The story of Chandler
I turn 28 this year. I thought my 20’s were supposed to be the most exciting and fun of my whole life, but I have spent all of my 20’s suffering and in pain. It started seven years ago. I remember the day so clearly because it’s when everything changed. I was outside playing with my nieces and went inside for some water. After I drank just a few sips, I was hunched over in horrible pain. It was like someone had punched me in the stomach and left their fist there. It was the worst pain I had ever felt. From this moment on, every time I ate a bite of food or drank a sip of water, I got debilitating pain. I began losing weight and getting dehydrated because I just couldn’t eat or drink enough due to the pain.
I went to a gastro doctor first. They said, ‘Oh, it’s probably just indigestion.’ So they ordered a few tests, which came back normal. During this time, I was also having some pelvic pain and my gynecologist thought I might have endometriosis. So I had my first laparoscopy. They found endometriosis everywhere and also interstitial cystitis. Right before the surgery, they performed a tap block, which is where they insert two huge needles with medicine in your abdomen directly to the nerves to provide pain relief. For the next few months, my pain after eating and drinking was gone. We weren’t sure if it was thanks to the surgery or the tap block. Until the pain returned a few months later, and they performed the same surgery again, but it didn’t help. For the next several months, I continued to suffer. I was a full-time college student in a traveling choral ensemble. I didn’t tell anyone what was going on. I tried to hide it as much as I could because I didn’t want pity or to be treated any different, but it was exhausting. I was pretty thin because I would skip meals (because of the pain) and I remember a girl came up to me and said she was going to skip dinner because she wanted to look like me. It was really hard. They didn’t get it. I continued to see more doctors who did more tests and they all came back normal. So many doctors said it was all in my head or I was anorexic. I finally just went back to my primary care doctor who thought it might be a vascular issue since we had exhausted all other possibilities. So he referred me to a vascular doctor. This was a year and a half after the pain had started. When I saw the vascular doctor, I had done my own research and suggested I might have compression of my celiac artery. She said, ‘That’s pretty rare. There’s no way you have that.’ But I insisted she do a special ultrasound to look at the artery. During the ultrasound, multiple techs came in because they saw something wasn’t right. I was so relieved. Of course, I didn’t want anything to be wrong, but I was in so much pain and I knew something wasn’t right.
After suffering for so long, I had an answer and I was ecstatic. Every single doctor who said it was all in my head was wrong. A week later, I had an angiogram to confirm the compression and the doctor came out and said, ‘You have median arcuate ligament syndrome (MALS) and your life is never going to be the same.’ After what he said, I was kind of confused because I thought we would just get it fixed, and then everything would be fine. But he was right. I had open surgery the next week. I walked into the hospital confident and hoped my pain would be gone so I could finally be a normal 21-year-old. They took me back to a small room and my parents weren’t allowed in. Everything happened so fast. The nurse asked me questions like, ‘Do you understand the mortality rate?’ and ‘Do you give us permission to perform life-saving measures if something goes wrong?’ Suddenly things started to become real, but I wasn’t scared because I knew God was watching over me. One nurse started an IV in my right arm and another nurse started one in my left arm. They also put an IV in the artery in my wrist where my pulse is, which was incredibly painful. They stitched the IV into my skin. All of this was happening at the same time. While this was going on, they started rubbing a scary orange liquid (iodine antiseptic) onto my abdomen, and of a sudden, they started shoving these four giant needles into my belly. I screamed. I think I blacked out from the pain.
No one told me what was going on. They were just poking and prodding me like I wasn’t even human. The next thing I remember was waking up from surgery. The incision was 6-inches long and I spent five days in the hospital. During surgery, they cut the median arcuate ligament, which was causing the compression, and put a bovine patch on my celiac artery because it was so damaged. The doctor said, ‘No wonder she was in so much pain.’ I had my first sip of water after waking up and my pain was gone. It was 100% gone. I was so happy because I could finally be normal. I could go back to college and all of this would be over. But then a few months later, the pain returned. Everything I ate and everything I drank hurt. It was the same horrible pain. Around this time, I also started having left flank pain. I went back to my surgeon and he told me, ‘Well, I fixed the artery, so you’re fine.’ So I had to start all over again. I went to the Mayo Clinic in Rochester, where they told me MALS isn’t real. I went to the Cleveland Clinic where they told me to try eating seafood and take an antidepressant. I even tried acupuncture and saw a chiropractor. I explained my weight loss to the chiropractor and my situation, and he said, ‘Well, were you overweight before all of this?’ The answer was no. I was not even close, but it was not even relevant. No one cared and no one was listening to me. I started losing even more weight. One time I even went three days without eating. Then a new symptom arose. I started getting nausea attacks. It’s the feeling right when you are about to throw up but you never do. It’s so bad I have to stop whatever I’m doing and just lay down. It happened randomly and there was nothing I could do but just close my eyes and wait for it to be over. In the middle of all of this, I was able to graduate college and I even got married. No one was forcing me to finish college, but it was my goal. I didn’t want to give up just because life wasn’t easy. I also didn’t want to wait to get married. There is always going to be something going on. There will never be the perfect time to do something. I wanted to marry my best friend and so I did. We met in high school and went to college together. He’s been through everything with me. He is the one keeping me sane I think. He’s so funny and always makes me laugh. I honestly think he needs his own comedy show. I didn’t want life to stop just because I was suffering, but it was getting really difficult to function. I saw another doctor who thought the problem might just be the nerves surrounding the artery, so he said I needed another open surgery to address those since they are so deep. I had the surgery, and when I woke up I felt everything. They did not give me any pain medicine. They had me on IV lidocaine and it was making my vision blurry. I was in an immense amount of pain and couldn’t see. I told them about the pain and they offered Tylenol. I had just went through a major surgery and they offered me Tylenol. The worst part was I drank a sip of water and the pain was still there. My mom and the doctors were watching me, and when the pain hit I thought, ‘No, please. This cannot be real. I couldn’t have gone through all this again just for nothing.’ So I pretended it was gone. I pretended for about a month and I just couldn’t do it anymore. I had to face the reality; the surgery did not work and we have to start over again. Things got even worse after. I started losing more weight. I had an MRI done of my arteries and veins, which suggested I had nutcracker syndrome but was ‘highly unlikely,’ according to the radiologist. Nutcracker syndrome is the compression of the left renal vein and causes left flank pain, pain after eating, and nausea. It explained all of my symptoms, but no one thought it could be it. I started losing even more weight and couldn’t keep myself hydrated, so I got a central line put in my chest. I started getting IV fluids twice a week, and had visits with my gastro doctor regularly. Every time she saw me she said, ‘You look great! I guess you’re doing well. See you in a few months.’ I may have looked great, but I lost 30 pounds because I couldn’t eat. My kidney function was starting to deteriorate because of the compression, but according to her, I was fine. Through online support groups, I found a doctor who understood all of the compression syndromes. He was the most knowledgeable doctor I had ever seen. I had a virtual appointment with him and he said, ‘We’re in this together.’ He was compassionate and actually listened to me. He was certain he could help me, like he’d helped so many others. I was elated. He said his office would call within the next couple of weeks to set up a renal block and an angiogram. But exactly a week later, he called and said he was fired. The reason was because he wanted the best care for his patients, which sometimes meant referring them to different doctors. The hospital didn’t like it and fired him. I cried so hard after I heard the news. I was full of hope and it was all just gone within seconds. It was truly devastating.
If it wasn’t for my family, I don’t think I would be here today. I think I gave up a few years ago, but thankfully they didn’t. It’s honestly a miracle I am still able to function. Usually, I wake up really nauseous, and my kidney pain flares throughout the day. Sometimes it’s so severe it will cause me to collapse. I only eat one meal a day, and it’s usually around 4 p.m. so I don’t suffer from pain all day. Some days are especially hard because I am so hungry, have a fridge full of food, but I can’t eat it. When I do eat, the pain is so bad I’m usually curled up in fetal position for the rest of the night. Then I wake up and I do it all over again. My days are really hard, but I think we’re getting close to getting some answers.
If you’re going through chronic illness, find a community of people who are going through the same thing. I am so lucky to have a family who fights for me and cares so much. If you don’t have a family like mine, I will be your family. Reach out to me. Find people through social media. I have found so many people on Instagram and Facebook who have compression syndromes. There are also a lot of groups on Facebook for the different compression syndromes and other chronic illnesses. The most important thing is to not give up. Don’t take no for an answer. There is always hope. I know it doesn’t always feel like it. There are times where I break down and I can’t stop crying, but then I remember all of the good in my life. There is always good in the middle of the bad. I used to think God never gives us more than we can handle, but it is not true. The reason we go through all these bad things is so we cling to Him. When I’m having a hard mental day, I just remember God created the universe and He created me. He holds my life in His hands and nothing is more comforting. I know one day this will all make sense. It is really hard now, but one day it will get better. One day I’ll be able to eat breakfast and lunch again. One day I’ll be able to go out to eat with friends. One day I’ll be able to wake up early and go for a run. One day I’ll be able to sing again and not have to worry about how much it will hurt my kidney. One day I won’t have to wonder, ‘Is this the day I pass out from not eating?’ One day I won’t have to go to bed hungry. This day is coming, and it’s going to be the best day ever. Life is unpredictable and sometimes scary, but I am alive. So I will keep singing, dancing, and praising.”