My (Medical) Story

Willow is lying in a gurney. She has her hair back in a french braid. She is smiling at the camera as she waits to be wheeled away and taken to the OR.

Its been a long way. I am going to try to keep this to the point and focused. This is my story through simply the medical timeline. This wont include all the events that happened in the hospital between friends and family and it wont include the moments in between hospital stays. This is my medical story.

About to get into the gurney to prepare to get the surgery that will either save me or not.

Growing up, I would deal with excruciating abdominal pain attacks. I can remember them as far back as my memory goes. I remember screaming out bible verses and prayers for a moment without pain. I had been seeing my pediatrician for years for this problem. She diagnosed me with constipation first. I was put on every laxative known to the medical world. I was a child. This happened from the ages of 8 through 11. When I became a teenager she decided that I have severe acid reflux and as it began to worsen over the years she said it was an ulcer. When I was 13 I had an attack so bad that my mom was over trying to respect and listen to our pediatrician. She packed me up, drove to the ER and within an hour we had test results saying that I had pancreatitis and would be staying overnight to manage pain. We had an answer.

I can tell you with certainty that I was in pain on this day. I remember having to tell Mitch my stomach hurt. That is Mitchy boy right next to me. It is weird looking back on these pictures and knowing the answer to the pain I was feeling.

You see all those years, my mom had been telling my pediatrician, Dr. Wagner, that we had a family history of hereditary pancreatitis. However, my pediatrician believed it was too rare. Even though all my symptoms were textbook for pancreatitis attacks she said no. She never once tested me. It is a simple blood test and she tortured me for no reason. Once I had been diagnosed I was in the hospital for weeks at a time. I still had Dr. Wagner as a pediatrician. As I began to get sicker and sicker we did everything we could to involve her but she enjoyed pretending to help. Eventually, I was too ill to stay with a doctor who refused to help.

I began seeing the doctor who diagnosed me with pancreatitis Dr. Elizabeth Underson. She was and is amazing. I am so thankful for her. She did everything to help me live my life as normal as I could as well as making the best decisions for my long term health. Eventually, I needed an ERCP. She roped her colleague in, who was a endoscopic interventionalist for adults. When I first met him, well lets just say I felt like he needed someone to keep his head small enough to fit through the door. After my first ERCP with him we became best friends. His name was Dr. Faris Murad and we are still best friends to this day. He even read a scripture at my wedding. The reason he was involved there was for a reason we haven’t reached yet. Eventually, I was having ERCP’s way to often and I was becoming to sick to manage. It was the beginning of the end and he knew it.

My mom had done some research and found this surgery called the Total pancreatectomy with auto islet cell transplant that they were doing in 3 hospitals across the country at the time. She brought it up with Dr. Murad and he said he would look look into it but he wasnt sure we were there yet. He said he was leaving for a pancreatic conference that week and would let us know when he got back. He must have been there for about a day before we received a call from him. He told my mom we needed to move forward with the surgery as soon as possible.

In January of 2014, I went to be evaluated by the total pancreatectomy with auto islet cell transplant team to see if I qualified to be a candidate. They said that I met the three reasons they needed me to have which was 1.)failure to thrive, 2.)prognosis of a terminal illness due to what they believed was a large risk for pancreatic cancer in the next few years 3)Pancreatic stones which kept coming back and would block my ducts leading to liver failure. Because of these three things they felt I needed this surgery and since I was under 18 they believed it would be successful.

On March 10, 2014 I went up to the university of Minnesota to have my total pancreatectomy with auto islet cell transplant. This was what they planned on being a 10 hour procedure where they removed my pancreas, spleen, appendix, gallbladder and duodenum all removed. They then removed the islet cells from my pancreas and injected them into the portal vein of my liver in hopes that I would not be diabetic. I became diabetic but the main goal of the surgery was removal of my pancreas so that I wouldn’t develop pancreatic cancer and die. I also, needed to have the ability to eat which I do compared to what I had before the surgery. When they got in there they found what they said was the worst pancreas they had ever seen and they ended up having to work an extra 2 hours on the removal because it was stuck all over everything.

This was a few days after surgery once I was extubated which they do NOT properly show in the movies & shows. It was so painful and required holding my pillow pet onto my stomach and coughing out the tube. Can you imagine coughing after having your entire digestive system rearranged and removed and cut into.

I was told that I wouldn’t remember the first 3 days after surgery. I remember the moment I woke up in some room that was mixed between an OR & an ICU room. I couldn’t talk… I saw my mom.. I saw tubes, cords, medicine, medical things EVERYWHERE. I thought I was choking. It turns out it was just the intubation and gunk that was making me feel like I was choking. Technically, I would not be able to choke since I was intubated but it felt like I was. They began suctioning out my throat. I signaled to my mom to try to write something. I don’t know how she read it she kept the papers somewhere. I wanted to know what day it was…. she told me it was about an hour after the surgery. My heart shattered. I was destroyed. I thought for sure I wouldn’t wake up to deal with this until the 3rd day and here I was only an hour after and wide awake. Let the games truly begin.

The next few days (weeks) consisted of some pretty trauma worthy experiences for my parents. I remember parts and part s that I don’t I may have looked like i would but the fear eventually drifted away so much that looking back I don’t even remember it all. I was on so much medication. They told my parents that this was the most painful transplant procedure known to man and keeping pain under control was going to be extremally difficult. I had a hard time with respiratory depression meaning that I had to be reminded to breathe. I developed ICU psychosis. Yes, that was just as much fun as you think. My poor parents as they watched me interact with family members that I thought had come to visit but in reality were just my imagination. Watching me hug nothing. Watching me dreaming of eating a hamburger. Its funny now.. except lets not talk about it too close to bed or too much because it isn’t as funny when it starts triggering our PTSD. There were some scary times but with my amazing mom, dad, sister, family, friends, doctors, and God we made it through.

Since then, life has been a serious of extreme ups and downs. There have been good times and bad times. There have been new diagnoses and there have been new fixes. Honestly did I expect to be a lot healthier than I have been? 1000% but I just try to remind myself that I am thankful to be alive. I would not be where I am if I had not had the surgery. To be honest, I would not be here at all. So, I will always thank God for putting the right people in my life so I can be writing this today.

I will finish my post surgery medical updates on a different post.

With all my love,

Willow Ann