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u/AnnesleyandCo

▲ 3 r/infectiousdisease+2 crossposts

Previous fungal bloodstream infection (candida parapsilosis) connected to AFB positive wound?

Primary issue: Positive AFB sample ~36 hours out from excision/debridement of chest wound. Wound is located at site of old port; port was removed due to it causing a fungal bloodstream infection that almost killed me. Are these things possibly related?

I’m Day 1 post-surgical excision/debridement of a big fistula/wound on my chest, at the site of my previously-removed port.

Details on what was happening pre-surgery in a former post; I’ll link in comments.

It’s only ~36 hours since surgery and most of the tissue samples/cultures obviously haven’t resulted yet, BUT the Plastics resident just told me that a sample from the fistula is positive on an “acid fast” (?) test. She said “AFB positive,” and that ID is following/will come by tomorrow/soon.

Can anyone explain what that might mean for me? I know that TRUE answers will come from my team/ID/etc. after the cultures grow/show what’s in there… but those can take awhile and I’m so curious. This wound is over the site of my old port, which was removed after it got/gave me a fungal bloodstream infection (Candida parapsilosis) during a hospital stay in 2024. The fungus took up residence in a massive right atrial thrombus I had (thanks to Behçet’s) and the combo very nearly killed me.

Could this positive AFB situation be remnants of that same fungal infection? Or does AFB only show bacteria (not fungus)? Any idea what this will look like for me?

Of note, I have CVID, have taken a variety of biologic meds (currently Rinvoq, Otezla) over the past decade, and rely on high-dose steroids to keep my MAGIC Syndrome in check (aka keep me alive). So I’m essentially the poster child for both primary immunodeficiency and immunosuppression due to medications.

Thank you to anyone who can sketch out even a tiny bit of what this might mean!

- Age: 34 AFAB (NB)

- Height: 5’11”;

- Weight: 180kg

- Nonsmoker

- Complex medical history. MAGIC Syndrome (Behçet’s + Relapsing Polychondritis); CVID (on IgG replacement); HFpEF; CTEPH; steroid-induced DM2; VTE (right atrial thrombus, repeat PE’s).

- Rinvoq, IVIG, long-term/high-dose steroids (methylprednisolone), Warfarin, Azathioprine, Otezla, etc.

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u/AnnesleyandCo — 6 days ago
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“Have a moment to discuss on Long & Savior?”

Wallace 🥰🥹 he looks like the most earnest dinosaur 😭💜

u/AnnesleyandCo — 10 days ago
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u/AnnesleyandCo — 11 days ago
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u/AnnesleyandCo — 11 days ago
▲ 766 r/sonarears

Our bestie’s dog, Judy, is staying with us for a bit. She’s the mayor of the dogs in the household (and the people, honestly… she’s just in charge and we all know it). She’s ~9lbs, most of it in the ears.

u/AnnesleyandCo — 25 days ago
▲ 2 r/woundcare+1 crossposts

- Age: 34 AFAB (NB)

- Height: 5’11”;

- Weight: 180kg

- Nonsmoker

- Complex medical history. MAGIC Syndrome (Behçet’s + Relapsing Polychondritis); CVID (on IgG replacement); HFpEF; CTEPH; steroid-induced DM2; VTE (right atrial thrombus, repeat PE’s).

- Rinvoq, IVIG, long-term/high-dose steroids (methylprednisolone), Warfarin, Azathioprine, Otezla, etc.

**Main question: what is happening to my former port site?**

tl;dr:

Port site has solid mass the diameter of a tennis ball. Has ruptured ~20x in 4.5 months, discharges blood/pus, fails to heal. Many small “pockets” and tunnels/channels. 3 failed I&Ds.

Full story:

Port removed in 10/2024 during open heart surgery; I’d grown a *massive* blood clot (last photo) in right atrium/SVC.

11/2024, the skin ripped open and a surgical clip they’d accidentally left inside forced its way out (oops). Healed by 2/2025.

For the next 10mos, there was a rock-hard, gumball-sized lump under the skin. In 10/2025 it started growing. Ultrasound in 12/2025 showed “small fluid-filled anechoic structures… of unknown etiology/significance.”

Around NYE, a hole ripped open over the site, discharged lots of pus/blood. Since then, >20 different holes have opened/closed. Some explode and pour stuff out, others are less dramatic. The discharge does not culture positive for anything specific.

2nd ultrasound (1/2026) showed “inflamed dermal and subdermal tissue… Within [which] are thin interconnected branches of fluid that are partly within the skin and mostly deep to the skin, extending posteriorly.”

I’ve been punted from derm to general surgery to breast surgery to derm surgery. We’ve tried I&D 3x, but the different “pockets” are too confusing/walls too thick. It’s now the diameter of a tennis ball under there, they think it needs to be excised fully (“scooped out like an ice cream scoop”) and I’m being sent to plastics.

It’s so painful, it’s disgusting, it’s an infection risk, and I’m so done.

Any thoughts on what the hell is happening here? Have you seen a surgical site do this? Why are there tunnels/channels? Why does it rupture? Is surgery the best option?

I have a short-ish prognosis (couple years?) and surgeries generally take time off that… but if they can drastically improve QOL during time left, I’ll do it.

u/AnnesleyandCo — 19 days ago