May 29, 2024 update.

Originally posted on social media May 29, 2024.

"I was discharged 1 month ago today. It's been great to be home. Settling into a routine that includes nightly 14 plus hr feeding by NJ tube, waking up every 3 hours to add in the pancreatic enzymes. I have mixed results some nights the nausea, and restless sleep is overwhelming, but can be follow by a perfect sleep filled night. More good nights are coming I can tell😊

Today I also returned to the hospital to have the liver bile duct drain/stent removed, and pickup another 30 day supply of feed fluid🙄 Slight tenderness around the site but the drain removal didn't hurt👍

Still waiting for the fistula to finish healing, it's taking longer than expected but things are heading in the right direction.

I am lucky to have such great a medical team taking care of me. They listened to me, acknowledged my concerns, allowed me to have input into the plan and to move forward at a pace I felt comfortable with. It didn't always flow smoothly, there were disagreements, I was a pain in the ass at times, and I had to push back a few times, standing my ground on issues.

I think listening to my body, and documenting issues really help keep track of things and is proving to be very valuable in my recovery."

May 29, 2024, feed supplies.


May 29, 2024 picture before the PTC drain was removed	. Installed Feb 22, 2024.

Comments

Vitamins, minerals and energy.

I had been living a very active life since I was in my late 30’s. I started road biking, and then mountain biking and loved it. Mountain biking became my to go to exercise, and I loved peddling up the longest hills I could find . I took part in many races, single and multi day events, never really too win but to see what I was capable of doing, to see new wilderness areas and meet good people. Living with Familial Adenomatous Polyposis (FAP) gave me a reason to take care of myself and keep pushing myself, I figured if I was able to ride a bike as much as I did there wasn’t anything wrong with me. In July 2023 polyps in my duodenum started to show signs of change, and a large flat adenoma was un able to be removed, so I decided to have the Whipple Surgery in Nov 2023. The surgery went okay, biopsies of the large adenoma showed high grade dysplasia and I had a lot of complications after. As a result of the complications I was put on TNP feeding, then transitioned t...

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Dec 15, 2023 update.

Originally posted to social media Dec 15, 2023. " Friday update. Day 28, back on full fluid diet, but only able to drink very little to start, took me all day to drink an Ensure, but wow was it good lol. One drain removed this morning, 2 still in(one active), CT scan ordered and waiting for that. The medical team hopes the CT scan may show where the fluids is coming from. Goal is to get me on solid food, off the IV TPN feeding and able to pass it through the digestive system. Still going slow and steady." Dec 14, 2023. Dec 15, 2023.

The FAP - Whipple Report

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