July 6/23
🍁 I’m M D D (this 'what works' for just one peer and their specfiic VHL problem areas)
■ Medications
■ Diet
■ Dialysis
I “worry” about my daily mission. I have realistic short and long-term Goals. I’m an active manager of my treatment plan and continue learning all I can. The more proactive I am, the more control I will feel over my life with kidney disease (zero kidneys) - a part of my VHL Syndrome at my age/stage in life. Transplant will be just another really good treatment! *
I am responsible for most of my day-to-day decisions regarding my health.
Medications
Daily 3 at home (e.g. blood pressure, depression/anxiety). During dialysis, I get medications (e.g. EPO, iron).
Diet, Fluid Intake and Healthy Goals
Daily high quality protein. Low budget, daily food is priority.
(Monthly blood test, e.g. electrolytes, wastes, hemoglobin. Daily weight, e.g. 1 L per day fluid gain)
Dialysis Access and dialysis as a treatment and Lifestyle
Life-line. Daily assessment of fistula, e.g. me (and RN). Steps for care and protection, e.g. don’t take BP on same arm).
(Also quantity and quality of, e.g. don’t miss any time! Learn about main side effects and warning signs).
-Exercise. Mobility. Stress management and coping, e.g. Post-structural / post-modern mental and behavioural stance. Use professional experience.
-Organize other appointments and surveillance, e.g. keep schedule and notes, there other tumour areas)
*adapted from kidneyschool.org
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