How old was Jordan when he had his first pancreatitis attack? What were the symptoms? What did you think it was initially?
Jordan was diagnosed at the age of three. His symptoms started quite some time before his official diagnosis, but I didn’t realize that until after the fact. From an infant Jordan was diagnosed with severe acid reflux. He was never able to fully keep his formula down. He would always vomit/spit up his milk. He always had diarrhea, or he was constipated. He would cry at times, but it wasn’t anything serious until he turned three. He got extremely sick with vomiting, fever, diarrhea, and uncontrollable crying. We took him to the ER and he was sent home with what they called a viral infection. They told us to let it run its course and he should be better in a few days. A few days later he was much worse. This time his little body was basically lifeless and still presenting all the same symptoms but much worse. We rushed him to a different ER. We spent 12 hours in the ER while they were trying to figure out what was wrong with him. By the looks of my child, I wasn’t sure he was going to make it out of the hospital alive.
It took the ER department 12 hours to officially diagnose him with pancreatitis. It was confirmed for the second time once he arrived at Vanderbilt Children’s Hospital via ambulance. Thankfully, Jordan had a wonderful pediatrician who was willing to help us in any way possible. She sent us to Mayo Clinic for more testing. That is where he was officially diagnosed with SPINK1 and PRSS1 genetic mutations.
At that time, I was 21 years old and remember thinking to myself when they said it was pancreatitis that I didn’t even know what that was and had to research the purpose of the pancreas.
How often were the hospital stays?
After his first attack we would be admitted to the hospital every four to six weeks for a minimum of seven days at a time and sometimes longer. This continued for the next nine years.
How did you explain pancreatitis to him?
I was always brutally honest with him. I didn’t sugarcoat anything, and he was always aware of how serious it could be and how he must always take care of himself and do what the doctors told him he needed to do or he was going to make life worse for himself.
What did you have to do differently to work around his pancreatitis? What’s a typical day for him in terms of food?
I was fortunate to have jobs throughout the years that allowed me to work remotely whenever Jordan was sick. I had to change eating habits for the entire family in order to help keep Jordan on track. I began to cook only low-fat meals. We rarely ever got to eat out and would have to take his own meals if we visited somewhere other than home.
Jordan always had a really good group of friends, so I don’t think his social life was strained. His friends didn’t understand pancreatitis until it was explained to them. It was always hard because if Jordan wasn’t sick he looked like a normal human being. It was sometimes difficult to explain how he could look normal on the outside but be so sick on the inside to the younger children. It wasn’t until they got older that they could really understand what Jordan had faced his whole life. Jordan’s health was a major distraction throughout his whole K-12 schooldays. He missed so much school that he would fall behind and his grades would drop. He would have to do summer school to catch up before going into the next year. This was year after year. I learned the older he got the more stress this would put him under and that in itself would put him into an attack. Finally, he finished high school via online and homeschool.
Stress and dehydration were the two key things that would ultimately put him into an attack every time. And of course, certain foods. One for Jordan was bacon. If he had bacon, we might as well get in the car and drive to the hospital because a flare was coming.
What were your actions/emotions after Jordan’s diagnosis?
I was extremely concerned for Jordan’s wellbeing. I had no idea what and how this was happening. I was in survival mode and began researching everything I possibly could. Back then there wasn’t a lot of knowledge or help available. Jordan was seen at Vanderbilt Childrens, Atlanta Childrens, St. Louis Childrens, Mayo Clinic and Morristown Hospital. I did everything in my power to find him the help he needed. After being admitted to Vanderbilt for two weeks during one flare up and not getting better, but only declining daily while the doctors there just wanted to blame everything on the pancreas, I knew there was more going on. So, I removed Jordan from the hospital with his PICC line and feeding tube in tow and rushed him to a GI doctor in East Tennessee. That doctor immediately did an ERCP with sphincterotomy and while he was in there realized Jordan was so sick because his gallbladder was destroyed. He went straight from ERCP to gallbladder removal surgery. Once he recovered from both of those procedures Jordan went four years without a hospital stay. After those four years it came back with a vengeance. At that point I began to research TP-IAT and Jordan was approved for the surgery.
However, at that time Jordan was around 12 years old and as his mother I decided that just wasn’t the right time. In the meantime, we moved across the country from Tennessee to Colorado so Jordan would have better healthcare and doctors. He had the best care of his life in Colorado until his GI doctor said the only thing I can do for you is ERCP with stent placements and they were beginning to happen every three to four weeks. The GI recommended TP-IAT and that’s when we knew it was time.
What was his recovery like post TPIAT?
Jordan’s recovery was nothing short of miraculous. His surgery was on February 25, 2022. He was released from the hospital to our Airbnb on March 4, 2022. Jordan was released seven days post-op. By March 9, 2022 Jordan was clamping to see if his body would be able to handle liquids and then on to solid foods. His transition back to being able to drink and eat was excellent. He never had any setbacks through the entire process. Jordan was released from his surgeon on March 23, 2022. We left for home two days before his one month post- op. We basically went home in half the time that we were originally told. We were told we would be there eight weeks and left in four weeks. Jordan’s recovery continues to be great. Jordan’s surgery was done at University of Minnesota by Dr. Gregory Beilman.
What have been some of the challenges since his surgery? How is he managing his diabetes?
Fortunately, Jordan hasn’t really had any medical challenges since surgery. If we want to call it a challenge, it was extremely hard for him to learn to live his life pain-free. For a while he would say he was just waiting for the next attack to happen. That went away after a few months. He has recently realized exactly how sick he was prior to TPIAT and that was something he couldn’t fully comprehend for a while as well. He is also handling that better too.
Managing his diabetes has been going pretty well. In the beginning Jordan would continue to watch his food intake because of carbs, etc but his endocrinologist finally told him he needs to eat what he wants and do his carb correction for insulin and once he started doing that everything has been great. Also, after receiving the insulin pump and CGM that made his diabetes much more manageable.
Has his diet changed much since his surgery?
Before surgery Jordan couldn’t eat a lot and didn’t eat a lot. After surgery Jordan can eat as much as he wants and whatever he wants.
Other than being pain-free, how has his life changed since he’s had the TPIAT and how is he doing today?
Jordan’s life has changed drastically since surgery. Jordan has never known what a normal life is. He has been sick since he was three years old. This is the first year he has ever been completely well. He is off all medication that he previously took for acid reflux, IBS, etc. His only medications today are his enzymes and insulin.
Jordan is a father to his two-year-old daughter, Kambri. Before surgery Jordan wasn’t able to work and a lot of time he wasn’t able to help care for his daughter as much as he would have liked to. Today, he is able to run and play with her as much as her little heart desires. We are currently awaiting hereditary CP genetic testing results for Kambri.
Jordan is EXCELLING and living a life he has never known at the age of 25 years old. He is pain free for the first time in his life. He is blessed to be where he is today.
What was life like before his diagnosis?
Honestly, there wasn’t life before diagnosis for Jordan. He was just a little guy when diagnosed at three years old so he doesn’t remember anything but being sick his entire life.
Any illness will take a toll on you mentally and physically. For kids that are living with a rare disease, what piece(s) of advice would you tell them to help them get through this? What would you tell patients and other caregivers?
For all the kids living with this horrific disease I would tell them to be strong! Keep their head up.
Caregivers: Do the research to help find what helps them the most. Everyone is different and different things work for different people so never stop looking for what helps them! Always listen to their doctor and follow what they tell you to do.
I would also tell patients to remove all the negative people from their lives. The people who can’t understand and sympathize with them over their illness, those are the people you don’t need in your life. For the caregivers, always believe what your person tells you. Don’t downplay their sickness. Be their voice. Be their advocate. Stand up for them when they can’t stand up for themselves. They need strong caregivers. They can’t do this alone. Be kind!
For you personally, what has helped you the most during this?
Research and knowledge. Having the ability to research and learn so much these days has helped me learn every single thing I need to know to care for my child who suffered with hereditary CP for 24 years. I was able to find the best overall care for him by researching. Also, being able to connect with others on social media platforms has been a blessing in the more recent days.