Kimberly’s Story of Courage

Categories: Success Stories

THE “ANGRY ORGAN”

An attack of Acute Necrotizing Pancreatitis due to Hypertriglyceridemia (Type I Hyperlipoproteinemia or Chylomicronemia)

In Honor of Dr. Singh, Dr. Mackary, Dr. Law, Christi Welsh, at Johns Hopkins University Hospital and Dr. Seoudi, Dr. Griffin, Dr. Machetti and the entire Trauma team at Inova Fairfax Hospital and each and every nurse that cared for me November 14th, 2013.

I woke up early in the morning with severe pain in my abdomen. It felt like a 300lb person was sitting on top of my stomach. I sat up in bed and jetted to the bathroom to puke almost 11 times, mostly gagging up bile. I was curling up into a fetal position in my bed holding my stomach when I decided to call my mother. By this time it was later in the morning just a little past when most people eat breakfast and are getting ready for work. I told my mom that my pain was the most excruciating pain I’ve ever felt in my life. One hour later I felt the pain getting deeper and I sat up again thinking I would run to the bathroom for another painful episode, but this time I sat up so fast and never made it to the bathroom. I had puked all over myself and it was seeping into my bed sheets. My mom has always been the over protective type but just like any other mother on earth, when her child gets sick she starts to demand visits to the doctors etc. At this point, I told her that I wanted to wait and to see if the pain would subside and I had thought maybe just maybe it was some weird cramping thing I had going on. She held her tongue and agreed. She told me that she was going to call every hour to check in on me as well.

So she continued to call for the next few hours or until about 2 o’clock. That’s when one of my good friends texted and wanted to see if I could meet for a rendez-vous at our local hot spot to enjoy our love for margaritas and cheesy dip. I texted her back that I may need her to take me to the ER instead because I threw up a lot this morning and that my stomach hurt so bad. Being the good friend that she is, she texted me back “Ok, I’m leaving the gym now to pick you up. There is no reason you should wait and it sounds like you may have appendicitis”! I thought about my morning and counted the number of times my mother had called since I told her of my pain, swallowed my hesitation and agreed. It was about 4 o’clock when my friend called to tell me she was outside of my condo building. She gathered my things into a little overnight bag and packed up my purse. She said to me ‘you never know if you’ll be there overnight or not so it’s good to be prepared’, then helped me down my condominium’s stairs and watched carefully as I bent over holding my stomach and into her car. We drove about 50 feet and I started to complain again about my stomach. As we drove over a speed bump, I complained even more. I walked through the ER doors and I thought I’ve never been this sick before that I forgot to put make- up on! Then the sharp pain shot up my back again and around to my abdomen. I was standing at the front desk counter as my friend came up behind me, she told the receptionist my name and for me to go sit down and just to give her the paperwork to fill out. She then walked toward the seat that I had saved for her and plummeted down next to me. She asked questions like ‘What is your social? What is your middle name’? I answered her questions as she filled in the overwhelming emergency room patient form. Ten minutes later my name was called out.

That was the middle of November. I was 29, active, ate well and overall a seemingly healthy female. Today is the middle of June and it has been a very, very long and overwhelming 8 1/2 months since my friend picked me up that one afternoon. I am writing this now, which is one day after my follow-up Esophagogastroduodenoscopy at Johns Hopkins. This procedure confirmed no ulcers were present in my stomach and duodenum, but more importantly no more Necrotizing Acute Pancreatitis in my abdomen!

On June 5th, 2014 Dr. Steven Jones, a Lipid Specialist and Cardiologist at Johns Hopkins University Hospital, diagnosed me with Chylomicronemia. Chylomicronemia is a genetic disorder in which the body does not break down fats correctly. This gene disorder is reported in 1 out of a million people in the United States. Chylomicronemia caused my Triglycerides to skyrocket (aka Hypertriglyceridemia) on November 14th 2013, which led to my attack of Acute Necrotizing Pancreatitis. For those of you who don’t know what the pancreas is, it is a vital digestive organ located behind the stomach that produces chemicals called enzymes, as well as the hormones insulin and glucagon. It plays an essential role in converting the food we eat into fuel for our body’s cells. These enzymes are only activated after they reach the small intestine, where they are needed to digest food. When these enzymes become activated inside the pancreas, they begin to digest the tissues of the pancreas. It literally leaks these digestive enzymes and begins to “digest itself”. This causes swelling, bleeding (hemorrhaging), and damage to the pancreas, blood vessels, and surrounding organs such as the heart, kidneys, liver, and the cardiovascular and central nervous systems. It is called Acute Necrotizing Pancreatitis. That is why the pancreas is called “The Angry Organ”, if you mess with it, it messes with you back ten fold but my mom says a billion-fold. It is a very needy and selfish organ that pulls blood and oxygen from other organs to protect itself when it gets severely inflamed.

The night of my first hospitalization my triglycerides were 4,930 (a normal triglyceride level is under 150). My lipase was 10,000 (normal is 10 – 140). I was transported to Inova Fairfax Hospital’s Trauma ICU and the first of many procedures and surgeries were starting with an Emergent Plasmapheresis into my jugular. Plasmapheresis is a procedure in which whole blood is taken from a person and separated into plasma and blood cells; the plasma is removed and replaced with another solution, such as saline solution, albumin, or specially prepared donor plasma; and the reconstituted solution is then returned to the patient. After this 4 hour procedure, I was predominantly held in the ICU for 83 nights among 3 different hospitals. My entire hospitalization continued for another 5 months with the longest being a 46-day period. I have had a series of ICU hospitalizations at Inova Fairfax Hospital from Nov 14th – Dec 6th, Dec 20th – Dec 28th, Jan 28th – Feb 2nd, Feb 6th – Feb 24th, and April 15th – April 19th. I was then transported to Johns Hopkins Pancreatitis Center and ICU from Feb 24th – March 19th. This entire time my body was suffering from Acute Necrotizing Pancreatitis along with all of its cascading complications. ‘I went through ‘a series of chemical or physiological processes that occur in successive stages, each of which is dependent on the preceding one, to produce a culminating effect’. This explains my Acute Necrotizing Pancreatitis and I was fighting a cascade of life-threatening events. My body formed 3 enlarged, multi-complex, partially loculated, rim-enhancing pseudocysts, multiple abdominal fluid collections, and pelvic ascites with inflammation in and around my pancreas. This led to lactic acidosis, hypocalcemia, elevated lipase, excruciating knife-like abdominal pain, anemia, tachycardia, tachypnea, leukocytosis, bilateral pleural effusions with bibasilar atelectasis, hepatic steatosis, ileus, and SIRS which is a Systemic Inflammatory Response Syndrome that occurs when your body has the most severe infection and goes into shock. I was septic and experienced agonizing joint pain in my elbows, ankles and knees and my belly was so distended I looked pregnant. I gained over 30 lbs in just 3 days from aggressive IV fluids. Then, I lost 60lbs throughout my total hospitalizations. My body went from one extreme to the other and I could not eat or drink water for 2 weeks as well because it would upset my pancreas more and therefore inflame more. My pancreas was pulling blood from every organ in my body and I was developing a serious life-threatening infection from drains, abscesses, necrotic tissue, and overall trauma to the body. One night I couldn’t breathe and they had to do an emergent thoracentesis for my left plural effusion with sepsis. I didn’t know what was happening but I had to bend over so they could stick a needle deep into my back and into my left lung, then aspirated the cloudy fluid that was accumulating. It was extremely painful but so relieving to breathe.

The amount of pressure to make surgical intervention decisions my family and I went through was immeasurable. We heard polarizing thoughts and beliefs from surgeons and we constantly weighed the pros and cons to put a drain in my abdomen or to not put a drain into my abdomen. Unfortunately once I became more ill, this pressure was lifted and all of my procedures and surgeries were deemed necessary and considered at high risk. I had a 107 F temperature the day I was transferred to Johns Hopkins…(I didn’t think it was possible either). I experienced the craziest chills where my whole body was shaking so much it started to shake my hospital bed. My entire family was wearing their winter jackets and had blankets covering their legs, but I had a fan on full-speed with no covers because I was also so incredibly hot. I experienced scary paranoia episodes and delirium because my body became so infected and I do not remember 2 + weeks of my life and I don’t remember undergoing one particular surgery. I have had 10-12 abdominal drainage procedures and upsizes with 3 drainage tubes in my abdomen at a time. Because I was loosing so much weight, they needed my body to build up as much nourishment before another surgery so a feeding tube was inserted into my jujejum for 2 weeks. I have had 2 retroperitoneal lavages or abdominal cavity wash outs to reduce bacteria load. A laparotomy and necrosectomy, 5 blood transfusions, a thoracentesis, and have relied solely on an oxygen tank to breathe many times. I have had countless X-rays, Ultrasounds, Cat-scans, ERCPs, and MRIs. I experienced severe night sweats for 5 months, which caused me to wake up several times throughout the night needing to change my sheets and hospital gown. I was treated with triple antibiotics, fluid IVs, narcotic IVs, a heart monitor, a permanent blood pressure cuff, catheters, PIC and Central lines. During one hospitalization 6 weeks passed w/o a shower. For several weeks, I also had to do memory practices. Each time the nurse would say ok, Kim repeat after me…red…orange…apple…three..etc and I couldn’t remember what she said. She asked me if I knew me name and where I was. I lost memory for 2 weeks and don’t remember a thing or anyone visiting me. My mom said the times I tried to talk, my voice changed into an unrecognizable deep tone and that I could not formulate any words.

I had a surgery that was called a VARD procedure and I was considered lucky to be under Dr. Singh and Dr. Mackary and their surgical team’s care at Hopkins. A VARD procedure is a procedure that is done when drains are failing because of a clogging, infections, etc. It is a Videoscopic Assisted Retroperitoneal Debridement and is a hybrid way to treat severe, infected, necrotizing acute pancreatitis. Being a critically ill patient, I have seen over 100+ physicians and in worse cases, 15+ at one given time (lucky me). The head from each department (ortho, trauma, gastro, infectious disease, pulmonary, general, respiratory therapists, interventional radiologists, and physical therapists) and his or her entire team comes to wake you up each morning at 6am during rounds to give you their treatment plan. Every hour after that, another department comes in and in between I was being dragged away for another scan or x-ray or test somewhere. Nurses came to draw my blood every 4 hours and once at 2am to weigh me. I hardly slept, and when I did it was because I was too weak to do anything else and effects from the narcotics. I was discharged from Johns Hopkins March 19th, 2014 and was recovering well for 4 weeks until I, unfortunately, experienced another life-threatening event. One night before this traumatic event, I decided to go for my first run/jog/walk. I woke up in the middle of the night sweating profusely and feeling critically ill and like I was going to throw up everywhere (again). Naturally, I immediately called out for my mother but by this time I was already walking toward my bathroom. I blacked out, fainted, then collapsed because I had a hemoglobin level of 2.8 (normal is 12-16 g/dL) and a hematocrit of 8.7 (normal is 37-47%). I virtually had no blood in my body. I had fainted and hit my head on the marble slab in my bathroom and immediately seized, with my eyes rolling back into my head. I woke up to my mother holding and shaking me as she called 9-1-1. The EMTs came into my bathroom and carried me out into the ambulance where I was given fluid IVs immediately. My blood pressure was 80/50 and I was transported to Inova Fairfax Hospital where they emergently transfused 3 units of unmatched blood into my carotid (they didn’t have enough time to cross-check blood). Multiple other tests, MRIs and CT-scans of my head and brain were performed but nothing was as scary as when I was laying in the hospital bed and 10-15 physicians ran into my room, kicking my mother out, and thankfully saved my life. Unfortunately I had to experience what it was like for a tube to go down into my duodenum awake twice, once for a feeding tube and the other to confirm that my stomach was bleeding. My confirmed diagnosis was 3 bleeding stomach ulcers and 1 bleeding duodenum ulcer because of ibuprofen usage. I was taking multiple types of pain medications and sedatives during my hospital stays but I, just like any other experiencing mild pain, took ibuprofen because of my lingering pain from all the trauma of acute pancreatitis. I also had 1 confirmed hematoma outside of my brain (thank you God it wasn’t inside) from my fall. After my fall, I was diagnosed with positional vertigo and experienced severe dizziness, lightheadedness, and intense headaches. My neurologists told me that I was like one of those Direct TV commercials…you know, the ones that are all caused by the previous.. “when your cable goes out you get stressed, when you get stressed you need to get away, when you need to get away you go some place exotic, when you go for something exotic you get bitten by something exotic” ..blah blah etc. And agreed!

These past 8+ months have been the most difficult and incapacitating months that both my family and I have ever experienced. I have gone through the most rare cause of Acute Necrotizing Pancreatitis (less than 1% world population) and all of its multi-organ failing, domino-like effects on the human body. I have had several doctors telling me that I needed to stop setting medical records at their hospital and I have had more CT scans with radiation in 8 months than anyone should undergo. And, I probably experienced more life-threatening events than you will in your entire lifetime. And unfortunately I now know and understand why the pancreas is called the “Angry organ”. Thank you God for my life to return back to some kind of normalcy. I’d like to dedicate my story to my Mother who has cared for me since the day I was born, but especially for these past 8+ months. To my Father, who made sure I smiled every day while in the ICU and whose unconditional love makes me the positive person I am today. Thanks for washing my hair all the times you did, rubbing my feet, making sure I was warm, walking with me in the ICU, going to labs to get blood drawn and never missing a follow-up appointment, holding my hand, and most importantly praying for my good health to return. To my sister and brother-in-law, whose upbeat personality was and is the best medicine. To my other sister’s endless love and support. And to the rest of my entire family and close friends whose colorful personalities and faith in God brought me the strength to fight. Without their endless love and care, I would not be here today. *Unfortunately, my pancreas has digested about 90% of itself which leaves me at an increased risk me to become a Type I insulin-dependent diabetic. In the near future, I will have my gall bladder removed because of the potential risk of getting another attack of pancreatitis. I take enzyme pills whenever I consume food to help with digestion. I also take a daily lipid medicine that controls my genetic disorder. I consider myself lucky after everything I have been through. Being a Type I diabetic and having a Type I genetic disorder is nothing!