Sunday, November 25, 2012

Sunday, November 25, 2010

Hi!! I'm Sandy and I'm starting out on a new journey in my life with chronic pancreatitis (CP). I've decided to chronical my journery so that others living with CP can maybe have an easier road to treatment by reading about my experiences & learning from my mystakes and positive steps. That is my hope anyway!!

Over the summer I researched the surgery, total pancreatectomy with islet autologous transplantation (TP-IAT) as a treatment to end my pancreatic disease & decrease my chronic abdominal pain from the CP. I found two very capable doctors at Massachusetts General Hospital (MGH) in Boston who I have consulted with. They have indicated that I am an excellent candidate for the TP-IAT!! This is a new program at MGH, so there's a bit of red tape that has to be gone thru before my surgery can be scheduled. More on this later!

 In this surgery the doctor, Dr Keith Lillemoe-pancreatic surgeon, will totally remove my pancreas. Then in a special lab, Dr Jim Markmann-transplant surgeon, will isolate the islet cells (they produce my insulin) & purify them, readying them to be transplanted back into my own body. This process takes from 2-4 hours. While the islets are being worked on, Dr Lillemoe will be rerouting my intestines & common bile duct so that they will be able to function somewhat normally and he will remove my spleen also in the process.

When my islet cells are ready, Dr Markmann will inject them into my renal capsule. This is the transplantation process for me. Normally, the islet cells are injected into the portal vein in the liver but this can cause catastrophic clotting in a person who clots normally. The surgeon injects heparin at the same time as the transplant to prevent this complication. However, I have a clotting disorder already, so it is contraindicated in people like me to have the islets transplanted into the liver. Dr Markmann consulted with The University of Minnesota's TP-IAT program about where else he could transplant my islets to that has been a successful place for revascularization (the process of building new blood vessels) for the islets. Together we decided that my renal (kidney) capsule will be the optimal place for my islets to function after transplantation.

Remeber I mentioned some red tape associated with my surgery? Well, transplantin islets into my renal capsule is experiemental which means that we have to contact the trasplant oversight committee for approval, a process that takes 3-6 months. I'm almost at the 3 month mark...another 2 weeks & it will be exactly 3 months. Dr Markmann told me in his experience it usually takes 3 months to get an answer back. He also stated that he is extremely confident that we will be able to go ahead with the surgery & transplantation into my renal capsule because there is no other alternative & it is the best option in my particular case. So, It's killing me waiting for the final decision regarding my surgery!!! I'm hoping that sometime in January I will be bale to have my surgery!! Wish me luck!!

So, this is where I stand as of right now. I'm in a holding pattern. I've had 2 hospitalizations in October for flares of my symptoms but have been home since getting through the ups & downs with the help of my PCP & GI doctors.

Thanks for reading my first post! I hope to be back at least once everyday to keep you posted on my journey with CP!!!