Kelsey: Diagnosed with Exocrine Pancreatic Insufficiency
My name is Kelsey! I'm from Sonoma County. This is my first photo at 6mnths old or younger when I was diagnosed with Biliary Atresia in '91. Biliary Atresia is a rare condition where the bile ducts are blocked. I was one of the first of many infants to be gifted a transplant at CPMC in San Francisco by Dr. Carlos Esquivel.
"I am now 30 and disabled with other complex health conditions including: Chronic Kidney Disease stage 2-3, insulin dependent diabetes, exocrine pancreatic insufficiency..."
At 16 years old the unimaginable happened and I achieved organ tolerance where I was able to stop taking all of my transplant medications. I'll never forget the awful liquid taste of Cyclosporine to this day and all the stickers I was given just for agreeing to take it as a kid!
At 28 years old I celebrated achieving tolerance by being part of medical study at UCSF along with others to help eliminate anti-rejection medication for future organ transplant patients.
Within 10-15yrs thanks to the ATTOL study, the hope is that anti-rejection medications for the liver and the kidney as well can be eliminated for all future patients!
I am now 30 and disabled with other complex health conditions including but not limited to: Chronic Kidney Disease stage 2-3, insulin dependent diabetes that isn't specified as type 1 or 2, and a rare disease thats not very well known called exocrine pancreatic insufficiency that I was diagnosed with at 28 years old. Suddenly during college I was eating a sandwich and horrible cramping and pain set in. My boyfriend at the time had no idea why I was leaned over in the car screaming my head off. I began to walk to class and returned to the car puking needing to go to the emergency room. Nobody could figure out what was wrong for the longest time and my doctor couldnt get me in to see a GI specialist for two months.
"I had hit 68lbs before UCSF diagnosed me with Exocrine Pancreatic Insufficiency"
I began to rapidly drop weight with excruciating pain, nausea and vomiting. I went to UCSF 3x in one month before a wonderful best friend of mine named Cat who happened to be a registered nurse, was able to figure out what was happening to me. She worked with the team members at UCSF demanding they do a stool test instead of sending me home again with only a laxative and pain meds.
I had hit 68lbs before UCSF diagnosed me with Exocrine Pancreatic Insufficiency. I was also born with a malrotated gut so the GI team preformed a pill cam test that showed my gut rapidly emptied in less than 20mins which didn't allow food to absorb. This was due to most of my intestine being removed during multiple 10+ surgeries and given an iliostomy. At one point I even had 2 stomas (thats another story).
There were many hypotheses of what EPI could have been including endometriosis of the gut...Nerve damage, adhesion pain. EPI is a serious, rare, and difficult to detect digestive problem that I believe needs more awareness. Other common diagnosis that can come with EPI is Failure To Thrive in Adult, malabsorbtion and malnutrition. When drastic weight loss happens its key for them to check vitamin K as it helps absorb our nutrients. Most people are able to digest their food but with EPI its not possible as it effects the pancreatic enzymes that would help us break down food. Currently I'm on 15 Creon pills a day with talk of potential TPN nutrition in my future but despite potential challenges and diagnosis, I am able to accomplish so much more.
"The genetic team has said my conditions make up less than 1% of the worlds population."
My favorite hobby is photography. I was in a local gallery at one point for painting but my passion is macrophotography. I’ve always found it to be meditating and intriguing to capture our smaller world up close and personal. As time goes on and more photos are taken, the genetic team has said my conditions make up less than 1% of the worlds population. It's been said it is possible I could even have my own syndrome that needs to be looked at more closely.
I feel blessed I've had such wonderful care when some doctors can easily give up on rare diseases. When the time comes I plan to donate my body to science to allow further medical studies to be conducted. My next study will be an MRI of my brain as it and other parts of my body are asymmetrical including my lungs, fingers, and legs. I am grateful for my liver still being in fantastic shape (Knock on wood) despite how my other organs are doing. I'm happy to still be here for this amazing journey! UCSF pain management as well as been a life saver that I am thankful for everyday.
Life is a gift and I try to give back to science and the medical field whenever I can. I continue to enjoy my days aside my yellow labrador Charley, friends and family. Transplant Strong, Sonoma County Strong also! 💚