Risha Shukla Risha’s Story

First post: Sep 23, 2011 Latest post: Sep 6, 2021
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Donations: https://cota.donorpages.com/PatientOnlineDonation/COTAforRishaS/

Please note a "Childrens Organ Transplant Association" (COTA) account has been set up to help with transplant related medical expenses. The link is where tax deductible donations can be made.

Any “tributes” made on this site goes to this caring bridge website for their maintenance to keep this amazing site working and does not go to the patient.

Background Story: 1999-2014
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, & I’m still fighting my way to a life of pain-free normalcy. I’m now an adult – & 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 & tests.

2004: At age 7, I underwent a 12 hour surgery: an auto islet cell transplant, partial pancreatectomy, a cholecystectomy (gall bladder removed), 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 known as 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 & awards for the next 7 years. I was also a speaker for Make A Wish, a guest blogger for Teen Huffington Post on behalf of Starlight Foundation. I met many interesting people & had some amazing opportunities in life during this time. I also was a GATE/Honors student & did really well in school.

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 (Minneapolis specializes in this type of surgery). This was after being hospitalized for four months (Sept. - Dec. 2011) with intense pain, whereby I suffered 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 (my skin looks like I have multiple train tracks everywhere!). My pancreas & duodenum were removed along with a roux-en-y surgery. 

2012: If all that wasn’t enough, during my recovery in 2012, I was newly diagnosed with another rare disease in children (completely unrelated to my other diagnoses): 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 the post-transplant pancreatectomy complications, abdominal pain, diabetes, POTS, arthritis, & Secondary Adrenal Disease. I was in & out of the hospital with several procedures for the next six months before I was diagnosed with a stricture in the small bowels, a complication of the December surgery.

August 2012: Due to continual post-surgical transplant complications, I had my 3rd surgery at Keck-USC Hospital to remove a 20 cm small bowel stricture. Along with major GI surgery, my surgeon told my parents that my spleen was enlarged (leading to varices bleeding into my stomach), & needed to be removed. We were faced with an extremely difficult decision: keep or remove my spleen, & all the risks associated with either decision. Ultimately, my spleen was removed (splenectomy) along with celiac ganglionectomy & reversal of the roux-en-Y surgery from December 2011, hoping that it would help me feel better. I left Keck-USC Hospital in Sept. 2012, but returned back to Keck-USC & multiple ER visits over the next two months, due to unknown pain & nausea.

Nov - Dec. 2012: With non-stop pain & nausea, I could no longer drive to Keck-USC, so I ended up hospitalized for 3 weeks at Hoag Irvine. The only blessing was that I was able to spend Christmas at home with my family. The doctors there found that I had beazor 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.

2013: I still had continual ER visits from January thru February, almost weekly, due to pain, nausea, fever. At that time, yet another curve ball was thrown at me:  My doctor told me that a brain MRI done earlier showed I have a pituitary microadenoma - basically a small tumorous growth on my pituitary gland, below my brain. If it gets bigger, it can lead to severe headaches &; other brain complications, & would need to be removed. My doctor said it's unrelated to all my other GI problems, & that I'll need to take weekly meds for the rest of my life, to keep it from getting worse & growing bigger. I tried some physical therapy, bio-feedback, acupuncture, & other alternative treatments, hoping for the pain to get better. Nothing worked. I got worse.

March, 2013: Admitted to UCI Douglas Hospital on March 5 for pain & bile reflux due to my surgically altered anatomy. I was here for 2 months, with one month in ICU - intubated, on a ventilator, under deep sedation. The team was amazing, but I was a challenge to them, a mystery. They had to juggle controlling my pain, along with my continual bile reflux, dysmotility, diabetes, adenoma. I had several endoscopies here, as they tried to drain my lower stomach of bile. They also put a feeding tube in my stomach along with PICC line in my arm, with a direct line to my heart, to help me gain weight.  Surgery was the next step, possibly - UCI transferred me to UCSF I induced coma, Ras 4, for higher level of specialized critical care for surgery.

May, 2013: Transported via Air Ambulance, & admitted to UCSF Benioff Children's Hospital. I stayed in ICU for a month. I woke up from my coma after a week. I had developed short term amnesia & had forgotten how to write. My finals in Statistics were in 2 weeks & so was the high school exit exam. I gave my Statistic exam after 2 days from waking up from coma. Since I had forgotten how to write, the hospital teacher proctored my exam while I was hooked up to all these machines and would verbally answer the test very stressed, but I passed with an A! Because of these medical issues, I was transferred to an online school so that I could study from the hospital. Pacific Coast High school was the best thing that happened to me. The teachers, the staff & the principal were so caring & understanding.

June-July 2013: We continued pursuing alternative treatment, & I was able to stay out of the hospital for the first time in a very long time: 2 months! I was so excited to get together with my high school friends, who had been there for me during this very difficult & challenging journey.

Aug 2013: Back in ER for severe headaches, nausea & abdominal pain. The pain after eating still continued after all these surgeries & treatments, causing 14 lbs weight loss in a month. A week later, I was admitted back at UCI for the same issue & sent back home in 2 days with more meds. No answers, once again. I was looking forward to going back to my Northwood school, spending the senior year with my friends, & taking college classes at the same time. I was unsure if that would happen anymore, since things got worse again. I desperately hoped to go to school, I missed it so much. Unfortunately, I was unable to. I continued school with PCHS, taking online classes & going for academic counseling. This is when I was told about a test called the CHSPE -- a test that, if passed, allowed a student to earn the equivalent of a high school diploma. This would avoid the hoops required to jump through to earn a certain units in certain subjects, & still allow one to apply to colleges. Its meant for special circumstances like mine, or kids who were extremely smart & advanced.

2014: A year of excitement! I passed the CHEPE, took my SAT & ACT tests as well. This was my senior year, & everyone would be graduating & celebrating. I wanted to be part of that too. After much back & forth with my original school, Northwood, I was finally allowed to have a special schedule, where I started late in the day & only took two classes I needed to complete my grad reqs. For the last semester of high school, I tried my best to get to school each day. I got to be with my friends & peers again, & participate in the senior activities. Applying to college also became a question. Many teachers, counselors, & even friends told my parents or I directly that I shouldn't even bother applying. They suggested I attend community college first, saying I wouldn't be accepted to any colleges to begin with, & even if I did, I would not succeed. It would be a huge waste of money. I wanted to prove everyone wrong,& I did. I applied to almost every UC, as well as private schools in SoCal, plus Stanford & Yale. I was accepted everywhere except Stanford. This was huge for me, & I worked hard. Eventually I fell in love with UCLA: not too close, not too far, & a big, bustling city. I started in October 2014, pursing a pre-med track with a major in Molecular, Cell, & Developmental Biology. 

2014 to now: In & out of college, hospital, another major bowel perforation, incision openings....

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