By Anna Bennett
Hello, this is Anna guest blogging - again. During a recent e-mail exchange, in sympathy to my current situation, Bill posed the question: "How much are we supposed to put up with? When is enough enough?" I've been thinking about that a lot over the past couple of days. It is a good question, and it begets even more questions - what is our relationship with our dialysis providers? When are we the customer and when are we the patient? Are the two interchangeable? How demanding can we be in regard to customer service? What recourse do we have? We know that dialysis is a matter of life or death, without it we would die. But "How much are we supposed to put up with? When is enough enough?"
The toughest part of home hemo for me, has been the orchestration of supply delivery. I live alone, in NYC and I work a full time job m-f, although I live less than 10 miles from my office, it takes over an hour to get there via subway. I get two week-day deliveries a month. One delivery is from Fresenius with my medical supplies, syringes, saline, tape, gauze, chux etc. And one delivery from NxStage, cartridges, saks, dialysate (if needed) pure paks, warmer bags, drain lines etc. I've been having very well documented problems with my NxStage deliveries, which has caused a lot of stress. Stress that I could certainly live without. But it is still better than dialyzing in-center.
If I think of Dialysis as a part-time job, then I have a better perspective. NxStage are my vendors, and right now, we are having delivery issues, but I am in this for the long haul (or until I get a transplant). Delivery screw ups aren't a life threatening situation, I have my unit for backup, but it sure is annoying and stressful. I've found that for me, I have to step out of the patient/illness mindset. It gives me a more critical eye when dealing with my unit which provides a service, my vendors which provide my supplies, and my insurance company which funds my home hemo night job. How far is too far? Well, delivery issues or not, I'm not stopping home hemo. So, I live with it. I call and complain when necessary, I vent on the internet. So my answer for today to Bill's question is that my limits have been tested, but I have no real recourse, just raising my voice and being heard - hopefully opening up a dialogue - that is just basic conflict resolution. I never want to be a passive patient. I too, am a dialyzor.
Comments