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...

 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.  

 Originally posted to social media Feb 7, 2024. I was readmitted on Jan 28, 2024 after developing a larger opening in the fistula, incision and more complications .  "A mix of XRay, MRI, and CT scans, still trying to sort out the leak from my incision. They found the leak, Liver bile duct. They tried to insert a stent/ drain in to control the leak and let things heal, but weren't able to. A second attempt was booked but canceled as there is a blood clot in the left portal vein of the Liver, also air and the bile duct is in flamed. So plan is to hopefully repeat the stent/drain insertion in 3 weeks. Till then they will take me off fluids, food, and try shut down the digestive system see if the bile leak slows down and heals. Fingers cross 🤞."   Feb 2, 2024.   Jan 30, 2024.

 Originally posted on social media Jan 26, 2024. "Does it every feel good to be back home for the first night in 10 weeks. I love the tiny little slice of the Universe❤️ Update, 10 weeks post Whipple Surgery still have a active leak in the insecion, it's slowing down. Surgeon is hopefully it will heal up with out more surgery and so am I 🤞 Started taking pancreatic enzymes to help with digesting food. It's a learning process of how much and how often to take the enzymes. Now I am taking them every time I have anything to eat. Need to try and start putting on some of the 24lbs I have lost"  

 Originally posted to social media Jan 13, 2024. "Still not at my place yet (pictured above) , but 1 week out of the hospital after a 7 week hospital stay following Whipple Surgery . Staying at friends place until I get a little more strength. A Stubborn incesion leak (pancreatic enzymes /juices) requires daily attention, along with trying to eat small amounts of food more frequently is filling my recovery days. Slow steps forward but getting better all the time👍 Thank you❤️ House monitoring and Picture by @treeonme Recovery accommodations @cheryl.sharp.982 @8lack_8art " Jan 2024. Dreaming of getting home soon.

 Originally posted on social media Jan 6, 2024. "Long over due updated. On the 7th week anniversary of the Whipple Surgery I finally got to walk out the door of Foothills Medical Centre in Calgary. I can't say enough about the wonderful amazing AHS staff that took care of me. The health care workers are the best people we have, they take care of us when we need them the most. Thank a health care worker you know or see for me❤️❤️❤️ I am still dealing with a stubborn infection of the Incision, and have a another drain that needs care. Home care is taking over my care now. Today I felt OK, so figured I could go to the store to get my prescription filled. It took everything I had just to walk across the store. By the time I got to the pharmacy I was done. I had to take some extra strength advil off the shelf as I waited. I realized I hadn't taken any pain meds for well over 9 hrs. Thankfully a good friend, Kevin, was there to help me. I know I have to lean on fa...

 Originally posted on social media Dec 22, 2023. "Santa stop by and dropped off this cute Teddy bear. Week 5 post Whipple, slow going letting things heal. CT scan today showed fluid pockets, and drain out puts are down. More time needed but heading in the right direction. One more CT scan ordered to rule out a small clot near the lung, and help explain chest discomfort. If there is one the Medical team will increase blood thinner. Good thing I have lots of time, so will take it slow and steady on the road to recovery."   Dec 22, 2023.  

 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.  

 Originally posted to social media on Dec 12, 2023. "NG tube is gone, back to how things were on day 8, post surgery, but really it's day 25. Things went sideways, but getting back on track. Still 3 drains, only one is very active, the other 2 have slowed down. Plan is nothing by mouth today, let system adjust, walk as often as I can, and if all goes well sips of fluids tomorrow. Once I start sipping fluids they will watch closely to the active drain and see if it's output picks up, if so that may suggest a fistula, and require repair down the road. I am feeling stronger each day, it's a slow slog but all the positive vibes are helping. Thank you."   Dec 12, 2023.   Dec 11, 2023.  

 Originally posted to social media on Dec 5, 2023. "Day 19th, post Whipple Surgery. Things are going along smoothly, no great ups and downs, just some what of a even ride. Last week I had my first CT scan , and it showed a few pockets of fluid. Drains and meds were engaged to help treat these. On this past weekend, bloating, and pain started to return, even with 3 drains still drawing off fluid, pressure was growing. The medical team decided to send me for another CT scan. It showed another big pocket of fluid. Monday a new drain was installed to help. It drew off 450ml of fluid before I left the procedure room. Today was more of a spa day. Thank you @maureentowns for the fancy nails"   Spa day Dec 5, 2023.   Dec 5, 2023.

 Originally posted on social media Nov, 21, 2023. "Things are progressing as planned the hospital staff tell me. There have good and bad days. Ups and downs, but moving to a new room today kind of points out a upward trend. Days have been filled with visits, medical stuff, bath time, walking, mild hallucinations costumes parties, and lots of naps. Few pics of what is going on. I Love all the positive vibes it has made a world of difference, spread positive energy."   I got to dress up in different costumes.   My Happy flag view.

  Originally post on Facebook and Instagram, an updated after the first night post Whipple Surgery , Nov 18, 2023. "The day started a little rough. The epidural had a problem controlling the pain in one spot. Things are better now and they even had me out of bed. I was feeling weak but glad to be up even for a short time. Small victories eh. Hope" Nov 18, 2023. Nov 18, 2023, proud to be standing. Nov 18, 2023 updated after the 1st night post Whipple.