Systemic inflammatory response

Hi

I was diagnosed with hilar cholangiocarcinoma in May 2024. Initially considered a candidate for resection but the liver remnant failed to grow. Fast forward to October 2024 that despair was replaced with joy when I received a liver transplant.

My liver transplant report confirmed the cholangio was Stage 2A with no evidence of lymph node or mets. Perineural invasion was seen. The cancer comprised of adenocarcinoma, spindle cell morphology and plemorphism.

All went well until January 2026 at which time I developed hypertension, fever and fatigue. Hypertension took time to resolve and necessitated two medications. Candesartan 16mg twice daily and Amlodipine 10mgs daily.

In March 2026 I developed extremely high urine albumin levels and extremely high urine creatinine to albumin levels. Levels subsequently reduced over a 6 to 8 week period. Cause for increase was never investigated.

At the same time my potassium levels increased and could only be controlled by Resonium powder. I was commenced on 30mgs daily. Potassium levels were well controlled on this daily dose for several months.

In March/April daily fevers remained. Repeated scans including to assess for vasculitis completed - all negative. All scans were clear
In early May 2026 I switched from Tacrolimus to Everolimus due to the development of 12 high risk SCCs - two of which required radiotherapy due to perineural invasion. (I had 15 radiotherapy sessions to both my mandible and temple in June 2026)

Mid May I developed a plaque like rash on my neck and chest which required high dose steroid cream to resolve. At the same time I developed an unusual nodule/lump in the base of my belly button that intermittently becomes reddened/inflamed and crusty. Wound swabs grew staph aureus so I have been prescribed oral antibiotics. However, the lesion improves before returning. It hasn't changed in size and looks quite innocuous so I am not concerned it may be anything other than a sore.

Late May/Early June I developed pustules on my skin. A Rheumatologist arranged biopsies. The biopsy results showed high levels of eosinophils.

In June, the fatigue became debilitating, I went from being able to walk 3 to 4 kms each day without issue to being unable to walk 500metres. This was due to fatigue not physical ability.

The fatigue has not resolved and has in fact worsened over the past few weeks - some days I struggle to shower - noting bending forward to attend to personal care seems to make the fatigue worse. I do have some good days.

Early July I developed 3 days of non stop hiccupping that was only resolved with IV Largactil. At the same time I began belching and burping more - I couldn't control the urge to belch. This has improved recently but comes and goes.

Since March my bloods have demonstrated ongoing chronic systemic inflammation. My ESR rose to 200 in April, now currently sitting at 100. CPR was initially normal, but now sits at 32. My haemoglobin has dropped to 97. I have elevated haptoglobin and abnormal c3. GGT began to rise in June and has remained high (but fluctuates). Other liver enzymes fluctuate but remain within the normal range. Interestingly, my urine albumin and urine creatinine/albumin ratios have become high again. I have low bicarbonate and my renal function has declined - I now have stage 2 to 3 renal failure with no known cause (although to be fair I had two episodes of sepsis due to biliary occlusion pre transplant which probably didn't help). Recently my phosphate levels dropped and oral phosphate was prescribed. However, 4 weeks after treatment levels are once again dropping.

Interestingly, my potassium level has taken a sudden, recent, drop and Resonium was ceased. It was recommenced a few days later when blood potassium levels began to rise. However, I now only require 15gms three times per week.

In July 2026 I developed tachycardia. My average resting pulse sitting at approx. 95 bpm. In early August 2026, I developed orthostatic hypertension with significant decreases in systolic BP reading and compensatory tachycardia - pulse becomes suddenly elevated, with readings between 126 and 135 bpm. Orthostatic hypertension resolves after 5 minutes or so. I am symptomatic as I experience dizziness on standing. All anti-hypertensive medication has been ceased.

On 29 May a PET/CT scan showed ground glass opacity on both lungs and a bronchoscopy was arranged. Bronchoscopy washings were free of malignant cells but showed high eosinophils (42%).

Interestingly, blood eosinophil levels have fluctuated but have consistently remained within the normal range.

My appetite comes and goes and as a consequence I have lost 5kgs in the last month. This could have been the reason why my albumin and globulin levels have fluctuated - albumin shifting between normal and low/globulin shifting between normal and high.

I have been seen by various specialists all of whom agree I have a significant system inflammatory response but no one knows why. All infection and auto-immune screening has returned a negative result. The only unusual and consistent result is a weak positive PL7.

My bloods currently demonstrate hyperthyroidism, however specialists have said this is due to contrast dye from a recent CT.

CA19.9, bilirubin and CEA are all normal. Bilirubin spiked in March but resolved immediately. CA19.9 and CEA remain normal but have trended upwards.

There is no evidence of cholangio recurrence but it's difficult to shake the feeling that whilst I have so many bodily systems affected by a system inflammatory response that no one has been able to diagnose has me concerned.

Any ideas? Has anyone experienced anything similar>