DOMAIN 01
Nephrology & Dialysis Visit
Questions focusing on daily treatment burden, recovery time, symptoms, and newer modalities.
Assessing daily burden: What is most limiting my day-to-day life now, and which potentially correctable causes should we assess: recovery time, post-dialysis fatigue, cramping, itching, or sleep disruption?
High-volume hemodiafiltration (HDF): Is our clinic or health system offering high-volume hemodiafiltration? Would my vascular access and clinical situation permit it? What does current trial evidence (such as the CONVINCE study) say about its benefit and burden for someone in my situation?
Home dialysis modality visit: Can I schedule a formal home hemodialysis (HHD) or peritoneal dialysis (PD) modality education visit? What are the realistic space, plumbing, caregiver support, and training backup requirements for my home?
Symptom management & newer therapies: Are my anemia, phosphate control, itching, or catheter-related infection concerns being adequately managed? Would any newer option add value over what I already receive, and what are their specific risks, laboratory monitoring, and insurance coverage?
Personal notes for nephrologist / dialysis rounds:
DOMAIN 02
Transplant Team & Evaluation
Questions clarifying waitlist status, medical barriers, and living donation pathways.
Current waitlist status & barriers: What is my exact referral, evaluation, or active waitlist status today? What specific barriers, pending consultations, or clinical tests remain before listing?
Second center evaluation: Should I obtain an evaluation at another transplant center? How do center wait times, organ offer practices, and insurance network coverage compare across regional programs?
Incompatible living donors & paired exchange: If a living donor is incompatible with me by blood type or antibodies, which paired-exchange programs (such as the National Kidney Registry) does this center participate in? What donor financial protections (such as NLDAC travel/wage assistance) are available before expenses occur?
Sensitization & antibody management: Do sensitization, antibody titers, or previous treatments affect which donor offers are viable for me? What desensitization protocols or research pathways exist alongside standard listing?
Personal notes for transplant coordinator:
DOMAIN 03
Before Considering Any Clinical Trial
Essential questions to ask before enrolling in experimental studies or clinical trials.
Site-level recruitment check: Is this specific local facility actively enrolling patients today, and which inclusion or exclusion criteria require formal clinical verification?
Demonstrated evidence & comparison: What has actually been demonstrated in human trials so far, for how many patients, over what duration, and compared with standard care?
Randomization & failure protocols: What are the alternatives, randomization probabilities, and potential harms? What medical protocol is followed if the experimental intervention fails or causes side effects?
Financial coverage & obligations: Who pays for routine care, study medications, diagnostic tests, travel, lodging, and medical care if complications arise? What insurance coordination is required?
Transplant impact & consent review: What visit frequency and long-term commitments are required? Could participation or antibodies developed during the study affect future transplant eligibility? Can I review the consent document with my primary nephrologist before deciding?
Personal notes for trial coordinator:
DOMAIN 04
Social Worker & Benefits Counselor
Questions covering insurance premium aid, emergency grants, transportation, and peer support.
Premium & grant assistance: Can we review my eligibility for the AKF Health Insurance Premium Program (HIPP), AKF Safety Net Grants, and state kidney assistance programs?
Transportation & peer support: What medical transit, paratransit, or community ride programs are available for my clinic schedule? Can you help connect me with NKF PEERS for patient-to-patient support?
Paperwork renewals & deadlines: What annual paperwork, recertifications, or benefit renewal dates are coming up, and what documents do I need to prepare?
Personal notes for social worker:
DOMAIN 05
Supplements, Botanicals & Alternative Therapies
Questions reviewing safety, drug-herb interactions, and complementary healing modalities.
Herbal & supplement safety audit: Can we review every tea, herbal tincture, and supplement I consume against my latest electrolyte panel to screen for hidden potassium, heavy metals, or known nephrotoxic risks (such as aristolochic acid in unstandardized root decoctions)?
Cannabinoids & enzyme interactions: If I use or consider non-intoxicating Green Tier CBD (for uremic pruritus, restless legs, or sleep), will its inhibition of CYP3A4/CYP2C19 enzymes interfere with my blood pressure medications, blood thinners (warfarin), or transplant immunosuppressants (tacrolimus/cyclosporine)?
Hyperbaric oxygen therapy (HBOT): If I have chronic non-healing wounds, peripheral ischemia, or calciphylaxis, would an approved course of hyperbaric oxygen therapy be safe and clinically indicated, and what antioxidant support is needed to avoid oxidative stress?
Kidney regeneration & trial realities: How do emerging breakthroughs (such as xenotransplantation trials, the implantable bioartificial kidney, or cell-free exosome therapies) relate to my specific stage of kidney disease, and what verified clinical criteria would I need to meet?
Personal notes for nephrologist / dietitian: