“My problems began on Halloween of 2017. I was out trick-or-treating with my daughter and felt an ache right below my breastbone and straight through to my back. The pain got drastically worse within just a minute and then the stomach pain and nausea hit. I was doubled over on the sidewalk, breathless from the pain and barely able to move.
It felt like what I imaged a heart attack to feel like. I kept trying to stand up and work my way to the car, but every time I straightened my back, the pain would get even worse. I had one or two similar ‘attacks’ like this over the past year or two. When I went to the doctor, they told me, ‘Your heart is fine. Don’t worry.’ So, I didn’t go to the emergency room. I waited and went to another doctor the next day. That was probably a mistake. Little did I know that the pain I felt from the attack was nothing compared to what it would be a few months later.
These attacks became more and more frequent and they all lasted between 15 and 30 minutes. They left me weak, shaking, and physically exhausted. It was happening at home, at work, at the grocery store…everywhere. I was living every day in fear of it happening again. It got so bad that I started teaching my eight-year-old what to tell people if it happened in public, or how to handle the situation if I couldn’t make it to the phone to call 911.
I also experienced fatigue, which started probably years before the attacks did. It wasn’t too bad at first, but it was enough for me to complain about it. All of my friends would say, ‘You’re a single mom. It’s normal to be tired.’ While that may be true, I always responded with, ‘No, I think something is wrong. I felt more rested when she was a newborn waking up every few hours.’
It wasn’t until after the pain started happening more frequently that the fatigue got significantly worse. I struggled to wake up in the mornings and could barely stay awake at work. When I got home, I would give my daughter a snack and immediately go to sleep, only waking up to feed her dinner and get her to bed so I could go to sleep again. Then I would start the same process over again the next day. My daughter started getting upset and yelling, ‘All you do is sleep!’
I did not ignore these problems. I went to the doctor numerous times over the seven and half months leading up to my emergency room visit, either for the painful attacks, the fatigue, or both. Almost every time they barely looked at me and never did any imaging. They just told me I had acid reflux and prescribed me medicine for it. It never helped. I had been diagnosed with acid reflux disease in high school and NEVER had problems like this. I felt like a hypochondriac. I felt like they didn’t believe something was wrong and just wanted to get rid of me.
I finally saw one doctor that ordered blood work. He found that I had a vitamin D deficiency. He also told me the pain I was getting was from my esophagus having spasms. That made more sense to me, but my problems never got better even after that diagnosis. He may not have gotten everything right, but he was the only one that made an effort and, to this day, is the only one at that office I want to see. The vitamin deficiency was probably a sign of what was to come, but neither of us had a way to know that at the time.
Fast forward to June of 2018. The nausea became a constant thing for me. I went out of state to see family and was at my sister’s place for only about five hours when it happened. The whole trip there I had felt a little nausea but not enough to stop eating. When I got to my sister’s place, I picked up a black coffee as I got into town because I was so tired (even though it was only 6:00 p.m.) and then had dinner and a small drink. Everyone left to go walk the dog.
I told them I would stay there and relax because I was starting to feel worse. Right before they walked back in the door, the pain started. The second they walked in I said, ‘I hate to say it, but I think I need to go to the hospital.’ Within seconds of saying that, my pain level went from about a 3 to 1000. My daughter started bawling and wouldn’t let go of me. I told everyone I was going to throw up. Someone rushed to get a bowl as I hugged and tried to comfort my daughter who was insisting on coming to the emergency room with us, all while doubled over in pain and barely able to move. I probably should have been more scared, but my most overwhelming thought was my concern for my daughter. My second most overwhelming thought was, ‘I knew something was wrong…..I was right.’
After someone plied my daughter off of me, my friend, running on only a few hours of sleep, grabbed my keys and we began the drive to the hospital. It was about a 30-minute drive and I was still throwing up as they signed me in. She stayed with me until 5 or 6 in the morning even though she had to get up only a few hours later.
My daughter was messaging me with her tablet until 3 in the morning. No one got any sleep that night. I need to point out all of this because I have the best family (and yes, that includes my friend. She is more of a sister than a friend). They are always there for me and that night they went above and beyond. I would have done exactly the same for them.
That day, I was diagnosed with acute pancreatitis caused by gallstones. My gallbladder had been filled with sludge and had a potential polyp. The inflammation in my pancreas was so high that it set a hospital record. I was finally admitted and had a room at around 7 a.m. The next few days, I was taken care of by the finest team of nurses and doctors I have ever met. I was only allowed to have ice chips for a day or two and I mostly slept. Once they confirmed that my pancreas inflammation was down to a normal level, I was allowed to have clear liquids. I didn’t have any solid food until my fourth day there.
As tired as I had been over the past few months, I was even more tired following the acute attack. Even just talking on the phone was exhausting. Every time I got up to use the restroom, my heart rate would shoot up and a nurse would come rushing into my room. I had to wear a heart monitor for a few days. They eventually had a cardiologist look at my heart to make sure everything was okay.
I didn’t know it at the time, but acute pancreatitis can cause organ damage to other organs besides the pancreas and even organ failure. Thankfully, my heart was okay. Due to all the sludge and the polyp in my gallbladder, however, it needed to be removed. The surgery went well, but they wanted to keep me over night due to the problems I had been having with my heart. Luckily, I was able to go home the next day.
The surgeon told me that the damage to my pancreas was so bad that my condition would be chronic. I now have to follow a low-fat diet the rest of my life. The months following my attack were riddled with fear and anxiety for both my daughter and I. She still worries constantly. I was persistently expecting another attack and fearing every new food I ate. I have adjusted a little since then, but there is still always a little fear when trying something new.
I’ve dropped a lot of weight, and very quickly. I lost 45 pounds and 4-6 inches off my waist, most of which in the first month following the attack. I joined an online support group which has helped immensely. It has made me realize how incredibly lucky I was. I can still eat most foods without a problem. Many people struggle to eat at all and some have to be on feeding tubes for months or even more than a year.
My weight loss has slowed down. Some continue to lose weight no matter how hard they try to put it on. One person was down to 80 pounds and refusing a feeding tube. I still have my entire pancreas. It is damaged, but whole. Many have only small portions of theirs or even had it completely removed. The disease is progressive, so I realize this may not always be the case for me. But for now, I am thankful for what I have and plan on living life as much as I can before it gets worse.
I have had many people ask me why I don’t sue the doctors I saw before my diagnosis. The way I see it, everyone is human and everyone makes mistakes. The only difference between their job and mine is that when they make a mistake at their job, the consequences are much worse. They are still human. I am too. I admit I still get angry sometimes. It should have been caught. I feel like at least one doctor should have ordered an ultrasound that would have found the sludge in my gallbladder. But I forgive them.
One thing I have learned from my support group is that a LOT of people are either undiagnosed or misdiagnosed for a long time. A lot of doctors just don’t think to look for gallstones and aren’t very familiar with pancreatitis. I am not alone. I want to use my experience to help raise awareness not only for other patients, but also for the medical professionals.
I still often feel like my family doctor does not take my complaints seriously and have almost walked out of some appointments when I was told pain from my pancreatitis was just ‘acid reflux’ again. Sometimes you just have to be your own advocate. If you feel like something is wrong, it probably is. Switch doctors, switch practices, do whatever you have to do until you find out what is wrong. Do not let them make you feel like you are crazy.
I still get flare ups. Horrible pain that wraps around my side and leaves me in bed, curled up in pain. When this happens, I only have liquids.
There is no cure for this disease, but I will fight it as hard as I can. My daughter takes care of me when I have problems with it (so far it hasn’t been necessary, but the other day she actually pushed me into my bed and yelled at me every time I tried to get up) and I know the rest of my family supports me and it means so much.”
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