What up. So everyone, this post is my attempt to wrap my mind around the crazy, weird, intense, hazy fog that is my life right now. It is also to share with everyone just exactly what has been happening with the dana-meister (me) as of late. It is much easier to update everyone all together here rather than sending separate emails, facebook messages, text messages, phone calls etc. etc. etc. I apologize in advance if this post is all over the place. Lets just blame it on the medicines.
Okay so here is the low down or is it down low? Either way, I have been very, very sick lately. I usually try to sugar coat the situation or make light of my health but there simply is no way to do that now and it would simply be untrue. So Ima be real wit ya.
In November/December and then again for this past month, I was hospitalized for pancreatitis. This would now make the 12th time in the past 6 years? Not sure. Its definitely double digits.
As some or most may know, I have pancreatic disease and have since childhood. The disease has progressed and evolved over the years. In the these last couple of years, I have started having chronic pain, the pain has worsened, the pain medications have increased, and the hospitalizations are longer and closer together. All of this to preface another discussion about my treatment options and recent decisions in that department...
Basically there isn't a whole lot you can do for chronic pancreatitis and pancreatic insufficiency. Its another one of those stinky diseases without a cure. Its also one of those stinky diseases that don't have a whole lot of treatment options. Since my disease has progressed so much, I now have even less options. These options include either having a permanent feeding tube, constant pain medications, and more hospitalizations OR a surgery.
About two years ago, my family and I heard of a newer, innovative surgery being done on individuals with pancreatic disease at the Mayo Clinic in Rochester, MN. The surgery was a total pancreatectomy and islet cell transplant surgery. The simple explanation is this: the surgeon will first remove my pancreas, spleen, part of stomach, and part of my intestines. Then the scientists will harvest my islet cells from my pancreas and these islet cells will then be transplanted back into my liver. My liver will then house the islet cells with the hope that they will take on the function of the pancreas in their new organ home.
Wowza. Okay so the first time I heard what the surgery consisted of, I laughed. I was like no way am I that desperate. I will never let anyone remove a vital organ from my body! Never! But people, that was two years ago. My disease was a totally different animal back then. A much tamer animal. Back when we originally heard about the surgery, we heard of it being done at the Mayo Clinic. Although I was terrified and not really sold on the idea, my family and I nonetheless packed our bags and headed up to Rochester. Long story short, we decided that at that time, the surgery held too many risks and was therefore not for me and we went home.
The story picks up again about two years later in September of this year. I travelled to MUSC (Medical University of South Carolina) in Charleston, SC for a couple of different procedures. These procedures were kind of a last ditch effort to help stop my chronic pain and some other issues I had been having. The procedures were essentially unsuccessful. These unsuccessful procedures caused my team of doctors to suggest that I meet with the surgeon there that had recently started performing the pancreatectomy and islet cell transplant surgery. I was still unsure but agreed to meet with her. After meeting with her, I was encouraged and started to feel like maybe this surgery wasn't the most insane idea on the planet.
After months and months of praying, talking with doctors, talking with family and friends, and a little more praying I began to feel this surgery was the right move for me. I contacted the surgical team and we began moving forward with the candidacy process. So after ANOTHER hospitalization in February, I was pushed over the edge. I got the confirmation that I was looking for. The confirmation that the way I have been living, in constant pain, always in the hospital, feeding tubes, and pain medicine...isn't what I want for myself. I want to live a "normal" life. To feel good enough to work. To feel good enough to finish grad school. To feel good enough to just enjoy the wonderful people God has put in my life. So another long story short, the decision was made. I am having the surgery in April. Eeeeeeek!
Now that I have made this decision, everything seems to be happening so fast. I have been faced with some pretty big decisions and honestly, its all very terrifying. I like to control everything in my life. And none of this is in my control. I have had to place it all in God's hands and take the biggest leap of faith I have ever taken.
So now this terribly long post is coming to an end. I do apologize for the novel I just wrote but it was hard for me to write on this subject. But once I started..it just kept going and going. While on this subject, this blog will be changing along with me as I walk through these next few rough months. I would like to use this blog as a way to update friends, family, and others about where I am at with the surgery, recovery, and so forth. Kinda like a blogumentary of my experiences. I don't know what that will look like but we will just roll with it as it goes. This is the beginning of my journey to a hopeful future! eeeee! I would appreciate your prayers for my family and myself as we go through this tough but exciting journey. Until next time...
Here is a video done by my surgeon at MUSC on the total pancreatectomy and islet cell transplant surgery. The surgeon in the video is the surgeon that will be doing my surgery. The video is really informative but don't worry its not gory or anything. :) Please watch!
