided to move forward. I almost didn’t believe it. I didn’t have exceptionally high hopes that it was actually going to happen.
Two days later I woke up in TICU (transplant ICU). It was then I found out I had not only received the four required organs but a liver as well. My liver tests and symptoms had not clearly indicated the severity of my liver damage, but they saw how severe it was when they were performing the operation. If the organs had not come with a liver, I would have required a separate liver transplant once I had recovered from the initial transplant. Not only would this have delayed my ability to recover as quickly, but the chances of rejection are higher when organs do not come from the same donor.
This initially devastating situation ended up being for the best. I will always be thankful for the fight I managed for the additional two months so I could have the best recovery and still be alive to fight over 10 years later.
What seemed like the biggest blow in life turned out to be the best thing for me. That’s why it is so important to me to stay strong, never give up, and consider how a bad situation can have surprising outcomes.
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Thinkstock photo by Medioimages/Photodisc
Carissa Haston is the founder and president of G-PACT, Gastroparesis Patient Association for Cures and Treatments, the leading nonprofit in the U.S. working on a cure for DTP. Digestive tract paralysis includes gastroparesis (GP), chronic intestinal pseudo-obstruction (CIP) and colonic inertia (CI). At 23 years old she founded G-PACT in 2001 (you can also connect with G-PACT on Facebook). She had to have a five-organ transplant because of gastroparesis and CIP (small bowel, stomach, pancreas, liver and duodenum). She had to receive a liver because her liver failed on TPN (the IV nutrition). She had lost all of her veins for central lines due to sepsis and was 62 pounds at time of transplant. She’s still kicking over ten years later! Carissa also suffers from multiple other conditions including mitochondrial disease, dysautonomia, Raynaud’s phenomenon, osteoporosis, long QT syndrome, optic neuropathy, dumping syndrome, a swallowing disorder, advanced brain atrophy, other neurological conditions leading to frequent falls. and generalized chronic pain. She has no colon, has an ileostomy and is fed through a j-tube. Carissa has a B.A. in studio art with a double concentration in graphic design and illustration. Her dream has always been to become an art therapist because in addition to writing, creating art has always helped her cope. She also dreams of writing and illustrating her own children’s book someday. Currently, she is working part-time at her local public library.
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