The FAP - Whipple Report

 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 d...

 Originally post to social media May 24, 2024. "Today started out as most of my days do lately, feeling tired and low energy. I had to return to the hospital and have a new NJ feeding tube installed. Sitting in the waiting room brought back a flood of emotions. I started thinking about the fact I would pick up another month of feed fluid next Wed, and was this every going to end. I returned home and as the freezing wore off the tube was bugging my throat, making it hard to talk or swallow. I felt very discouraged, not sure I had the drive to keep going with this feeding, but I have to keep going. I decide a nap would help things. Waking up feeling a little better, but still struggling to get my self out of a very negative place was a challenge. Sitting in my comfy chair, getting ready for another 14 hr feed cycle the tube settle in to a comfortable place. Still knowing the nausea would soon start I wasn't looking forward to the evening. A knock on my door and ...

 Originally posted on social media May 17, 2024. "May 17th marks the 6 month anniversary of the Whipple Surgery . It's been a challenging 6 months, recovering from the surgery has been slowed by recovering from the damage done by the 2 leaks and fistula (Liver bile duct and stomach / small bowel connection). Being home has been a great pleasure, enjoying the ever changing clouds and weather. Pictured above is a selection of snap shots taken in a 20 hr period. As you can see the clouds move and change, the weather is hard to predict at times. I am comparing the clouds and weather to my recovery. I have good and bad days, and really can't predict how things will be from day to day. I did think going into the surgery by 6 months I would be back or close to my new normal life, but still healing and recovering is how I spend my days. I am very thankful for what I have, the health care that has got me this far, family and friends that keep me on the positive path...

 Originally posted on social media May 4, 2024. "Discharged 5 days ago after a total of 143 days in the Foothills (that takes in to account that l was home 22 days in Jan). The fistula has stopped out putting but still healing. Still not eating anything until the fistula is healed. I am being very cautious, maybe too cautious, I won't even let the team remove the bile duct stent/drain yet. Just want to make sure the fistula and all the damage it caused has healed. I was discharged on the home feeding tube system . It gives me 2550 calories, 1700 ml of fluid in a 16 hour feeding cycle. Also have to take enzymes to help digest the feed fluid, so I am getting up several times over night to mix them in. Discovering the fluid at room temp is still too cool for the digestive system, warming it up slightly using a heating pad helps cut down on the nightly nausea. Not sure how long I will have to stay on the feeding system, maybe a month. Then transition on to solid food...