TPIAT Transplant Surgery

I am a healthy 40-year-old mother of a toddler (or at least I thought I was until after giving birth to my daughter in 2012 when I was diagnosed with Genetic Pancreatitis). I had experienced 7 episodes of pancreatitis in 15 years and doctors just thought it was acute pancreatitis each time. Then, after giving birth, I was hospitalized 3 times in 3 months. I was approved for genetic testing and learned I inherited a dominant gene from my mom and a dominant gene from my dad, giving me a mutation in my Spink1 gene. It's very rare - you could say I hit the genetic lottery or you could call me a unicorn! None of my 3 siblings or parents have ever experienced any episodes of pancreatitis, thankfully. Essentially, I've been living with this disease for more than 20 years.

I'm being treated at Johns Hopkins Hospital in Baltimore. It's one of only 3 or 4 hospitals in the U.S. that treat genetic pancreatitis and they've only been treating it since the late 70s. Hereditary pancreatitis is an inherited form of pancreatitis characterized by recurrent episodes of painful pancreatitis starting at an early age. Currently there is no cure for genetic pancreatitis. I am at a much higher risk of developing pancreatic cancer later in life. I just learned that my surgical team has been seeing pancreatic cancer show up in too many of their younger patients, so it's time for me to have the big scary radical surgery.

This major/life-altering surgery - removal of my pancreas and transplant of my islet cells into my liver (a.k.a. Total Pancreatectomy and Islet-Auto Transplant or TPIAT) has been scheduled for the end of November.

The short of it is, take out the pancreas and salvage pancreas cells (islet cells) and put them back in the liver to try and prevent brittle diabetes. The end result is living without fear of pancreatic cancer, but also possibly without diabetes. Click here for info on Auto Islet Cell Transplant at Johns Hopkins. 

I have to take pancreatic enzymes prior to all meals and snacks. The genetic mutation I have (Spink1) causes my pancreas to activate my enzymes too early (inside my pancreas), rather than in the instestines. This causes calcification within my pancreas (growth of stones) and pain.  I'll take these enzymes for the rest of my life. 

All of this is difficult when raising a toddler and not to mention costly. 

I am lucky, I have a great support system, a great job and medical insurance. But without more than the state minimum short term disability coverage, the 12 week recovery period will be difficult to navigate without my salary.

Help covering the cost of lost wages, travel expenses (Upstate New York to Johns Hopkins), medications, doctor's visits, hospital stays, childcare and future medical costs would be greatly appreciated.