Risha’s Medical Story
written by Risha
The very start...
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 Children's 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 Insufficiency 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 back to the 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 they 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 San Francisco’s UCSF Benioff Children’s Hospital via an Air Ambulance from a hospital in irvine. I stayed in their 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 to the hospital teacher while hooked up to machines. I passed with an A! Because of
these medical issues, I transferred to Pacific Coast High School (PCHS) online school, who were incredibly supportive of my medical restrictions.
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 took and passed the CHSPE, and took my SAT and ACT tests as well. This was my senior year, and everyone would be graduating and celebrating. I wanted to be part of that too. After much back and forth with my original school, Northwood, I was finally allowed to have a special schedule, where I started late in the day and only took the two classes I needed to complete my graduation requirements. For the last semester of high school, I tried my best to get to school each day. I got to be with my friends and peers again, and participate in the senior activities.
Applying to college also became a question. Many teachers, counselors, and even friends told my parents or I directly that I shouldn't even bother applying to college. They suggested I attend community college first, saying I wouldn't be accepted to any colleges to begin with, and even if I did, I would not succeed. It would be a huge waste of money. I wanted to prove everyone wrong, and I did. I applied to almost every UC, as well as private schools in SoCal, plus Harvard and Yale. I was accepted everywhere except Harvard. This was huge for me, and I worked hard. Eventually I fell in love with UCLA: not too close, not too far, and a big, bustling city. I started in October 2014, pursuing a pre-med track with a major in Molecular, Cell, and Developmental Biology.
2015 - 2018
Eventually, my arthritis and pain issues got in the way of my schooling. The combination of my immunosuppression injections, lack of a spleen, and living in a dorm with roommates culminated in getting severely sick anytime anyone around me had a simple cough or cold. Almost every month, I was in ICU with sepsis. All these absences took a toll on my grades - you can't make up a bio or chem lab easily - so, in 2016, my family and counselors decided it would be best that I take leave from UCLA. I was devastated, but ultimately I knew it was for the best.
I took summer programs at UCI, and community college classes at IVC. Eventually, I started school at Redlands, which has an advanced business program. The schedule was perfect - 4 hours, once a week, and each class was 8 weeks. I started in Jan 2018, confident that I would do well and earn my degree. On Valentine's day, I received an ugly surprise: a bowel perforation, which resulted in an emergency surgery. I was shocked by sudden and excruciating pain, like I had been hit by a train. By blood sugar dropped dangerously low, and I was hanging on to consciousness. My parents did everything they could to get my sugar back up, but for some mysterious reason, it kept dropping. I remember very little about that time.
They took me to ER, where my blood pressure kept dropping, too. Eventually, they did a scan that showed I had a one inch hole in my small bowels. Worried that we weren't at a university hospital, my mom contacted my previous surgeon from USC at 10pm. He informed us that there was a USC surgeon who was also on staff at Hoag, and that surgeon drove 2 hours to arrive at Hoag for my surgery at midnight. I remember when they were informing us of the entire situation, and he ended by saying "we have to operate now". I was amused. I may have laughed. There was no way I was going under the knife again - I had spent so much time and energy avoiding it. But he was not amused - this was life or death.
The next couple months were awful. In and out or hospitals and ER. They had to stop my immunosuppression due to the surgery, so my arthritis came back with a vengeance. I was admitted to UCLA for extreme pain and swelling in my knees - I had a nightmare someone was cutting my legs off, and I woke up screaming, only to realize the pain was real. The doctors had no solutions, and I staying in bedrest in the hospital.
At the same time, I was exhibiting symptoms of a neuroendocrine tumor, the same type that was previously removed from my appendix at the age of 7. My test results confirmed it, but the imaging could not. Such a slow growing and rare tumor was hard to detect. Eventually, I was started on chemotherapy to help the symptoms. I remembered being terrified of starting chemo, and not even being sure it would work. So when the next dose came around, I decided to do an experiment - I would see if I could manage without the chemo. My injection was due on July 4, and my best friend was leaving for Chicago to start her new job. We had planned a trip to LA, an overnight stay at a hotel, as our way of spending time together for the last time. That morning I woke up and threw up. I took my meds and tried to ignore how awful I felt. I packed bags to vomit in, just in case. Our train was late, and even on the train, I was in no mood to talk, worried that the more I opened my mouth, the more likely I was to throw up. I didn't say anything to my friend - I didn't want to ruin our trip.
Eventually, she noticed, and asked if I was okay. I admitted I wasn't feeling well, but I insisted we still go. We decided to get off at the next stop and Uber to LA. It would be faster and more comfortable for me. I got in the Uber and threw up (luckily, in my bag). I still insisted that we go, but my friend pointed out that there would be no point getting there and feeling like I missed out, or feeling guilty. Reluctantly, I agreed that we should head home - throwing up all the way. She stayed with me for a while, and I felt awful. I didn't miss another injection after that.
2019–2025
Rhea, Mom, and Dad taking over from here.
In the years that followed, Risha’s health became increasingly complex and unpredictable. What had already been a lifetime of medical challenges only intensified, as new complications emerged alongside the ones she had been bravely managing for years.
Her rheumatoid arthritis and chronic migraines worsened significantly, often leaving her in debilitating pain for days at a time. She became primarily bedridden, spending most of her days upstairs, only managing to come downstairs occasionally—usually for a quick trip to the fridge or kitchen to make herself a snack—before needing to return to rest. At the same time, her body struggled in new ways—episodes of severe dehydration led to acute kidney damage, and she experienced multiple bouts of diabetic ketoacidosis, each one frightening and life-threatening.
As her symptoms evolved, doctors identified signs of carcinoid syndrome, caused by elevated serotonin levels in her body. For years, Risha endured the effects of this—flushing, discomfort, and a constant sense that something wasn’t right—while continuing to search for answers. To help control these symptoms and suppress tumor activity, she began monthly Octreotide injections. They were known to be extremely painful, but she faced them the same way she faced everything else: with courage, even when it took everything in her.
By 2025, things took a more alarming turn. Risha began losing weight rapidly and without explanation. Despite every effort, her body continued to weaken, and she eventually dropped to just 84 pounds. It was devastating to witness. To keep her nourished, she was placed on total parenteral nutrition (TPN), receiving nutrients through a PICC line—a measure that underscored just how much her body was struggling.
In her final years, her care needs became even more constant. She was on nightly IV hydration, hooked up beside her bed, a quiet but powerful reflection of how hard her body was working just to keep going.
2026
In February, Risha was diagnosed with carcinoid heart disease, an extremely rare condition, after her cardiologist discovered she had severe tricuspid valve regurgitation in her right heart valve. In short, the valve that keeps blood flowing the right way through her heart wasn’t closing properly, so blood was leaking backward and making her heart work harder. Doctors think this happened because of a neuroendocrine tumor she had for about 15 years that was unable to be imaged. Over time, it had been releasing chemicals like serotonin into her bloodstream, which slowly damaged her heart.
The doctors wanted to reconnect in three months to talk about heart surgery and other options, but my parents, as always, didn’t want to wait. They submitted a request for Risha to be seen at the Mayo Clinic in Minnesota for faster answers and solutions and booked flights for the week of March 6.
But Risha was gone before that could happen. On February 22 in the afternoon, she experienced a PEA (pulseless electrical activity), a type of cardiac arrest. In short, it means the heart’s electrical system is still sending signals, but the heart isn’t pumping blood effectively. So even though the heart looks like it’s “active” on a monitor, there’s no pulse, and blood isn’t circulating.
Risha passed away in the ambulance, though the ER team kept going with compressions and defibrillation for another 32 minutes at the hospital.
We had dinner together the night before, which was getting more and more rare due to her extreme pain and fatigue. I got to tell her how unbelievably talented she was, and how important it was for her to keep writing, to tell her story, and write her book because it deserves to be told. I’m nowhere near the writer or talent she was, but I promise to help her story live on.
The below link is a full record of Risha’s courageous journey written in real time during hospital visits by my mom, dad, Risha and me, originally shared on her CaringBridge Journal dating back to 2011.
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