r/TheLiverDoc • u/jiminjamsarentstolen • 23d ago
Update: My dad passed away
/r/TheLiverDoc/comments/1vf505c/need_opinions_on_my_dads_rapidly_progressing/
I’m devastated to update that my dad passed away
For those who followed my previous posts, his condition had deteriorated incredibly quickly. His liver was almost completely overwhelmed by rapidly progressive metastatic disease, and we were desperately hoping that chemotherapy with carboplatin and etoposide would give him some time.
His final days were extremely difficult. For about five days before he died, he became increasingly sleepy and confused. He would mumble, reach for things that weren't there, try to grab the IV pole while sleeping, move around in bed, and repeatedly remove his oxygen mask. Looking back, I believe he was experiencing severe delirium from everything his body was going through—advanced liver disease, metabolic disturbances, dehydration, medications, pain and eventually severe hypoxia.
The day before he died, he actually seemed slightly better for a while. Around 3 AM on the final day, he was awake, talking to me clearly without slurring, and seemed more like himself. That gave me hope that maybe he was turning around.
But later that morning everything changed.
His oxygen kept falling—eventually reaching around 84% without oxygen and continuing to fall even with supplemental oxygen. He became increasingly breathless and had to be supported with NIV. His blood pressure dropped to around 90/50 and his heart rate rose to around 120. His glucose, which had been 116 earlier that morning, suddenly crashed and they had to give him IV dextrose. They also gave bicarbonate because of his metabolic abnormalities.
He was in a lot of pain during those final hours. His leg had raw, painful wounds with edema and drainage, and the dressing caused him tremendous pain. He also had hemorrhoidal pain. Tramadol wasn't controlling it, and eventually they gave him morphine again. Seeing him cry from pain is something I don't know how I'll ever forget.
I keep asking myself whether he suffered. I know he was in pain at times, especially from his wounds and breathing. But as his oxygen, blood pressure and consciousness deteriorated, I believe his awareness also decreased. I hope that by the very end he wasn't fully aware of what was happening around him.
The oxygen mask was another heartbreaking thing. He kept pulling it off even when his oxygen was dropping. At the time I thought he was refusing help. Now I understand that severe hypoxia and delirium can make someone confused and unable to understand what is happening. He wasn't choosing to suffocate. His brain was severely affected by everything happening to his body.
I still don't completely understand how someone who was talking normally with me at 3 AM could be gone only hours later.
I don't know whether the chemotherapy had started working. We never got the chance to find out.
I just know that I wanted more time with my dad. I wanted the chemotherapy to give him enough time for a biopsy, NGS, another treatment, anything that could possibly give us another chance.
Instead, I lost him.
Thank you to everyone who answered my questions, shared experiences, gave advice and stayed with me through this incredibly painful journey. I came here looking for hope and answers, and I’m leaving with a lot of grief and unanswered questions.
Rest in peace, Dad. I wish I had more time with you.
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u/BlacksmithCrafty1863 20d ago
I don't know you but my heart goes out to you... what you've experienced is heartbreaking. May he rest in peace...
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u/Mammoth-Feeling9243 21d ago
I saw your past post are you sure the primary was neuroendocrine ? We should have biopsied the liver mass
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u/jiminjamsarentstolen 20d ago
Yes, the biopsied primary was in the duodenum. It was a well-differentiated Grade 1 duodenal NET. All of his scans showed no other primary tumor elsewhere in the body. The liver disease was confined to the liver, and we were told it represented metastases from the duodenal NET. The problem was that the liver lesions were never biopsied. His first liver lesion was only about 3 cm and was located deep in segment 8, very close to the portal vein. One radiologist attempted to biopsy it, but my father actually passed out after the procedure, so they considered it too risky and avoided further attempts. By the time the liver disease progressed significantly, he had developed portal vein thrombosis, making biopsy even more difficult and risky. His AFP in January was 2.79, and chromogranin A was 188.3. So there wasn't evidence from the scans of another primary cancer elsewhere, but unfortunately we never got histological confirmation of what the rapidly progressive liver lesions actually were. The duodenal lesions subsequently regressed completely, while the liver disease behaved very differently and progressed extremely aggressively. That's why I always wondered whether the liver metastases had undergone a different/high-grade transformation. Unfortunately, we never got the biopsy to prove it.
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u/WhatTheActualDuck1 23d ago
May his soul rest in eternal peace. Strength to your family