How will my dialysis treatments affect my daily activities?
I am a 54 year old retired teacher who has lived with lupus since the age of 14. At first, my condition was controlled with medication, primarily steroids. When the condition was under control, the medications were scaled down. I have lived a very full life, married, had 4 children, coached little league, taught elementary school for 30 years and completed all the course work required for a doctorate. I retired when my doctors saw that the scar tissue on my kidneys was deteriorating my kidney function. I am now on dialysis 3 days a week and taking several medications. How will this affect the quality of life I have maintained for the past 40 years?
It sounds like you have lived a great life while managing your systemic lupus erythematous. Hemodialysis three days a week (the usual frequency) can significantly affect one's life in several ways. First, hemodialysis, as you know, takes 3-4 hours per session 3 days per week. This is a significant time period that most people would rather be doing other things. Secondly, some people feel quite tired after their hemodialysis session, while others actually feel better. Depending on how hemodialysis affects you, this may be more time that is "taken away" from activities and things that you'd rather be doing. Finally, depending on the vascular access that you have (fistula, graft, or tunneled venous catheter), some activities may be limited. You could imagine that getting a tunneled catheter caught on something could be quite painful and messy. This also provides a portal for infection. Despite all of these things, most hemodialysis patients end up living very full and productive lives with minimal limitations other than the time commitment. I do recommend that you contact your nephrologist to have a frank discussion about hemodialysis and how you can best maximize the activities that that you wish to pursue.