Posted by juliebernal | Filed under Acute & Chronic Pancreatitis, Research/Support/Hope, Sphincter of Oddi Dysfunction (SOD)/Biliary Disease, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
Aug. 17, 2011
The other day my mom said some words to me that truly moved me. She talked about how some people who are sick can’t find the strength to learn about the illness. Some people can’t handle thinking about it while others need to know every detail. Being as ill as I was, she told me that she was proud of me for doing so much research and for not giving up. She said that the research is what probably saved my life.
As far as others that I’ve talked with, the story starts out with, “I had pain and didn’t know why. I felt alone. It became hard to eat. I had many ER visits and many doctors told me there was nothing wrong with me, then after many tests and surgery they said it was something – something rare and something that wasn’t very much understood. And still so many questions. What does this all mean? How did this happen? What do you mean you don’t know if there is anything else that can be done or if it would even help? How do I move forward from here? How do I get by from day to day? What kind of food can I even eat? Is there anyone else out there? Is this really my life? How long can I live like this? Will I be able to make it through the day? Will I ever be pain free? What is the next step?” I’ve heard these words by so many. The same story. The same questions. The same fear of the unknown.
After the second time I got acute pancreatitis, I started to do research. The first time I was told that it would go away in a few days and it was probably a one time thing and not to be worried about it. The second time it happened, I just got scared. I researched and went looking for answers. I didn’t find anything very helpful. Just don’t drink, eat a low fat diet and rest until you feel better. I also learned that I never wanted my acute pancreatitis to turn into chronic pancreatitis. I saw many doctors about my attacks and not one of them had any answers. It was, “You are young, you are healthy.” It took a few years before I found a doctor willing to take action. After my gallbladder came out it was like I found myself at the bottom of the ocean again – exploring in the darkness - just left feeling cold and weak. I thought that the pain would have been cured but it was not. I needed some kind of light. This is when I was told I had the “rare” sphincter of Oddi dysfunction (SOD). “What in the world is that,” I thought. And so the research began again. I found a blog post about sphincter of Oddi dysfunction and it had over 2,000 comments. Now this was before Facebook and online support groups were really big. Wow! Amazing! I thought, “This girl who wrote this post is my hero and I can’t believe there are so many others out there with this disease.” I learned about ERCPs, sphincterotomies, bile duct diseases and found out who the best doctors were for treating SOD. I read medical journals and study results and compared notes with others. I even watched a video of an ERCP being performed so I could see for myself. We talked about our own history and talked about what did and did not work. I battled SOD on and off. Even a few years ago, I thought I was better and then out of the blue, it would be back. The painful, uncontrollable spasm that always put tears in my eyes – I would find myself curled up in a ball with my knees to my chest, hands shaking, weak and sweaty. It would always happen at the most inconvenient time and place.
I remember when I first read about the Total Pancreatectomy and Auto-Islet Transplant (TP/AIT) from some research. I was trying to learn about more advance surgery options. I didn’t really understand it much at the time and hadn’t talked to anyone who had it done. I remember when one of the girls from the support group who also had similar symptoms as me, came back saying she needed the TP/AIT. I was totally shocked! She had SOD and now they are saying that her pancreas needs to come out. I cried for her, for me and for others who were in our shoes. I had no idea that this disease was able to cause so much damage. I think when you first learn about SOD, you are told that it can be treated and you will be fine. Then after the second or third time going back for an ERCP, you start to think that maybe the word “fine” is subjective. What is “fine” really? Does it mean that you will fight with everything you have and suffer on and off, but you will still be alive, so you are fine? I guess after my friend got the news that she needed her pancreas out, I knew it would only be a matter of time before I would be in the same boat. I thought maybe I had a few years. I started to get really sick and it was happening fast and it was taking over me like a freight train. I found some support groups for pancreatitis and spent every moment that I felt well enough, researching the best doctors for the TP/AIT. I began questioning if I was sick because of the SOD or because of my pancreas. I learned every detail I could about the surgery and transplant. My last ERCP (8 months after learning about the TP/AIT) the doctor came in and gave me the shocking news, “Your pancreas is sick and it needs to come out.” I didn’t even mention to him that I heard of the surgery. I let him talk as he gave me the speech that I already knew word for word, “95% of people think you can not live without a pancreas. But that’s not true, you can…” Wow! The day finally came, the day I was fearing. It looks like that acute pancreatitis ended up becoming chronic pancreatitis. Wow! What? Why? It was around Christmas and I knew how serious this surgery was. I knew how bad my health was – how sick I had become. I even told my family that I wasn’t sure, but it could be my last Christmas. I did everything I could to make it special. But with all the tears and fear of the unknown, I still had hope.
From all that I learned, I knew it was going to be a hard and long surgery. There was no promise that it would go smoothly. I believe they said there is a 40% chance of some kind of complication. A chance of another 2-3 more surgeries could be needed. 50% chance of becoming diabetic. And could be months to years to recover. While some never fully recover. Some continue to have pain. Some still aren’t able to eat. And many end up with continued digestive issues. I knew going into it, it may not go as planned. But not having the surgery, I was looking at a hard life in pain and only a matter of time before seeing my own death. So, death or take my chances? The hope for survival beat out the fears of complications. What did I have to lose, really? After all, I felt there were way more pros than cons. I could have a life with little or no pain (instead of sever daily pain), I could end up being able to eat again. I could have less and maybe no more ER and hospital stays, I could have the chance to stay alive. I could get off pain medication. I could do it now and increase my chance of having a successful transplant and possibly not become a brittle diabetic. I could get rid of my pancreas before it ends up getting cancer. I could have a future and a life. For me, hands down no question about it – I went for the surgery. I went for fighting for my life. I was not about to watch myself die – not when there was still an option out there. So, I knew that I had to talk with the best there was. I had to go and have it done where it was pioneered. So I did. And all because of an email address that I found while doing research – I found hope. I found my answer. One email, a few hours later, and it was the start of a beginning that changed my life. I knew I was meant to have my surgery at the University of Minnesota Medical Center of Fairview from the moment of my first phone conversation. Even down to the moment that I first arrived to have tests done. There was just something about it. I knew that all my research brought me to where I was meant to be. My surgery went well and I had no complications and I’m pain free 98% of the time. Am I perfect now, no. Still recovering, yes. But so far, amazing. I’m still alive! I’m hopeful that I will continue to move forward.
Some people find it hard to hear about illness. Some just don’t know what to do with the information or don’t know what to say. But for me, living with it for as long as I have, it has become apart of me. I am not shy about it and have no shame in discussing it. I love learning about disease and finding ways to help. Sometimes there are answers already out there, we just need a little help in finding them. For me, the more knowledge I can soak up, the more hope I can find within myself and the more support I can give to others. And that’s what it is about…making the most of a hard situation and changing one life at a time. As my mom said, “The research has really paid off.”