About

My name is Kristin Molini and I am 22 years old. In June of 2005, I graduated from St. Saviour High school. Never in a million years would I have imagined I would be where I am right now. I was always a hard working student as well as being an athlete. As a little girl, I was a ball of joy. Everyday I would be so happy, no matter what challenges the day had brought me. Life was exciting and I couldn’t have asked for anything more. Now, reality has set in and life is hard, depressing and painful. You might ask, what happened from then till now? It’s a question I catch myself asking God everyday. I was a healthy child but always suffered with stomach viruses as a kid, or at least, that’s what I was told. As I grew up, stomach pain was a very big issue. Around 7th to 8th grade, I went from doctor to doctor, and they all seemed to shrug it off and tell me that it was all in my head.

During my sophomore year of high school, I was recommended to a surgeon who told me that he would be able to take all of my problems away. He told me part of my intestine was dead and if we removed it, things would be back to normal. For the chance of a better life, I went through with the surgery, and it was successful for about three to four months. Even though I had lost 20 pounds, things were still looking better. Around December of 2003, I found myself in every Emergency Room imaginable. Intense pain, crying and screaming for help, but it was always the same thing. The doctor’s would order x-rays of my abdomen and I was told to ride out the pain. I would try to eat and 20 minutes later, I would throw up and be unable to hold down any food. After 6 Emergency Room visits that month, I was diagnosed with “Gastro-paresis”, which means that my stomach is paralyzed. March of 2004, I had a 2nd abdominal surgery because of an intestinal obstruction. At this time I was a mere 88 pounds and hospitalized for a month. This was when I had a Broviac and a j-tube placed. A Broviac is a catheter that lies on your heart and comes through your chest. This is used for Total Parental Nutrition (TPN), which is nutrition fed through an IV, so when you are unable to eat, you still can survive. A J-tube is a tube that is implanted in your small intestine to bypass your stomach, so that a form of nutrition is possible.

Throughout my junior year of high school, I had missed 6 months out of the 10 months of school due to my constant visits to emergency rooms, several operations and being hospitalized. Beside my many medical challenges, I had school challenges. I had to take 5 regents at the end of the year. I had no choice but to teach myself the curriculum. I have always been a fighter and I knew that I would have to pass them all in order to get through high school. I passed all of them. I was finally a senior at Saint Saviour, but I was still unable to eat anything. My family and I had traveled to Rocheste, Minnesota, The Mayo Clinic. We also traveled to the Cleveland Clinic but didn’t have much luck.

 

Even with my teenage years passing me by, I pushed myself to attend my senior prom and graduation, leaving me with memories that surpass those of the operating room. My plan was to attend the C.W.Post campus at Long Island University in the fall and be a “normal” college girl. Things were looking up and I felt that perhaps the ups and downs were over for me. On August 21st, I had met a great doctor who understood my struggle, but yet again, the news was not encouraging. It was finally confirmed that my stomach does have “Gastro-paresis” and my intestines have what is called a pseudo-obstruction along with a chronic volvulus. A pseudo-obstruction means that for months or years at a time my intestines become paralyzed. Chronic volvuluses are the mechanical obstructions, leading me to the operating room. At this point in time, my plans for college didn’t change. I didn’t want to believe that I would have to withdraw from the college I had been waiting so patiently to attend. C.W.Post was still my chance for a normal life, but in the back of my head I knew “normal”, to me, and the average normal life were two totally different things. Like many of my teenage ambitions, the prospect of going to a college far away from home was ripped away from me in an instant.

That very night of August 21st, at exactly 8:00, I started throwing up and was in excruciating pain. I was lying on my couch, crying and screaming for someone to help me. I told myself that I didn’t need to go to the Emergency Room this time and that I was stronger than the pain. I lasted until 2:00am in the morning because at that time, I told my parents, “It’s time to go to the hospital”. We arrived and a few X-rays later, we were told that I had intestines so swollen, that they were the size of huge water balloons. By the next morning, my name appeared on the Operating Room Schedule once again for my 3rd abdominal surgery. As I waited for the transportation to take me to the Operating Room, I took a look around my hospital room. The room was filled with familiar faces. There was my mom, dad, brother, grandmother and grandfather, all there to support my 3rd surgery. My room was complete chaos, with everyone crying and telling me that everything was going to be alright. My parents were crying, and there were surgeons all around. I found myself on my hospital bed, cheering everyone up, smiling, making jokes, telling everyone not to worry.

My dad came with me into the Operating room and he was crying. I stood looking at him and every inch of by body on the OR table wanted to cry but with the tubes and the oxygen mask on, I couldn’t. I gave him a “thumbs up”, while he gave me a last kiss. This was now the beginning of another three hour operation. After this point I was TPN dependent, which meant only two things; 1. Only IV nutrition was available for me and 2. I was still unable to eat solid food. I haven’t eaten a true meal in nine years. In 2006 I had another abdominal operation hoping to fix my problem, but it failed. My doctors then told me that my only option was transplantation.

We started looking into transplant hospitals in 2006. We finally went to Children’s Hospital Of Pittsburgh and on December 1st, 2006, I was listed for a stomach, pancreas and small intestine. We waited for a year, until my liver started to fail. In June of 2007, a liver was tacked onto my list of transplanted organs. With the addition of my liver, I was now due for a modified multi-visceral (4organs) transplant. When we were first listed they told us to be prepared to move to Pittsburgh for up to a year. With this information at hand, my friends and community attempted to fund raise enough money for my family and I to move and support ourselves for up to a year. At this point I had more problems on top of this. Such problems consisted of vertigo once a month for 7 to 10 days, horrible pain everyday of my life, and a family that was undergoing stress beyond belief.

I was getting worse each day that passed, and we had already been to every transplant center around the United States. My last trip to Pittsburgh was in February of 2009. At this point, I was on the waiting list for a lengthy 2 and ½ years. When they were able to see just how sick I was, they were in shock. Their jaws drooped when they received any eyeful of my jaundice stricken skin, a result of my deteriorating liver. I was immediately grateful when I got word of confirmation for a cirrhotic liver. Once we were home and settled in, I thought about my life. I was going from my room to the couch and my quality of life was diminishing. I told my parents it was time to multi-list in New York at Columbia University. I figured that the more lists I was on, the better my chances would be for transplantation. I was listed for the 5 organs (stomach, pancreas, small intestine, large intestine, and liver) at Columbia University.

I was on this list in New York for 5 long agonizing weeks. On the morning of May 4th, 2009, my phone rang, and a glimmer of hope filled up in my heart. I whispered to myself “could it be?”, and with that phone call, my prayers had been answered. I had received the organs that I was listed for at Columbia University. I had dreamt of this very day over and over again for years, replaying the scenario in my mind each night. Each morning I would wake up hopeless, but with that same dream in mind when I closed my eyes at the end of each horrible day. To know that this dream became a reality still startles me to this day. I thank God for it and I can truly say that I now believe in miracles. That day was by far the happiest and most emotional day of my life. I knew that I was receiving palliative care at home, but if I didn’t go through with the surgery, what was my alternative? I was 74 pounds and dying at home.  At 7 am we received a call that there were 5 potential organs for me. We were told to arrive at the hospital at noon, but didn’t go into the OR until 10 o’clock that night. I was hysterically crying because I was afraid I wasn’t going to survive the surgery due to the dangers and the high risk complications, in addition to how sick I truly was. But there was a fight inside me that kept me going because someone tried to help me survive. Prior to surgery I was told many times that I didn’t have a long time to live. This wasn’t a surprise, but to me that makes me live my life differently today.

The first few years are rough between re-feeding, rejection and infection, which are common; I have experienced all of them.  I was hospitalized for about 6 weeks for the transplant and had another surgery on July 9th due to a high grade obstruction. I was in and out of the hospital, but was slowly progressing. I’m not saying things are perfect but I have a road where as before what road did I have? I stand before you today as a multi-organ transplant recipient, and today I am alive because there was someone out there who cared for another life beyond their own, and that life happened to be mine. I am a big believer that I live for 2 people, both myself and the person who gave me the gift of life. There was a light at the end of my tunnel, and it is shining so bright. I hope that I have inspired you to become an organ donor because I am living proof that organ donation and transplantation works.

 

 

Kristin Molini

 

 

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