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!
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Minyminuskidney
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I am sorry that you are going through this. It is bad enough to have kidney disease and then feel like no one cares. I lived in two different states with my kidney disease.
The first state was Ohio. I was a patient with DeVita Centers in Columbus. They were awesome. Very helpful, friendly and really cared about me. Patient to caregiver ratio was great and the counselors went beyond on anything I needed. You can tell they trained their caregivers well because everyone was happy with their job. They also have a great website for information, recipes and they have an e-tool to track your numbers. You don't have to be a patient to use their website. I still use it even though I'm no longer a patient with them. I find it very useful when I have questions and can't ask a doctor right away. I would recommend them if you have a center close to you. They will also help you to find a nephrologist that might fit your needs better. They also helped me transitioned when we moved to a new state.
Now, I live in Missouri. We have a Fresenius Center near by but not a DeVita. I didn't hear very good things about the center here so I went with a private dialysis center that is affiliated with my hospital and doctor. Again, because I went with a private center, I am getting great care. That maybe an option for you also. Call your local hospitals to see if they have an dialysis center affiliated with them. Private centers usually have a smaller clientele so it make easier for you access a caregiver and a doctor. Which in turn gives you more time to ask your questions. I always have a hour appointment with my caregiver and doctor. You can't get anything done in three minutes. It should be covered by your Medicare and/or private insurance. You may have to a little research to find the right one.
I wish I could say that SS and Medicare was as great of an experience as my healthcare but that situation was very frustrating to say the lest. When I was in the Army I found out I had Polycystic Kidney Disease. I was 22 years old at time and just finished my first year in the Reserves. Much to my sadness having PKD ended my military career. I had a three year ROTC scholarship, the Army paid for my all college expenses and because I only spent a year in the Reserves, when I got released Army officials told me I couldn't claim any benefits in exchange for my schooling. I went on to work in banking for 30+ years. March of 2018, my kidneys tanked hard. My GFR went from 38 to 20. My doctor starting getting me ready for PD. Then in October of the same year I tanked again and went from a GFR 20 to 13. I was so tired from tanking I couldn't get out of bed most days and I was sick to my stomach all the time due to the size of my kidneys pushing on my stomach. I had a great job and loved the people I worked with but I started to miss a lot of work. I was having a hard time remembering, started to make a lot of simple mistakes, asking the same questions over again and getting sick to my stomach at the office. Not good in banking. The people I worked with tried to help me but my health was getting in the way. I had to take a leave of absence and started the process to get on SS. After a couple of months SS came back and denied my claim stating that I could still work. I had to get an attorney. After another six months of fighting with SS we was able to get a hearing. When I went to the hearing I had to prove I was on dialysis in order to get my benefits. By this time, my kidneys were about the size of a football each. I gained 100 pounds in less than a year from the size of my kidneys and from all the fluid I'm holding. My attorney had to push that fact in order to get my benefits. It was a mess but I finally got approved. My attorney basically got my back-pay which left me with very little of my first check. Thank you SS for expense and frustration. Then another shocker. My benefits each month didn't match the years that I worked. SS used to average your wages over your highest earnings and the average years you worked which in turn gave you a decent check to live on. I don't know when the rules changed but now SS only goes back 15 years to which I got screwed because we moved to Missouri and their wage rate is much lower than Ohio. If SS would of counted my wages and years working in Ohio, I would of been bringing the same or a little more than when I was working on the average scale. It would of been enough to live on. Now, I'm just getting into the drug side of it. One of my medicines is $395 a month with part D. That is almost half of my monthly check. Private insurance won't cover this medicine and if I had to pay out of pocket it would cost $1,990. My counselor is trying get me financial help but I'm not holding my breath. I told my doctor if I have to choose feeding my kids and taking that medicine then I'm to feed my kids. I can't claim any military benefits or VA help either. I get the frustration and I haven't even got to transplant yet. Just got on the list this February. We will see how that goes.
So, my friend hang in there. It's not just you going through this. These forums are great for venting sometimes. DaVita also has a great forum. I wish you all the best. I hope this helped.
Just amazing your experience! I am so sorry for you being jerked around by SS. Yes it takes 6 months at least for medicare and medicaid to kick in. Im so glad you have a lawyer! I waited tables and have been working age 15-26 most of that time I was a full time college student. So I got screwed too in my check as they didn't make you claim all your tips back then. So my income was low, basically minimum wage. I feel I got screwed too. Its especially hard in San Diego. The average cost of a 1 bedroom is $2800.
Does Your state have Medi-cal? And I assume there are no generics for that drug? The actual drug company usually offers charity benefits to people who cant pay... Im sure your going that route. Yep not surprised by SS as I have been told they deny everyone just to weed out the fraud. If your already on dialysis, then yes you automatically get ssdi/Medicare. But a doctor has to sign the forms as proof.
Thank you for all your kind words and support! I am there with you too. Suffering in solidarity. We can get through this together. Also your state should be paying your medicare premiums. It is 135$ a month out of pocket. By state I mean Medicaid.Its so extra confusing with insurance, I am going through stuff right now. Trying to get My state to pay for dialysis in Arizona for 3 treatments. Arizona rejects it. So stupid. We need one easy system.
Im here if you need me on this platform.
Message me any time, and yes focus on getting that transplant! That is your goal. Consider listing at many different places too and finding out your antigen level.
Yikes! $2800 for a 1 bedroom. I can't imagine. Here in southern Missouri a 2 bedroom is about $550. Now I see why a lot of people from California move here. The cost of living is so much cheaper. It a pay raise for them.
I did get good news this week. One of the kidney foundations is going to help cover the cost of my meds. They are going to pay directly to the med manufacturer and the manufacturer is going to send my meds. Very happy about that. I just finished the paper work to Medicare to see if they will pay for my premium. They said it would take three to four weeks to hear back. If I can get Medicare to cover my premiums we should be ok financially. My counselor is trying to get me do something like Go Fund Me to cover my extras for transplant. Like food, hotels, gas because I will have to stay at the hospital for about three weeks after transplant. My transplant center is three hours away from where we live. She said it can be quite expensive. Have you tried a Go Fund Me account for your expenses? Has it worked for you. I'm a little nervous about it. I don't want people to think I'm ripping them off. If you have any insight, it would be appreciated.
I agree with you. We do need one easier system. I asked if I could go back to Ohio to be with friends and family for a while on treatment. I got a big fat "NO." The only way I could get help is if I moved back to Ohio permanently. I have a son in college and my daughter is in middle school. I don't want to leave them permanently. It's crazy. I just wanted to go for two months. So, we went back to Ohio on vacation this past week. Being on dialysis and traveling was an eye opener. All the planning, trying to find lodging, having to rent a U-Haul for my boxes. It cracks me up when doctors and nurses say its easy to travel on dialysis. They can say that because they don't have to do it. It was good to see everyone but it left me drained. I slept a lot because of it. Which left my friends and family worried that I needed to go to the hospital for a sleeping disorder or Lyme disease . lol We won't be traveling again for a long time. lol
One last question, if you don't mind. Do you know how long before you will get transplanted? Here my doctors told me if I can find a living donor I can get transplanted within 3 to 6 months. If I have to wait for a deceased donor it can be 2 to 8 years. Is that about right? I asked if I could get transplanted in Ohio but I was denied. I was told I have to be within 4 hours for my transplant center. I have three other transplant centers I can list at but I had to wait for my SS go through. I can start listing at them this month.
Any insight you have would be appreciated. I just started this whole process back in November. Still trying to figure it all out.
Thank you for you help. I hope I can be just as helpful to you.
It sounds like you’re going through a maze trying to get everything figured out. I’m so glad to hear that your medication is covered, hopefully your Medicare premiums will be as well.
I would imagine you’ve already done this but thought I’d mention it to be sure. There is a website you can go to to find kidney transplant centers/hospitals. The directions for using this site and the website itself are detailed by the National Kidney Foundation:
You may have to copy and paste that address into your web browser to get it to work. Anyway, if you use that website to find a transplant center you may find one within four hours of your home with a shorter wait time for the transplant.
I live in the Ksnsas City metropolitan area and was surprised to see that St Luke’s Hospital (at 4320 Wornall Ave) has one of the shortest wait times in the nation with some of the best outcomes in the nation. My nephrologist just talked with me about referring me to St Luke’s for transplant eligibility testing. So I don’t know if I’ll qualify for a transplant at this point but am keeping my fingers crossed. Should I qualify I’m very pleased to know that I’ve got such a great transplant center so close.
I’m not sure where you live in Missouri but if you’re within 4 hours of St Luke’s Hospital you might want to check them out as a possible place to list for a transplant.
Best wishes and let us know how everything is going.
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