Calciphlyaxis
To answer this question, I will have to take the diagnosis of calciphylaxis, on face value, as correct. Calciphylaxis can be a complex diagnosis to make - and I wonder if she has had a skin margin biopsy which, while not always giving certain confirmation, often helps to confirm what is commonly a clinical diagnosis. That said, I will answer this question on the assumption that the diagnosis of calciphylaxis is accurate.
I have no information regarding the current level of - nor of the serial levels over time of - the serum calcium or phosphate … nor of the PTH levels and a whe lot of other data which has to be considered in both her diagnosis and her treatment. But, the first observation is that she is on warfarin. Calciphylaxis has been often linked to warfarin therapy in dialysis patients (and there is a good argument to avoid warfarin unless it is absolutely unavoidable in patients on dialysis. There seems little doubt that calciphylaxis is seen more commonly when patients are on warfarin. That said, I understand why she has been taking warfarin (she is in AF and has had a relatively recent DVT) though, now that this has happened, there might be a good rationale for converting her to something like clexane while simultaneously trying to treat and improve her skin lesions.
Hyperbaric oxygen has been used, as has intravenous sodium thiosulphate - both with a number of anecdotal reports of success. When I use the term ‘anecdotal’ … that is not because I am suggesting these are not useful treatments, but because there are no large trials (to my knowledge) which confirm their beneficial outcomes and the reports of success are limited to case studies and case reports. IV sodium thiosulphate is, as I would see it, perhaps the best way to go (assuming the diagnosis is confirmed) while trying to get her off warfarin and onto something like enoxaparin (clexane) for the duration of healing if ongoing anti-coagulation is deemed essential.
Meantime, optimum control of her phosphate is needed - and it is good to see her off calcium-based phosphate binders and onto non-calcium based binders … be it sevelamer (Renagel) or lanthanum (Fosrenol). Either (or both) would be OK in this circumstance. In terms of optimum PO4 control, she also needs optimum dialysis. While I do not know her PD clearance data but it is possible that additional or temporary conversion to long, slow, and frequent HD to maximise her calcium and phosphate control might also help.
Pain is common with calciphylaxis and needs good control too. Here, in Australia, we (the nephrology teams) recognise that we are not as good at pain management as are the acute pain management clinics and teams. These teams have specialist pain management skills and a really nice feature in Australian hospitals. Here, we would seek the early involvement of the acute pain team. I do not know whether such access is available to your nephrology team but we have learned that no-one can be jack of all trades and that the specialised care of pain is just as complex and intricate as the specialised care of dialysis. As such, and if you have that access, referral for pain management might be helpful.
So, in summary, I’d be seeking to stop warfarin, use alternate anticoagulation if essential, consider high potency dialysis (eg: long, slow, frequent HD), use IV sodium thiosulphate +/- hyperbaric O2 (if available), avoid calcium-based binders and use either (or both) of lanthanum and sevelamer, and refer for pain management.
Regarding transplantation, it sounds that it would be wise to take this off the agenda - at least till this is all resolved. Whether, later, she is able to be reconsidered as a candidate for transplantation, will be entirely up to the transplant team there, on the ground, at your service