The FAP - Whipple Report

 I went into the Whipple Surgery , Nov 17, 2023, with the belief that I would be home in 7 days and recovered in 3 months. The surgery it’s self went okay they tell me, but 4 days later I developed a pancreaticojejunostomy (PJ) leak , followed by hepaticojejunostomy (HJ) leak and there were delays in acting on these complications. It got so bad 2 of my close friends had to come in and talk to the medical team to find out why a CT scan ordered on Nov 24, 2023 still wasn’t done 2 days after it was ordered. By the time the CT scan was done things had gotten much worst and it was the start of a very long recovery . This when I started to notice it was very important for me to pay attention, advocate for my self and my health care. Nobody knows your body and how you feel better than you.  Unfortunately I didn’t start making notes or taking pictures until I was discharged, Jan 5, 2024, after 50 days in the hospital. I was sent home with 2 drains and a very active leak that was com...

 I wasn't sure what life would be like after my Pancreaticoduodenectomy or "The Whipple" in Nov 2023, my big concern was the change in quality of life and would I be able get back on the mountain bike. The surgery it's self went really well they tell me, but on the start of the second week, when I should have been going home I developed several leaks and this was the beginning of a long difficult recovery . I started to worry that this was what my new normal would be like, but some how found the drive and energy to walk as much as I could while spending 140 days in the hospital. I kept telling my self this would help me get back to the life I wanted. Friends and family helped support me, gave me the energy I need and reminded me to keep my sense of humour.  A group of friends, family, and strangers put to together a Gofund Me campaign and bought me a Rocky Mountain Instinct Ebike , at first I wasn't sure how to take it. Did they think I wasn’t going to ever be ab...

 WARNING: This post contains medical graphic pictures. Apr 1, 2024 was a day I had been dreaming about since my Whipple Surgery ( Nov 17, 2023) and the complications that started a few days later. It was the day the Enterocutaneous Fistula stopped outputting any fluid or paste. I was secretly happy to see no discharge from the fistula, but was still skeptical to believe things were healed. I think I didn’t even tell the medical team for a day or 2. For 4 months I had spent many sleepless nights reading about how these fistulas could cause problems requiring surgery to try and fix them. I had even had a room mate for a day who was back in the hospital again because they were experiencing problems with a similar fistula for over a year and a half. I was very concerned the fistula would cause more problems than the original surgery or reduce the quality of my life. Zero output of the fistula was a huge step forward in the recovery but it was still another 3 months before the scab fe...

 In Sept 2023, I was in the process of making the decision to have, or not have The Whipple , I asked the surgeon “ Will I be able to ride my mountain bike after The Whipple?”  I love riding my mountain bike, and being out in nature, it has helped me for years deal with living with Familial Adenomatous Polyposis (FAP) . The surgeon told me I should make a full recovery, and able to live an active life. After hearing this I started to make a plan of how I would get through the surgery, and recovery. I was figuring 7 days in hospital, and 3 months at home, this seemed to be the standard. I had no idea it would be such a long difficult time .  One of the first things I did, in the month that was leading up to the surgery, was buy a flag with a happy face on it. Then took this on a mountain bike trip, spending time each day saluting the flag , starting the process of focusing on a positive outcome for the surgery. I was lucky to have my family, and friends in my life. I enl...