Finding Miracles When Dealing with Chronic Illness
My name is Kristy Poindexter. I'm 41 years old and have been dealing with chronic illness for most of my life. I’m also an HPN (Home Parenteral Nutrition) advocate and consumer for 33 years.
My story is a rather long and complex one. I was born a beautiful, healthy baby. Other than the typical colds, flus, and ear infections, I continued to grow and have a happy childhood. It wasn’t until I was eight years old that I first became ill. For many months they couldn’t figure out what was wrong with me. I would vomit every time I ate. I couldn’t hold anything down, which led to malnutrition, fatigue, dizziness, and passing out. I laid in the hospital for months while they ran test after test after test. The time finally came when the pediatricians told my parents that they thought I was anorexic and that they were going to send me to Stanford Children's Hospital for treatment on their adolescent psych unit. I was transferred to the Children's hospital right after Christmas in 1987. The hospital was 90 minutes away from our home, which made it quite a commute for my parents, family, and friends.
Anorexia and a surprising diagnosis: A turn of events
I spent a couple more months being treated for anorexia, but I was also evaluated for physical/sexual abuse and other types of psychological issues. Every night a nurse would put a feeding tube down my nose to give me nourishment (and force me to eat). Every morning they would take the tube out. It was all more than my little fragile body could handle. One night the nurse was having such difficulty getting the tube down. She kept telling my mom, “It’s like I’m hitting a brick wall!” The next day I was scheduled for a barium enema to look at my bowel. While I was having the study, the radiologist asked me to take a sip of the barium and right there shock and amazement came over the radiologists face. At that moment I was diagnosed with Achalasia, a disease of the esophagus in which it pretty much stops working. The sphincter muscle before the stomach had frozen shut and wasn’t allowing food to pass. Months of old food had been sitting in my esophagus, which had been causing me pain and vomiting when I ate. This is the reason why the nurse who was putting the tube down my nose was hitting a literal “brick wall.” A lot changed from that moment on. I wasn’t sent back to the psych unit. Instead, I was sent to the adult hospital where they had a pediatric unit for more acute illnesses as well as a pediatric ICU.
Catheters and pre-op
My first Broviac catheter was placed in a treatment room under sedation. That was when the doctors decided to start me on HPN, IV nutrition through a catheter to beef me up. I needed to put weight on so that I could undergo major surgery to repair the sphincter muscle in the esophagus. I soon underwent my first major surgery that took 10 hours. I woke up in the ICU with countless tubes and pain. I recovered rather quickly and was able to start taking small bites of food. The doctors decided they wanted to do a full barium study that would look at my GI tract to make sure that things were working properly. I was diagnosed with Crohn's disease shortly after. Crohn’s is an inflammatory bowel disease that affects the GI tract. Treatment for me at that time was high doses of IV steroids, bowel rest, and HPN. This was the beginning of 1988 and HPN hadn’t been around long, nor were there many children on it. A new way of life had begun. My parents were taught how to take care of my line, all of my medications, how to prep the counter for the HPN, priming the tubing, and hooking me up. My parents were told I wouldn’t live long on HPN. They took me home and we all adapted! I became a frequent flyer at the hospital, spending most of my childhood and early teen years as an inpatient.
A couple of years had passed, and things weren’t looking good. Esophageal dilations were being done every couple of weeks to keep the esophagus open. The IV steroids were causing yeast infections in my esophagus which made the damage far greater than the doctors ever imagined. My parents decided it was time for a second opinion with a specialist at UCLA. After some testing, it was concluded that I didn’t have Crohn's disease and never would. Now that I didn’t have Crohn’s Disease, the steroids were stopped, and a new plan of action was determined. This new plan would be major surgery on my esophagus. The surgeons would go in and remove the lower portion of my esophagus and connect my stomach to the esophagus in the middle of my chest. This surgery is called an Esophageal Pull-Through and had never been done on a child in the U.S. before. Surgeons around the country who had performed the surgery on adult patients were contacted. There were a lot of discussions between my parents and physicians.
The surgery and its aftermath
The day came for my big surgery. I was 11 years old; it was the day the Gulf War started, and the surgery took 12 hours. They removed the lower portion of my esophagus and pulled my stomach up into my chest cavity attaching it back to the esophagus. A lot happened after that surgery to write about in a blog story. While this surgery kept me alive, I have been unable to eat food and dependent upon HPN/tube feeds. I was able to eat little bites after I healed from surgery, but soon started having other issues like gallstones and intestinal pain. Eating became more difficult over time because the esophagus narrowed making food and even liquid impossible to pass. If I do accidentally swallow a bite of something it feels like a golf ball gets stuck in my chest. During my teen years, I was getting fed through a J tube, which is a tube that goes through the jejunum of the small intestine. I was healthier during the time from 1994 -1998 and when the time came, I integrated into high school. was able to return to school full time. I caught up through independent study and when the time came, I integrated into the high school. I chose this route because I saw an opportunity to socialize, but I also wanted to enjoy senior activities and participate in the graduation ceremony. When I look back on those years, they were some of the healthiest years of my life.
Piecing it together
I wound up getting very ill the summer after graduation. I was admitted to the hospital with 104 fever. Tests were run, but nothing significant was showing and I was getting better with antibiotics. After the antibiotics finished, I started running a fever again. This time the surgeons were called in and discovered I had an abscess in my small bowel. The surgeon was new to my case, but he was also a specialist. He figured out that I had diverticulitis in my small bowel which had developed over the years of me being healthy. I had my first small bowel resection in the summer of 1998. I healed fast and was back on my J tube feeds. I started school at the local junior college, but during the semester, I continued to have belly pain. In the Fall of 1999, I wound up back in the hospital with micro-perforations in the bowel. It was then that I started back on HPN to give my bowel a rest so that it could heal. It was also during this time that the surgeon started putting two and two together to figure out what was going on inside my gut. Why did I develop small bowel diverticula at such a young age? The surgeon figured out that my parasympathetic system wasn’t working correctly because of my vagus nerve being cut in both of the esophagus surgeries. Due to the vagus nerve being cut, the entire parasympathetic system has been affected, which means my entire GI tract (motility) is damaged. I have been on HPN for almost 33 years, all because of the original esophageal issues, which have also led to intestinal failure. Since the surgery in 1991, I have had five small bowel resections, my gallbladder and appendix removed along with hundreds ‘if not thousands” of procedures and tests. I have had over 70 bouts of acute pancreatitis, sinus issues (surgery), chronic anemia, multiple line sepsis, osteoporosis, bile duct stones, and a lot of other health-related issues. I have been on life support twice since 2013 and have coded over a dozen times. I don’t take life for granted...it’s way too precious to worry about silly little things.
Like I said, my journey has been long, scary, traumatic, but also inspirational to others. I look at the glass as half full and I always have big dreams. I obtained my AA in Psychology last year after 20 years of attending the local junior college. I would go to on-campus classes when my health was more stable and loved the ease of online courses when I didn’t have the energy to attend in person. For me, there is nothing like sitting in class and interacting with peers and the instructor. I have learned I’m a forever student who always enjoys learning. I also went to school for skincare and got my Esthetician license in the middle of it all. I have lived an amazing life and I owe it all to God! He has blessed me with the most amazing parents. They are my caregivers to this day and they have fought extremely hard battles to keep me alive. I have two siblings, a brother and sister both younger than myself who had to grow up with me always being in the hospital. Dad had to step in and be both mom and dad to them. Luckily, we all got through those trying times. My siblings are both married now, while I remain single and living with my folks. I have three nephews who have changed my life. They are like my very own children and make life worth living! I can’t wait to see the kind of men they become. I want to see them make mistakes, graduate from college, fall in love, get married, and become fathers.
Keeping the faith and moving forward
I’ve always had a lot of faith in God, but there was a time in my twenties when I was angry with him. I learned what I was feeling was normal and eventually, my relationship with him came back. I know he exists because I have seen and experienced way too many miracles for something greater not to be present. I’m not scared to talk about my journey with him. As most humans who are dealing with any kind of medical issue, we seek answers. Actually, I think most humans want to know our purpose of being here. While those answers may not always be available when you are seeking them, I strongly believe he leads us in the direction we need to go, he sends us help when we need it and always provides.
I could go on and tell you all kinds of stories, but I need to conclude at some point. I try to live my life one day at a time, sometimes one hour at a time. One of my favorite quotes to live by; The past is DEAD, the future is PSYCHOTIC, the present is where your HAPPINESS lies. Thank you for taking the time to read this. You can follow me on IG @kristylpoindexter!