Risha’s Story
Background Story
My name is Risha Shukla. I am a fighter. I have to be. Why? Because, as you’ll see, I fought many battles starting at age of 3, and I’m still fighting my way to a life of pain-free normalcy. I’m now an adult – and my life-long medical battles would overwhelm most other adults. Diagnosed with Idiopathic Chronic Pancreatitis at 3, I have been fighting this incredibly painful disease my whole life, along with putting up with an endless stream of doctors and tests.
2004
At age 7, I underwent a 12–hour surgery: an auto islet cell transplant, partial pancreatectomy, and a cholecystectomy (gall bladder removal), along with the surprisingly rare discovery of a micro–carcinoid tumor. Fortunately, this appendiceal tumor was removed. At 7, I found myself eventually brave enough to administer my own painful insulin shots, multiple times per day. Subsequent years brought on the diabetes management associated with a pancreatectomy, along with a syndrome where I suffer momentary black–outs when standing up: a little–known disease called Postural Orthostatic Tachycardia Syndrome (POTS).
Because of my experience, I started a non–profit organization with the help of my family, called The Kids Who Care Foundation, to cheer up hospitalized children globally. We also provided support to children with pancreatitis on our website. I received several recognitions and awards for the next seven years. I was also a speaker for Make–A–Wish and a guest blogger for Teen Huffington Post on behalf of Starlight Foundation.
2011
In December 2011, I underwent my second 12–hour surgery (total pancreatectomy with auto islet cell transplant) for the removal of a calcific pancreatic head mass, as well as additional intestinal surgery in Minneapolis. This was after being hospitalized for four months (Sept.–Dec. 2011) with intense pain, during which I went through seven surgical procedures to remove a large pancreatic duct stone. I was taking about 15–20 pills per day, as well as continuous insulin via a pump on my scarred stomach.
2012
During my recovery in 2012, I was newly diagnosed with another rare disease in children: Addison’s Disease (Secondary Adrenal Insufficiency), for which I now must take additional medication for the rest of my life. This disease can be critical if my meds are not continually administered. However, I try to stay positive, despite dealing with post–transplant pancreatectomy complications, abdominal pain, diabetes, POTS, arthritis, and Secondary Adrenal Disease.
Due to continual post–surgical transplant complications, I had my third surgery at Keck–USC Hospital to remove a 20 cm small bowel stricture. Ultimately, my spleen was removed (splenectomy) along with a celiac ganglionectomy and reversal of the roux–en–Y surgery from December 2011, hoping that it would help me feel better. I returned to Keck–USC and had multiple ER visits over the next two months due to unknown pain and nausea.
With non–stop pain and nausea, I ended up hospitalized for three weeks at Hoag Irvine. The doctors there found that I had a bezoar in my stomach due to the rerouting of my anatomy – a complication from the August surgery after the roux–en–Y was reversed. This was causing bile reflux. The only blessing was being home for Christmas with my family.
2013
I had continual ER visits due to pain, nausea, and fever. Then a brain MRI showed I have a pituitary microadenoma – a small tumorous growth on my pituitary gland. My doctor said it’s unrelated to all my other GI problems and that I’ll need to take weekly meds for the rest of my life. I tried alternative treatments hoping for the pain to get better. Nothing worked. I got worse.
I was admitted to UCI Douglas Hospital on March 5 for pain and bile reflux. I was there for two months, with one month in ICU – intubated, on a ventilator, under deep sedation. They had to juggle controlling my pain, diabetes, and adenoma. Surgery was the next step, so UCI transferred me to UCSF in an induced coma for a higher level of specialized critical care for surgery.
In May 2013, I was admitted to UCSF Benioff Children’s Hospital via Air Ambulance. I stayed in ICU for a month, waking up from my coma after a week. I had developed short–term amnesia and had forgotten how to write. My finals in Statistics were in two weeks. I took the exam two days after waking up from the coma, verbally answering the test while hooked up to machines. I passed with an A! Because of these medical issues, I transferred to Pacific Coast High School online school, which was incredibly supportive.
In June and July, we continued pursuing alternative treatment, and I was able to stay out of the hospital for the first time in a very long time: two months! I was so excited to get together with my high school friends, who had been there for me during this very difficult and challenging journey.
By August 2013, I was back in the ER for severe headaches, nausea, and abdominal pain. Things got worse again, causing me to continue school with PCHS online classes. This is when I was told about the CHSPE – a test that, if passed, allowed a student to earn the equivalent of a high school diploma. It’s meant for special circumstances like mine.
2014
A year of excitement! I passed the CHSPE and took my SAT and ACT tests. Despite counselors suggesting I shouldn’t bother applying to colleges, I applied to every UC and private school in SoCal – and was accepted everywhere except Stanford. I eventually fell in love with UCLA and started in October 2014, pursuing a pre–med track with a major in Molecular, Cell, and Developmental Biology.
In and out of college, hospital, another major bowel perforation, incision openings...
2015 to now
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2020–2025
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2026
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This is the full record of Risha’s courageous journey written in real time by my mom, dad, Risha and me, originally shared on her CaringBridge Journal dating back to 2011.