A personal story of living with Familial Adenomatous Polyposis (FAP), and life after The Whipple Surgery.
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Returning to My Happy Places, after The Whipple.
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 enlisted their help to keep me in a positive mind set. When things got rough, and I was very frustrated I had to lean on them for more energy. We talked about how this had to be a positive experience, even if the worst was to come, and not to dwell on the negative. I set up a What’s App chat group so I could keep in touch with my family, and friends that couldn’t be there.
The surgery went okay they tell me. I remember the first visit I had after the surgery, a group of my friends brought in a new happy flag, and hung on the curtain around my bed. I could look at each day, remember what my goal was, to return to a happy, and active life. With in the first week post Whipple I developed several leaks, and then a stubborn fistula, the recovery started going very poorly. I had no idea at that time I would spend a total of 140 days in the hospital, 2 separate hospital stays, and another 60 days with a NJ feeding tube at home once I was discharged. From the start I had a series of pictures, and personal memories, I called “My Happy Places”, that I dreamed of revisiting when I had recovered, and had the strength. Early on in the recovery it seemed easy to stay positive, but as the weeks went by I would have times I really struggled to stay positive. I was frustrated that the healing was taking too long. This is when I knew I had to talk to my family, and friends, look at “ My Happy Places” pictures, listen to music, and walk as much as I could. It wasn’t easy but I found small things to get me by, and worked hard as I could to get better. I started taking notes, and pictures so I could keep track each day of how things looked, and what was going on. I would see patterns, changes, or useful information I could share with my medical team, some of which proved very helpful. Now as I look back at what happened I am not always sure how I did it, but staying positive, and focusing on getting back to see "My Happy Places" must have had something to do with it. I know I am very fortunate to have so many great people in my life, great care from the Health Care workers, and my health. There was a lot more that could have gone wrong, or changed my quality of life, I owe the Universe a big THANK YOU. Cheers
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...
A short summary of the Whipple Surgery, Pancreaticoduodenectomy , the complications, and 140 day Hospital stay that followed. Most of the information is a direct copy from my Hospital discharge report (spelling mistakes have not been corrected). I have added some other information, those notes are in italics. Warning medically graphic picture links included. A more complete summary, with pictures maybe seen here : https://fap-whipple-report.blogspot.com/2025/01/a-summary-of-key-events-for-whipple_10.html I had the Whipple Surgery in Nov 2023, it seemed to go well, 4 hrs of less in the OR. Normal as it could be the 1st few days, mild pain, walking as often as I could. Nov 24, 2023 Nurses note “ Abdomen +++ distended and firm.” “ Patient now complaining of 10/10 pain and laying in bed in fetal position holding abdomen.” “ Pending CT, form completed, IV access available.” Nov 26,2023 Nurses note “ CT abdomen pelvis ordered on Friday. Still not done on Sunday. Action: I spoke...
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...
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