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Krystal-Organ Recipient

March 13, 2016 is a day I’ll never forget. I call it my D Day. The day of my death. This is the day I, along with my family will never, ever forget.

I awoke that morning in a panic. Working night shift at the local hospital had taken its toll on me. I had an important engagement I needed to get to, but not without that first cup of coffee. I made my coffee, and sat down on the couch with my husband to discuss our very long day that we had ahead of us. I took the first sip and immediately didn’t feel right. My stomach was cramping and the pain radiated to my back. I’ve had these episodes many times in the past, so I knew what was coming. I took another sip hoping it would go away. Boy was I wrong. To the bathroom I went. Vomiting ensued, and the pain was absolutely unbearable. I stayed in the bathroom for nearly an hour, sitting Indian style on the floor with my back bent as far forward as I could take it to where my forehead was nearly touching the floor. I’ve learned over the years that this position was the one and only position I could ever find relief. My husband had become accustomed to these episodes, so he sat in silence as I suffered, knowing there was nothing he could do. He gently picked me up off of the bathroom floor as I screamed in pain. He placed me in bed where I assumed the same position. Hours passed, and still no relief. I had already taken my medicine regime that would sometimes save me an ER trip. It didn’t save me this time.

We got to the local ER (where I used to work so I know all the doctors and nurses) and they immediately took me back. They’ve seen me in this shape many times. They administer the only pain medication that would even come close to touching the pain, which was Dilaudid. I was put through a battery of tests, to which all came back negative (they always did). I was beginning to think I was going crazy! They admitted me for pain management and thankfully had some relief.

March 14, 2016
I don’t remember much about this day. I know it was a Monday. That’s about it. I don’t remember who visited, although I know I had quite a few visitors. I don’t remember my parents, my husband, asking for pain meds. It’s all a blur. But what I do remember, I wish I didn’t. This is where I died. This is the day that I, along with my family will never forget.  That night I awoke, in the same position, sitting Indian style with my face laying on the bed in front of me. I felt as if I had really bad GERD or acid reflux. It was burning my throat to the point that I had to get a bed pan incase I vomited. I grabbed the bed pan and simply opened my mouth over top of it. It was blood, dark red thick blood. It wouldn’t stop. It just kept coming and kept coming. My husband was asleep in the chair next to me. I woke him up in a panic. He went to the door and screamed down the hall to the nurses that I was vomiting blood. Thankfully a certain doctor was on the floor at the time. By the time the nurses and doctor got to me, which was only seconds but felt like hours, I had half of the bath basin full of blood. I was immediately sent to ICU. Scared was an understatement. Working in healthcare, you know when you’re vomiting blood, you’re in trouble. From there on out was a blur. I had lost so much blood at this point (internally) that my memory is pretty much non existent except for a few things.

I remember the insertion of the NG (nasogastric tube). To say that was a horrible experience would be a huge understatement. I also remember my husband and a very good friend of ours, who is a PA, talking what seemed like very loudly in my right ear, somewhat behind me. I remember asking what they were doing. They were pushing blood. Once again, if you have to push blood, you’re in trouble. The last major event I remember was me needing to use the restroom. My pride wouldn’t allow me to use a bed pan. I just couldn’t, and wouldn’t. My mom and husband got me up to use a bedside commode. It was nothing but blood. At that point, I passed out. I remember hitting the bed, hard. My husband had picked me up and threw me on the bed. I guess the impact woke me, although after I heard them screaming for the crash cart, I was right back out. I don’t think I fully coded, but I was close. At some point I was taken down to CT, to which it showed I had a Volvulus (twisted intestine). I was also taken down to the operating room at some point, to which the news my family received was devastating.  I had lost all of my small intestine and most of my large intestine. My family was handed a death sentence. After some time to recoup and think about their next move, it was decided that I needed to be flown to a better equipped hospital, so that’s exactly what happened. I was flown to a hospital in central Kentucky. Once I was there, I had became so septic that my prognosis was not good. I had a very low chance of survival. After a few hours of the staff getting me stable enough for surgery, I was taken back to OR again. My stomach contents and what little large intestine I had left had leaked out in to my abdomen, which was what caused the sepsis. They cleaned my abdomen out as best as they could and removed even more large intestines that had died in the hours before. At this point it was a waiting game. A day later, my vitals were stable enough to return to OR. I went back to clean the abdominal cavity once more and to reverse my gastric bypass in order to give me a G tube. The G tube would allow me to drink and to drain stomach acid where I had no intestines to rid itself anymore. As bad as I hated that tube, it gave me many months outside of the hospital and a semi normal life. I awoke a few days later. I was on the vent for close to two weeks. Even though I was awake and alive, once I was told what happened, I couldn’t believe it. I knew what this meant. Infections, living in a hospital, no chance of a normal life. To say I was devastated would be an understatement, but I was alive. The weeks to come would prove to be a challenge. The trauma my body had been through was taking its toll. I was swollen triple my size; I couldn’t use the bathroom by myself; walk by myself; I couldn’t even brush my teeth by myself. The pain was unbearable. A pain that I’ll never in my life forget or be able to describe. During my hospital stay, they taught my family and I how to keep me alive. I had a port inserted into my right subclavian, which was, and still is my lifeline. That port allowed me to “eat” but I couldn’t eat. I could drink (but I didn’t absorb anything, it all came back out of the G tube). TPN (total parenteral nutrition) was my food for months and months, and I was given that through that port. TPN supplied me with the nutrients I needed to keep my body alive and functioning. I was on TPN for 16 hrs a day, every single day. I also received a bag of IV fluids daily. I was fed like this from the time I was discharged on April 9, 2016, until Dec 22, 2016. Why Dec 22nd? That’s my Alive Day!

Before leaving the hospital in April, my surgeon made the recommendation that I start the process of an Intestinal Transplantation. What? They actually do that? I had no clue that was even possible. Thank God it is! My surgeon highly recommended Jackson Memorial Hospital in Miami Florida. As you could imagine, there’s not very many places in the US that does these types of transplants. After some research, I learned that this hospital has the highest success rate among intestinal transplant patients. We gave the OK to make the referral. That was the best decision my family and I have ever made!!

The months after I lost my intestines proved to be very difficult. On top of healing and making myself stronger, we had the task of making sure insurance was covering everything I needed to keep myself alive and the pending transplant. My family and I literally went through hell getting insurance to cover everything I needed. This wasn’t just piddly stuff. This was medications to keep me alive, this was a life saving transplant. We fought with everything in us to get approved when we were denied. Our fight didn’t go unnoticed and we won, finally! We were Miami bound.

September 1, 2016 my mom and I made the move to Miami. This move was part of my treatment plan with my transplant team. We had to live within 4 hours of the hospital, so that’s exactly what we did. Anything to keep myself alive. September, October, November, and the beginning of December were full of constant appointments and tests. Painful tests. I was so so so glad when I finally finished testing. There were so many days I laid on a gurney with tears streaming down my face, saying to myself “this is now my life”. Not only was it hard physically, but mentally as well. Those were the longest 4 months of my life and I never want to relive them again!

December 2, 2016 my transplant coordinator called me. I was finally officially listed on the UNOS Transplant List as of 1710 PM. Relief!! 265 days after I lost my intestines. I felt nothing but happiness and relief. No more tests, no more pain, I could relax and wait on the call that would save my life. If only it would have been that easy. December 17, 2016 at 0200 AM my moms phone rang. I knew it was the call and sure enough, it was. They had my organs. I got up, showered, packed a bag, and we headed to Miami to the hospital. I cried the whole way to the hospital. I had months to prepare myself mentally for this moment, but I wasn’t ready. I thought I was, but I wasn’t. I was crying for my donor. Somewhere out there, a family was saying goodbye to their loved one. I wasn’t ready for that, at all. I didn’t think it would bother me as much as it did. I knew I’d be very thankful, but I wasn’t prepared for the flood of emotions that came with it. We get to the hospital and we weren’t there for more than an hour when a doctor that I didn’t know came in and told us that they couldn’t harvest the organs in time. It was a “dry run”, which we were warned about. We knew it could happen, and we were fine with that, or I know I was. I knew I wasn’t ready for this transplant emotionally. We gathered our belongings and went home, talking to God the whole way.

I spent the next week talking to God as much as I could. I pray daily anyway, but this was a different kind of talk. At this point, never in my life had I ever felt closer to God than I did then. I could feel Him with me, every step, every heart beat, He was right there telling me I was going to be ok. Assuring me he didn’t bring me this far to leave me now. He kept his word. On December 21, 2016 at  0701 AM mom’s phone rang again. It was the hospital, they had my organs. This time he said it looked like everything would work out. A calm came over me. God was with me. God calmed me. I showered, got my bag, that was still packed from the last dry run, and mom and I drove back to Miami. We spent all day in a semi private room getting all kinds of tests done. I thought testing was over, guess not! Around 1600, they let me know the organs were good! Transplant was a go!

In the very early hours of December 22, 2016, I received the gift of life. Because someone said YES, I can now live, I can eat, I can be a normal 29 year old woman. I can live my life, all because my donor, or donor family, said yes to organ donation. I went 285 days without food without food touching my tongue. On December 31, 2016, I ate a bite of cheeseburger, a bite of a turkey sub, and a couple of fries. Because of my donor, I was able to do the one thing all of us takes for granted, EAT! Because of my donor, I’m alive! Because of my donor, my mom and dad has their daughter back! Because of my donor, my sister has her sister back! Because of my donor, my nephew has his Auntie back! I’m alive, because of my donor, and I couldn’t possibly be more thankful to that anonymous person, to my anonymous hero.

You think it won’t happen to you. When I was 18, I checked YES on my Kentucky Drivers License and signed my name to become an organ donor. I never gave that choice a second thought. If I die, why would I need my organs? I don’t! My life is saved because someone made that simple choice. A selfless choice. The most honorable choice. Since I’ve shared my story so many people have wrote to me and even sent me pictures showing their license and their Organ Donor emblem. They only chose not to be an organ donor because they were misinformed, or they didn’t want their liver going to an alcoholic, or their eyes seeing the world while they were dead. Too many people are sick. Too many people are dying every single day waiting for organs. What happened to me, can happen to you. It can happen to anyone. On March 12, 2016, I was a normal 28 year old woman living life to the fullest. In one day my world was turned upside down and I was in the fight for my life. My donor, my hero, because my donor said yes, I get a second chance at that life. I couldn’t possibly be more grateful for my donor and their family. Without them, I wouldn’t be here to tell you this story. Because of a hero, I’m ALIVE!