u/WormmeFatale

Another Post-Whipple Complication (chills/fever explained)

My mom (69f, stage 1, post-whipple) was hospitalized less than one month ago for an abscess that had formed in the post-Whipple surgical bed due to a small leak in a surgical connection. The symptoms that led to her ambulance ride to the ER included chills, involuntary shaking, fever, elevated heart rate, confusion, thirst, fatigue.

They treated the abscess with IV antibiotics. The surgeon had already opened up the incision a few weeks prior to allow the fluid to drain. (Please see my older posts for more detailed info).

In addition to the abscess, the CT scan had showed that necrotic tissue and inflammation were pinching the SMV.

When she was discharged from the hospital they prescribed oral antibiotics for 14 days. About 2 hours into our drive home from the hospital she had yet another episode of chills, fever, etc. I wasn’t expecting the episodes to continue after she received treatment and was discharged, so I called the surgeon who simply said, “it doesn’t sound like a change in her condition”. He believed the episodes were an inflammatory response to necrotic tissue.

Upon arriving home she was constipated for a few days and then began having loose stools.

During the follow-up visit the surgeon noted his concern regarding the pinched SMV and prescribed blood thinners. He was confident that the leak would continue draining from the open incision and heal itself. He informed me that he had intentionally packed the necrotic tissue there to protect healthy tissue in case of a leak at the connection site. He also instructed my mom to increase the amount of Creon she took with food hoping it would alleviate the loose stools.

Over the next 2 weeks the drainage slowly stopped. The wound looked very healthy and was healing nicely. But my mom continued to have episodes of chills/fever followed by extreme fatigue; her fever hovered around 99/100 and resolved with Tylenol. The surgeon still wasn’t concerned as her bloodwork continued trending in the right direction.

My dad and I started becoming suspicious that she was experiencing cholangitis, or “whipple attacks” minus the pain.

Over the past week the episodes increased in frequency, and the fevers began spiking to 102/103. Yesterday morning she experienced two back to back episodes and also had profuse diarrhea.

I called the surgical team, detailed the changes, and requested they order more labs, hepatic function panel testing, and a stool sample to test for C. Diff. Due to the higher temperatures of the fevers and increased frequency of the episodes they instructed us to go back to a local emergency room.

My poor mother was so upset when I told her we had to go back to the ER. I told her (essentially lied to her in hindsight which makes me feel pretty bad) that they probably would just run tests and send her home. I was hopeful I guess. Alas, she was admitted.

Concerned about sepsis, the local ER put her on IV antibiotics immediately.

This time the CT scan showed an infected clot in the SMV/Portal Vein (Septic Thrombophlebitis), shunting of the liver, and colonic thickening - later she was able to produce a stool sample and tested positive for C. Diff.

This morning she was transferred back to the hospital where she had the Whipple…she arrived about an hour ago. My dad and I are currently on our way out to see her now.

At the moment my relief about finally having some answers is overshadowing any negative emotions I have about the situation. I’m feeling hopeful that the medical team knows exactly what’s going on and will know how to treat it. The mystery episodes of chills and the toll it was taking on my mother were really hard to watch, and I was beginning to fear it was a new normal for her.

Of course, I know nothing is guaranteed with this disease and the recovery from such an intense surgery. As scary as it all is, at this moment I feel it’s going to be okay.

Now for the time being I just need to try to keep her spirits up.

Will post updates regarding progress and treatment.

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u/WormmeFatale — 2 days ago

After over 48 hours in the local emergency room where they withheld food, pumped her full of fluids and antibiotics, gave her a blood transfusion, and kept her fever at bay with Tylenol, she was finally transferred to New York Presbyterian Saturday around noon. My dad and I followed the ambulance down.

Once she got to NYP they ordered another CT scan. It showed a lot of necrotic tissue, and inflammation contributing to narrowing of the SMV, but no longer a collection of fluid or air, so they determined there was no need to insert a drain. They continued her on lactated ringers and IV antibiotics (but increased the dosage) through this morning. They put her back on solid food yesterday (Sunday) at lunch. She ate very small amounts of food but was able to tolerate it well. She didn’t spike a fever or have an episode of chills again since Saturday morning.

I wasn’t able to speak with a doctor or resident at all yesterday which was frustrating, but after annoying the nurses enough they found me a different resident who passed my number along. My dad and I headed home yesterday evening.

A resident did call me twice this morning (Monday) to give me a detailed update and answer my questions. They felt that all of her labs were trending in the right direction, and that her liver function didn’t indicate there was any cause for concern, but they will continue to monitor everything (we have a follow-up with the surgeon on Wednesday). And with that (and a successful PT session) she was cleared to be discharged!

She’ll continue a course of oral antibiotics at home. They instructed me to continue cleaning and repacking the open incision once daily, and provided us with a special hypochlorous acid wound wash called “Vashe”.

Based off of my understanding and the summaries of the scans it seems possible the abscess (I think that since the antibiotics were able to resolve the issue it was technically a “phlegmon” rather than a true abscess) was caused by a small fistula that was able to heal itself back up, though no body said for certain what may have caused it.

I think a combination of her being mostly bedridden, the amount of fluids she got, and the overall post-surgical mess contributed to not just her abdomen, but her entire lower body getting visibly puffy. We’re going to keep a close eye on her temperature, and make sure the swelling in her abdomen and legs goes down over the next few days.

So after a pretty stressful and scary 4 days my dad and I headed back to NY to bring her home again. She looks great, is in good spirits, and was able to walk out with assistance from a walker! I know it was traumatic and difficult for her - so many infusions and blood draws and not seeing daylight made my heart break for her. I’m so grateful it wasn’t more serious, but of course I’m wary of the what the future brings.

I’m so sorry to those of you who’ve experienced more complicated or worst-case scenario versions of this. My love goes out to you all. Stay strong and take it one day at a time. And don’t hold back when it comes to asking questions or demanding care. That’s been one of the hardest parts for me (31F), as someone who absolutely hates confrontation or inconveniencing others…I always try to be as kind and diplomatic as possible but sometimes it’s necessary to be a bit more assertive. In that way I’m growing and changing a lot through this.

Thanks for reading. More updates to come.

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u/WormmeFatale — 25 days ago