Hi fellow kidney community. Has anyone ever experienced doctor or dialysis tech or actually any nephrology team burnout in their patient care? If so, would you mind sharing your story? In my experience of 11 years dealing with this disease, I have dealt with many issues related to burnout. I feel like the nephrologists at my dialysis clinic are numb, hardened, immune to the great amount of suffering. We tell them our problems and they handle it like its nothing. My NP said to me, "oh it's not really THAT bad is it?" When I said California has the longest waiting list for kidneys and young people really suffer more years waiting for a transplant because we miss out economically in our careers. Thats just one example. The district manager just cares about her numbers that medicare holds the clinics accountable for. I sat down as a patient advocate and I also wrote a proposal of 3 ideas that would make us patients do better emotionally and physically. One request was to hire a competent experienced social worker who is certified in dialysis patient needs. She drilled me for precise examples of what patients are complaining about. She said in the end with attitude of cruel de Ville, we don't have the budget third another social worker. I suggested the current one be re-trained, especially in educating patients about the transplant process. As she doesn't seem to know the most basic education. She said they only have resources for 1.6 equivalent hours as required mandatory by the state. No empathy or efforts to listen to patients needs. Many doctors spend 3 min per patient once a month and I see my medicare segments get charged $467. for those 3 min. I ask questions and try to maximize my visit, but I feel the doctors run away. I ask deep questions. I ask about new innovations that will help me. I push for answers. I want to learn about my health. It's a serious overwhelming disease. My family I feel distances themselves from all the info. Its hard on them too. And not much has changed in the 6 years I have been waiting for my transplant #2. It hurts them too waiting and seeing me suffer so much. As for the techs, some are overworked to the bone and severely underpaid. At my clinic they start at 14$ an hour. They are in debt 5K to Fresenius PCT school and the tuition gets taken out of their paycheck. Min wage in San Diego just got raised to $12.00 an hour. So new techs are basically making 2$ above min wage. They work long hours and have to take a second job. I'm sure dealing with such a critically ill patient and all their social services needs, and listening to their suffering, they just wall off. Its a coping technique. I get it. The only cure off of dialysis is a transplant. But in California its 10 years at least. Thats like having cancer for 10 years. Innovation hasn't changed in 60 years, its super expensive and time consuming, taxpayers are paying dialysis costs through medicare. The movement to get a transplant is so slow, lawmakers aren't doing enough, SSDI and SSI pays far below poverty rate, people cant work, insurance companies never want to pay for medicines, Healthcare premiums are more than rent, people really are suffering badly. And we are too weak to fight for what we need. A fe people can but not if your diabetic, amputee, and very sick.
Does anyone have any similar experiences? Feel free to share your story. Thank you and I sincerely hope things get better for everyone!