My name is Julie Bernal and I am here to share my story with hopes to raise awareness about my illnesses and to keep people informed about my health. I know every case is different, but I hope sharing my story may help others feel less alone as they may also face common heath issues or battles.
Over the years I have been diagnosed with Recurrent Acute Pancreatitis and Chronic Pancreatitis (CP), Sphincter of Oddi Dysfunction (SOD), Hypoglycemia and diabetes, and a few rare diseases called Periodic Paralysis (myopathy/neuromuscular disease affecting muscles and the metabolic system) and Ehlers-Danlos Syndrome (EDS) Type III/Hypermobility (a connective tissue disorder affecting collagen, joints, muscles, skin, blood vessels and many organ systems). I have secondary disorders caused from my EDS including Dysautonomia (Autonomic Dysfunction), which also caused Inappropriate Sinus Tachycardia, Atrial Ectopic Tachycardia, Postural Orthostatic Tachycardia Syndrome (POTS), Orthostatic Hypotension and Gastroparesis (Delayed Gastric Emptying).
2006 was the start of what would later turn into multiple surgeries/procedures, hospitalizations, ER visits and recoveries. But it wasn’t really until 2010, when I realized my health was poor and my condition was chronic and serious. Before, I had no idea and would have never of guessed I would be diagnosed with the many conditions I have now. Due to my connective tissue disorder, I also have a power port to help with hydration and IV treatment, a permanent cardiac pacemaker (placed after having a cardiac ablation to help with heart arrhythmias and low blood pressure) and deal with frequent and many joint hyperextensions and partial dislocations. I feel I am continuously learning and discovering more about my health as the years go on, and I have found keeping a blog has been a great way for me to cope and share about my current health issues, and not just my pancreas issues…but all health issues.
It is now believed my first pancreatic attack happened when I was child – when I first had issues with digestion and pain from eating fatty meats and food. Age five I learned how to adjust my diet. Then at 23 years old, I had an attack which lasted a month. I had no idea, but it was the start of my pancreas and sphincter of oddi problems. After having my gallbladder removed, biliary and pancreatic sphincterotomies, biliary balloon dilatation, ERCP three times, EUS twice and an MRCP; my sphincter of oddi dysfunction proved to be stable but proof of chronic pancreatitis was discovered. The results came back as being abnormal showing slowed pancreatic function, three times the normal size of pancreatic branches, an enlarged splenic vein, spots seen in the pancreas and a narrow duct within the pancreas which was causing the pancreas to digest itself. I was advised my last option was to have my pancreas and spleen removed along with a transplant. I knew doing nothing and leaving my pancreas and spleen as they were could have resulted in a deadly rupture and would have only been a matter of time in my case, plus I was living in such severe pain – I knew I had to do something. I knew the surgery was a big one (14 or more hours on the table) and I knew it came with risks, BUT I knew I wanted to keep living and I wanted to fight for my life. I felt very lucky to even have the option of surgery, where some may not be candidates or eligible. So I knew what was right for me.
So May 19, 2011, I underwent the major, life-saving surgery and transplant called total pancreatectomy with an auto-islet transplant (TP/AIT). It involved removing my entire pancreas and spleen, and transplanting my own pancreas islet cells. (And though many believe you can’t live without your pancreas, you can but there only a handful of facilities capable and qualified for doing this complicated and risky surgery.) They also removed the duodenum (the first section of the small intestine where the sphincter of Oddi is located), along with the pancreas bile ducts. A Roux-en-Y was performed and a Gastrostomy-Jejunostomy feeding tube (GJ-tube) was placed. My pancreas was taken to a lab where my islet cells were separated and harvested from my pancreas and then they were transplanted into my liver. This is done with hopes that the liver will generate insulin. I spent 12 days in the hospital recovering and three more weeks in an apartment (out of state) which was close to the hospital. I relied on my husband to care for me for those weeks. To read more on my recovery, read my blog post here.
Before getting my pancreas removed I lived with severe daily abdominal pain, nausea, vomiting of bile, fatigue, swelling in my abdomen, severe pain from eating, difficulty digesting food, weight loss, bowel issues and life was very hard. My diet had become very limited and many days I couldn’t even keep liquids down. The pain and inflammation was so bad – so bad I required to spend many days stuck bedridden and too weak to stand. Though most would say I looked healthy, I was very ill with a disease that caused permanent damage to my pancreas. It felt like I was being beaten in my right rib and upper abdomen, and I was left feeling run down, weak and pale. I was living one day at a time just trying to survive. To learn more about my symptoms and history before having my TP/AIT, watch my YouTube video here.
As far as living without my pancreas, I will need to be on pancreatic enzyme supplements whenever I eat, for the rest of my life to make up for not having a pancreas. And living without a spleen, my body will have a hard time fighting off infection. So any infection can be very serious and will require antibiotics right away. My transplant worked well and I was able to come off insulin three months post TP/AIT. I still have to check my blood sugar levels about four-eight times a day due to some low blood sugars. My body has had to learn to make adjustments to my new normal. And though I am not perfect and still have other unrelated health issues, I truly believe my total pancreatectomy with an auto-islet transplant was a success and I don’t think I would still be here if I didn’t have it done. I feel blessed to be alive! And I’m so thankful for the wonderful doctors, nurses and staff at the University of Minnesota Medical Center of Fairview for everything they have done for me.
If you or a loved one suffers from acute/chronic pancreatitis or sphincter of Oddi dysfunction, visit my support group page to find many great support groups. Let’s stand together and try to raise awareness of these horrible and disabling diseases. Together we can make it through this. To read more and to stay up to date with my current health and other medical conditions, check out my blog. Thanks for taking time to hear my story.