The FAP - Whipple Report

 Originally post on social media Nov 17, 2024. Nov 17, 2024 marks the 1 year Whipple Surgery anniversary, or " Whippleversary", as it's known as. I feel fortunate, and thankful to be able to share how it is now after a full year. I feel like one of the very lucky ones so far. I am still struggling with my strength, fitness, and can't use my core like I use to yet, but that hopefully will improve. Eating is going well, but sticking to the same medication, diet, and small more frequent snacks/meals 9 or 10 times a day. I have to watch my iron (Ferritin), and vitamin D intake, those started to change in the last blood work. The mental healing, and change caught me off guard. I go from feeling, guilty, glad, sad, and mad(at myself) all in one day. It's so confusing, and frustrating to experience the mixed feelings, but it's part of the healing they say. There are times anxiety, and a touch of depression hit me, and I feel over whelmed with simple th...

 Originally posted on social media Sept 8, 2024. "I got to visit another one of my "Happy Places" . It maybe my favorite of all the places that I was dreaming of visiting again after the Whipple Surgery. I also hit the 800km mark on the ebike that was gifted to me by family and friends to help get me back on the trails. I received the ebike on May 24th, I still remember the first time a saw the bike and sat on it. It made my day, it has made my summer. A big thank you for the bike that has made it possible to visit my Happy Places. 🙂 Recovery is a balance between the physical and mental healing. Getting to do something you love, seeing places that hold a special place in your life, helps with the healing. 🙏 I love the people, bikes, and the places in my life. Cheers."  

 Originally posted to social media Aug 17, 2024. "9 month Whippleversary, living Day by Day. Things have been going surprisingly good, I had no idea things would go like this. Eating 7 or 8 small meals / snacks a day, blood work looks good, but need to put on 10 or 12lbs. Energy is fluctuating, and strength is still low . Sense of humor is healthy, positive attitude is strong, and desire for adventures is increasing. 😜 Only taking 2 prescriptions, Viokace ( Pancreatic Enzymes) and Pantoprazole (Proton Pump Inhibitor) , reduces stomach acid so the acid doesn't damage the updated digestive tract. No daily pain or nasuea medication. 👍 Slowly feeling like I am getting my life back and adjusting to the "new normal". At times I forget what happened the last 9 months, and get a slap in the face reminder when I over do things . I still struggle with some tenderness, numbness, and  occasional sharp pain around the old fistula site. They tell me this area is s...

 Originally posted to social media July 24, 2024. "Sunday July 21st ride details. I left home with the dream of doing a long ride on some trails near home. Leaving the parking lot I felt like a million bucks, strong, confident, and full of energy. I felt unbelievable good, and decide I was going to see how far I could go on the ebike using the lowest power setting. I made it almost 12 k, with 450m of elevation of the 19 k ride, 678m total when I hit the wall. It was getting hot and I had 2 more climbs plan, Boundary and Snagmore. I realized I was running out of energy and just need to get back to the van. So I upped the power setting, blasted up Boundary and down the other side and bailed on Snagmore. I got back home and realized I may have over done it lol. I did a small recovery ride on Monday morning, but had to pay for my Sunday effort. Felt run down, and an achy body for 2 days after. Valuable lessons learned from this ride. I am not back to my pre Whipple Surge...

Originally posted to social media July 15, 2024. "This video is dedicated to an amazing group of people who gifted me a new Rocky Mountain Instinct e-bike, and the staff of Unit 102 at the Foothills Medical Centre in Calgary. The bike I named Unit 102 in honor of those who took care of me after my Whipple Surgery and the complications that followed. Without your care I don't think I would be riding my bike on trails like this.😊 To the group of people that gifted me the e -bike, family, friends, and people who I am not sure I have met yet or seen in years, THANK YOU from the bottom of my heart. You have no idea how your gift has touched me. It has allowed me to get out, ride, and start to mentally heal from a long rough recovery.❤️ The trail is Jumping Pound, part of a local epic alpine ride in K Country. The view is one the places I would close my eyes and visualize when things got really tough. I spent countless hours thinking about all the places I wanted ...

 Originally post to social media July 7, 2024. "TUBELESS, and not just taking about my bike (Unit 102), but myself as well. For the first time from Nov 17, 2023, to July 4, 2024, 231 days, I don't have any tubes coming out of me, no IV, epidural, catheter, PICC, NG, drain, or NJ feeding tube😊. The NJ Feeding tube was removed last week, and it feels great. I have been drinking a mix of protein, high calorie drinks, and eating soft foods. Each day I am trying a new food item to see how it goes with digestion. I have to take Viokace, a Pancreatic enzyme, in the pill form now. I am still not sure how many pills I need to take each time. It's hit or miss, trial and error approach. Try something to eat, take a pill, write down when I take it, and if there is any reaction or discomfort. After sometime I will see if there is a pattern to help me figure out how many pills I need. There is a chance my pancreas will work enough so I won't need to take any enzymes,...

 I had the Whipple Surgery in Nov 2023, then a few days post surgery, Nov 26, 2023 the 1st anastomotic leak was detected, a pancreaticojejunostomy (PJ) leak, followed by hepaticojejunostomy (HJ), and a enterocutaneous fistula started to form. The gastrojejunostomy (GJ) leak, a new connection between the stomach, and small bowel, wasn’t truly discovered till Mar 15, 2024. The leaks exited my body through the fistula that formed in the surgical incision, just above my belly button. To help me heal I was put on TPN feeding, then eventually transitioned to a nasojejunal (NJ)  feeding tube. When the NJ feeding tube was installed I was on TPN feeding, and the plan was transition to the NJ feeding so I could go home. We first tried to mix Creon, a pancreatic enzyme, in water so it could be injected into the feeding tube, I didn’t feel comfortable taking Creon by mouth. I was concerned the Creon I had taken by mouth in early Jan 2024 had leaked out of the gastrojejunostomy (GJ...

 Originally posted on social media June 23, 2024. "UPDATE: June 24, the fistula scab fell off this morning, revealing what looks like a fully healed wound site. I am so excited, it's been something I have dreamed about for over 6 months I will still go for the CT scan, as the incision site is deformed with a depression or "valley" where the fistula was. ORIGINAL POST: I had a follow up last week with the surgeon, I was asking why it's taking so long for the fistula to heal. The fistula hasn't out put anything since Apr 2 (84 days to the date of this post), and the last CT scan was done on Apr 17. He showed on the CT scan what the fistula and pocket under it looked like over 2 months ago. I guess it explains some of the reason why it's taking so long to fully heal. I have a follow up CT scan in 2 weeks and hope it shows the healing is progressing. I was given the okay to try fluids by mouth last week, that seemed to go well. Nervously I have moved on to ...

 Originally posted to social media on June 4, 2024. "Back on Nov 17, 2023 as I sat outside the operating room, waiting for what felt like for ever, I had to use all my energy to not run away. The fear, stress, and anxiety of what I was about to go through was almost too much to handle. I started to focus on places I wanted to see again when I recovered from the Whipple Surgery . I closed my eyes and visualized some of my favorite places , I listed them off, and kept repeating the list over and over. Above are video clips of some of the places I want to see again when I am stronger. I also needed something to do when I recovered, a way to payback the universe for taking care of me. So came up with "Spreading Happiness" sticker idea. Happiness: an emotional state, feelings of joy, contentment, and fulfillment, often described as involving positive emotions and life satisfaction. 🙏 I want to spend my time spreading happiness, not sure how, but will do what I c...

 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...

 Originally posted on social media Apr 17, 2024. "April 17th, 2024 is the 5 month Whipple Surgery anniversary, and marks 131 days, and counting, in hospital. I was home in Jan for 22 days, and a few hours on day passes has been my only break from the hospital. Currently working on getting the small bowel working and digesting liquid nutrition via the nasojejunal(NJ) feeding tube. TPN IV nutrition is being scaled back as the NJ feeding is increased. The fistula(leak) from my stomach to the insecion is slowly healing. To by pass the leak the feeding tube goes through the stomach past the leak into my jejunum, part of the small bowel. Nothing to eat or drink for awhile longer because of the leak in the stomach. There have been some rough days in the last few weeks where frustration and negative energy got to me. Progress seemed to be slowing down and my dream of getting home earlier was crushed. With the support and help from family, friends, and the health care team I was able t...

 Originally posted to social media Apr 1, 2024. Amazing that this white IV liquid is keeping me going. I am not eating anything giving the fistula ( leak) in my stomach time to heal. The output from the fistula has gone down, but now and then it picks up just to show me it's not healed yet. More time and patience is needed. I have said it before, THANK YOU HEALTH CARE WORKERS FOR ALL THAT YOU DO❤️  

 Originally posted to social media Mar 7, 2024. "To my stubborn Enterocutaneous Fistula , I have a message for you: hit the bricks, take a long walk off a short pier, get lost, time for you to f--k off and leave, no one likes you, move along, I am sick of you, adios amigo. 🖕 Still dealing with this fistula, the liver bile drain is helping redirect the bile, but gas or air is still leaking out the fistula. 30 days no food, TPN IV at night and now a few sips of water. Hope is get me back on some food soon to get more nutrients I need to heal the fistula. I had no idea back in Nov when this leak first developed how hard it is the get rid of these fistula. But on the bright side, things are moving in a positive direction, things could be much worse, and I am truly thankful for great care I am getting❤️😊🙏 An enterocutaneous fistula is an abnormal connection between the digestive tract and the skin. Mine is from the liver bile duct where it joins the small bowel, then...

 Originally posted to social media Feb 17, 2024. 3 month anniversary of the Whipple Surgery . Still struggling with the fistula / liver bile duct leak. Floroscopy early this week helped verify the leak location. Plan has been to try and cut down digestive fluids with medication and TPN IV feeding. Fluids have slowed down, but the Doctors don't think the fistula will heal on its own. This coming week they will send me for another attempt at getting a drain / stent put in place to re- direct the fluid to where it should be going. 3rd time is the charm, and hopefully in 5 days from now it can be done🤞 I have had some really good days, even got my haircut, but very hungry being off food for 11 days as of now. 😩Down too 119lbs ugh. Still feel fortunate to have such a great team of Nurses, staff and techs taking care of me❤️   Leak detected here.     Feb 12, 2024.