My journey to a pancreas transplant

My name is Laila Roy. I am a 37 year old mother of three children suffering from Cystic Fibrosis-Related Diabetes. My health is failing, and I require a pancreas transplant to live. I desperately need your help to cover the costs of the pancreas transplant surgery, follow-up care and ongoing recovery. Will you please be so kind as to help me by contributing to my care? Will you please be a partner in my successful transplant surgery and reintroduction to life?

Our Family

As long as I can remember, I have been sick. Some of my earliest memories of doctors’ offices, emergency departments, and hospital rooms. I have been hospitalized (with each stay lasting at least a week) over 50 times since birth. I have endured countless invasive procedures, had five organs removed, and had nine major surgeries performed on me. My childhood was a merry-go-round of acute attacks of agonizing abdominal pain with stomach heaving nausea and vomiting punctuated by stretches of pain-free normality.

At 11 years old, during a 3-month stay at Lebonheur Children’s Hospital, I was diagnosed with a rare inherited disease – acute familial pancreatitis. It is an insidious and horrendous disease in which the enzymes that the pancreas produces to digest fat in the small intestine instead get trapped in the pancreas and essentially begin to digest the organ. These acid baths of the pancreas are sheer torture.

By age 13, the insulin-producing islet cells in my pancreas were obliterated. I was diagnosed with type 1 brittle diabetes. The attacks continued and so did the damage and destruction.

At age 19, my condition deteriorated and changed from acute familial pancreatitis to chronic. I no longer had months between attacks. I began to experience an attack that would last 24/7/365 for over 3 years.

I woke up in pain. I went through my day in pain. I tossed and turned at night in pain. I had descended into hell.

At age 23, I was admitted to hospital. The physical and mental agony had become unbearable, and I simply could not function. My body was shutting down. An oncologist that specialized in pancreatic cancer was assigned to me. He ordered genetic testing to ascertain my risk for cancer. Years of elevated pancreatic enzymes made the possibility of some form of abdominal cancer highly probable.

The result of the test was astonishing and disturbing. I not only had a gene for familial pancreatitis but cystic fibrosis as well. This new diagnosis identified that I was never Type I, but rather I had a more complicated form of diabetes – cystic fibrosis-related diabetes (CFRD) – with far reaching complications. The nature of the mutation of genes meant that my heart and lungs were not affected, as would be a typical consequence of cystic fibrosis. Instead, all deterioration had been focused on the pancreas.

Armed with the results, the oncologist performed a radical 16 hour surgery to remove a portion of my stomach, several feet of small intestine, and all of my spleen and pancreas.

I spent seven consecutive months in hospital with that surgery. The pancreatectomy was absolutely necessary, but my life has never been the same.

Without a pancreas, I don’t make essential digestive enzymes, insulin, or glucagon – an emergency brake for excess insulin. Glucagon is the body’s natural rescue from low blood sugar. The lack of glucagon is what makes me a brittle diabetic.

My response to insulin fluctuates wildly. I suffer from frequent hypoglycemic episodes. Between hyperglycemia (high blood glucose) and hypoglycemia (low blood glucose) hypoglycemia is by far the worst. Chronically high blood glucose will slowly kill you, but a single low blood glucose can kill you instantly.

Life without a functioning pancreas is like being on a never-ending roller-coaster ride. Everyday is a series of climbing the highest peaks and then descending into the lowest troughs.

I am always exhausted. My cells aren’t receiving the glucose that they need to perform. They either can’t accept the sugar in my blood because I am lacking insulin or they have become insulin-resistant or they have become extremely sensitive to insulin. Either way, the result is a constant seesaw of blood sugar levels and an ongoing state of exhaustion.

As of Friday, January 19th, 2018 the flicker of hope of getting off of this roller-coaster was illuminated for me. The wonderful transplant team at Methodist University Hospital in Memphis, TN gave me the green light for a pancreas transplant.

Now, I am on a new roller coaster – a rollercoaster of emotions. I am thrilled to have been given the chance at a better life. I’m excited by the idea of having the physical and mental stamina to take care of my 3 bundles of energy, AKA kids. I am humbled and honored that a family will set aside their grief and make the decision to donate the gift of life through organ transplantation to a complete stranger. Rising above all of these churning emotions is stress. I am incredibly worried about the financial aspect of the entire process. The costs for a pancreas transplant, doctors fees, hospital fees, recovery, testing, post-op inpatient testing, ongoing lab work, and immunosuppression medications is staggeringly high and that is just the medical costs. The non-medical expenditures can be quite expensive as well. Lost income, travel to and from the hospital and clinic appointments, food costs for any caretakers, the logistics of childcare, and many unforeseen expenditures all come together to turn me into a stressed out, anxious and exhausted Mommy.

Recovery is difficult enough. Having some of the burden of medical and non-medical costs lifted off my shoulders would be so incredibly helpful and healing to me. I could devote my full attention and energy to getting back on my feet. I know that I could be up and running in no time.