I have been on dialysis 5 years now, have been on PD, for 2 months, but never ever want to deal with pertinitus again…have been on hemo most of the 5 years, Im a systems engineer by trade and know how to diagnose a problem and research the answer, since being on dialysis I do the same thing, when I experience a problem, I research the problem I know how to read the studies, and basically how to interpret wether or not it will help me, I say all that to say, after all that when I call my nephrologist, he dismisses anything that did not originate from his office, he wont respond and his treatment is not customised to me, he treats all his patients the same. I’m trying to have a better quality of life on dialysis, and no I dont want a transplant, Ive researched that also.I’ve recently been reading about BMP-7, bone morphogenic protein, and how its greatly helping the osteo problems dialysis patients are plagued with, and an added side effect has been to actually regrow cells in the nephrons, possibly reversing some forms of kidney failure, but my outlook because of the conflict of interest that exists with nephrologist, I feel it will take years before patients, will see any benefit.
Hi Evelyn,
Thanks for posting! Glad to see you here–and sooo sorry you’re frustrated at a nephrologist who isn’t listening to your concerns and respecting the research that you’ve done into how your treatment affects how you feel. You DO have the right to expect those things. Sometimes people have solved this type of problem by having a talk with their doctor about this topic exactly: “It’s really important to me that I work as a partner in my care with you, and for that to happen, I really need you to ___.”
You might point out that you are on your own, managing your day-to-day care FAR more than you are in the office, clinic, or dialysis facility, so you need to be armed with the ability to recognize symptoms, know what to report, understand what your meds do, be able to put meal plans together, etc.
If this doesn’t work, the other approach is to shop around for another nephrologist who is willing to work more closely with you. If there are other nephrologists in your area, you might see if you can set up brief appointments to talk about what you’re looking for in a doctor. Some doctors really appreciate patients who are willing and able to be involved in their care–and, as you’ve seen, others don’t.
Good luck, and let us know what you end up doing!
I will start on a search for a new nephrologist, it may be me, but he’s not the first one Ive encountered this with, and along with the fatigue from the kidney failure, anemia etc… It’s sometimes easier to get frustrated with having to fight someone to get decent care. Your advice is right on target, and I appreciate it. Its a long hard road and not necessarily because of the kidney failure 
evelyn,
Don’t feel bad- I’ve had 4 nephrologists and each one of them was very arrogant to me. One of them was foreign born and he was as nasty to me as men are to women in Iraq. Another one was a sports enthusiast and it felt like he was in a competition with me to score points on who was going to decide what was best for “my” tx. With this last one, I got in a big argument with me telling me telling him I found him very arrogant and unprofessional. So, he yelled louder at me and gloated at me.
How do I feel about all of this? I think that any doctor who behaves like this should be reported to the medical board or a board set up for patient grievances. Just leaving and getting another doctor allows this behavior to go unchecked which is maybe why doctors have a reputation, in general, for being arrogant. Patients in small towns or in cities that have a dialysis company monopoly are stuck with these type doctors. That’s totally unfair and must be stopped.
I agree with you, it just burns me up, and it seems to me that its an attitude that’s prevalent with nephrologists. Its a big conflict of interest, because the nephrologists get a capitation each month, at least in my case I know when I had private insurance my nephrologist was getting 2000.00 per month, and I never see him, he sends his nurse practicioner to the unit once a month, the only time I see him is if I go into the hospital, and then its only 5 minutes to poke his head in and get a consult fee. Factor that by 50 patients just in the unit Im in that are assigned to him , then multiply that by 10 to 15 units, thats alot of money, so it seems to me that nephrologists are not actively trying to decrease your dialysis, ie. by new therapies that would make you healthier thus needing less dialysis, medicare pays for 3 times a week up to 4 hours so everyone just about is on the same amount of dialysis, yet everyone does not have the same level of health. Thats why when a patient actually researches into some of these things you get a very harsh response, I had my nephrologist just out and out lie to my face about an issue, I cringe when I hear about “quality of life for dialysis patients” its a joke. I joined this board because again, im faced with dialysis providers telling me I cant, go on home hemo, I have catheter acess and have for the last 4 years due to the fact im allergic to the material the graft is made out of, my nephrologist told me I was crazy because he invented it and its hypoallergenic, :? ive had several venagrams I cant get a fistula, so Ive been on catheter most of my time, were im located renal care group is the only provider who has a home hemo program, and I talked to the woman there and she emphatically said no, because of the catheter, because they want their numbers to be at a certain level. I know other patients across the country who do home hemo with a cather, who do I go to? its so frustating.
evelyn,
I agree that everything you said is the truth. So, I believe those patients who are able must take their lives in their hands by joining with others in dialysis advocacy to effect change at the state level. The feds have given us general regulations, but its up to patients, their caregivers, concerned others to get more specific laws and enforcement at the state level. After years of posting on boards, patients are now forming committees to actively bring change. I’d encourage you to get involved as change is very possible when state legislators are approached. Such has already occured in a number of states with tech certification. The same is possible with the other issues that beset dialysis consumers.
Dialysis and transplant facilities are governed primarily by federal regulations, called the Conditions for Coverage of Suppliers of End-Stage Renal Disease Services. The federal regulations were published initially in 1976 and have remained virtually unchanged except for adding some regulations on self-care since then. Since the late 1980’s we’ve been told repeatedly that new regulations were being written and should be published “soon.” Patient advocates and providers have anxiously awaited publication to see what the new regulations will mandate. States may have regulations that apply to healthcare providers in general, healthcare facilities, or dialysis or transplant facilities that expand on federal regulations.
The new federal regulations have been drafted and recently went to the Office of Management and Budget for their approval. OMB has 90 days to approve the regulations before they’re published. [Note: OMB has returned these draft regulations multiple times so far and sent them back to CMS some redrafting so it’s possible that publication will not be in 90 days.] Once the regulations are published in the Federal Register (Notice of Proposed Rule Making or NPRM), the public (patients, professionals, providers, organizations) will have at least 60 days to comment on them. CMS must read, catalog, and consider all comments they receive during the public comment period. CMS is not required to do anything with comments received before regulations are published.
We will let people know as soon as we find out the regulations have been published and you can check for regulations pertaining to ESRD in a couple of different places – http://www.regulations.gov (choose Centers for Medicare and Medicaid Services for the agency and type in ESRD for the keyword) or http://www.cms.hhs.gov/providers/esrd.asp where you can find all kinds of things pertaining to Medicare/Medicaid and kidney issues. You might want to join Home Dialysis Central to get our free newsletter (see home page) and join the action e-list to get action emails (legislative action page).
FYI – When the federal regulations are published, it is important for anyone who is interested in dialysis and transplant issues to comment on those things they like as well as those things they don’t. It is almost 100% guaranteed that CMS will get hundreds if not thousands of comments and they will express conflicting opinions on many sections. If you only comment on those things you don’t like, you can almost be assured that some of the things that you like will not be included in the final regulations when they are published.
Some states have enacted legislation that requires not only that clinics be certified by Medicare but by the state too. Some require clinics to pay annual fees for certification. Some require certification of technicians. State nurse practice acts limit what unlicensed personnel can do in dialysis. As far as I know, no state requires that patients be educated about treatment choices or living with kidney disease, however the federal regulations require that patients be informed of the options for treatment that a clinic offers. However, if a clinic doesn’t offer all options for treatment, I suspect few clinics tell patients about the options they don’t offer that are offered by others. This is one of the reasons why Medical Education Institute started this website…to inform patients of the options for home dialysis and where they’re offered.
Regarding physicians and the fees they’re paid…in 2004 Medicare changed its physicians fee schedule. Although in the past, Medicare paid a set amount (monthly capitation) without taking into account how often a nephrologist saw his/her patient, Medicare now pays nephrologists based on the number of times they see a patient. If they see a patient once a month, they get less than if they see a patient 2-3 times, which is less than if they see a patient four times a month. Medicare allows nephrologists’ colleagues or nurse practitioners to see patients for some of the visits. However, the nephrologist himself/herself must see each patient at least once a month to get the full Medicare payment. We’ve been concerned that the new fee schedule might lead physicians to not refer patients to home dialysis where they would get less (the rate for 2-3 visits/month which is less than the old capitation amount) or that they would require their home patients to come in more often – one of the major reasons why people choose home dialysis is to not have to come to clinic as often. New legislation (ESRD Modernization Act) that was recently introduced in Congress would look at ways to offer incentives for home dialysis including not paying paying physicians less for the home patients they follow.
Physicians bill commercial insurances at a higher rate than Medicare allows. If patients are concerned about commercial payment for physician services, they should ask their insurance how they pay for nephrologist visits and what documentation is required for nephrologists to get paid to oversee their care.
that info is great, I will personally try to comment and get hooked in with as many advocate groups that I can. I know my doctor is abusing his patients just by what you said about capatation and visits, he doesnt visit at all. So obviously there needs to be a change, what saddens me is that in the mean time the one who really suffers are the ckd patients like myself.
I have been on home hemo for 7+ years, most of the time with a central line subclavian catheter, as I’ve been a patient for more than 30 years and most of my peripheral vessels are clotted. I have dialysis in the evening, so I don’t sleep, but I did try nocturnal and also had no problems. During that brief stint I was given a special clamp to prevent the separation of the tubing. It’s really easy and my catheter works well. I suggest that you contact other units in your area. When I started home hemo I had to train at a unit almost 2 hours away, but it was well worth it. Search this site and others to find a home unit that wants you to be on a home therapy. Yes, it takes more time than going to a unit, but I have much more freedom and flexibility in my life. Go for it!
I agree with Carol. My dad has to use a catheter and we have been doing nocturnal dialysis for 4 years. This should not have stopped them from allowing you in the home-hemo program. In fact in the very beginning all patients were required to have a catheter if they were going to do nocturnal. That has since changed. Where do these places get their rules and since when is “cooking the books” more important that the patient. Why does it make a difference what your numbers are. You have the same numbers in center or at home. Unless of course you run longer at home then they will be better.
I know, thats the problem, they focus on that and dont even consider what Im telling them, obviously if Im in center with a catheter and they dialyze me why cant I go on home hemo, but the same center that Im in is the same center that is the only one offering home hemo, and they have these arbitrary rules, but I will keep trying Im going to try to find someone at the kidney foundation, maybe they can talk to them, I already know I would be better off with home hemo, just because I can do it daily, even if I dont do nocturnal.
I have been on in-clinic hemo dialysis for 2 1/2 years now and since then have had 2 nephrologists. The first doctor was great, he thought outside of the box and seemed to take into account that “Life Happens”. He looked into my complaints of “Flu-like” symptoms and pointed me to the internet to learn more. Although he was busy, he did his research and shared it with his patients. This is the level of patient care that one should expect in my book. The only problem with him was that the Dialysis center that he was associated with was a Dump. Machines that drained into open shared drains that where absolutely nasty. Fly’s would annoy patients to the point where no one wanted to eat or drink in the place. So I set out to find a new center in better condition and I did. But in making this change, I had to change nephrologists and the next one was a trip. Every thing that I complained about, he dismissed. Once I had a sinus infection and could not get hold of my primary… He was called 3 times by the charge nurse and basically ignored the complaints. Finally after 2 weeks, I ended up in the emergency room after dialysis with a massive infection and fever.
I found out about home dialysis on my own and called the center myself. When they approved my insurance, I told my nephrologists about it. He basically dismissed that too.
Recently, I got a date confirmed for me to start NxStage training. When I told him he hit the ceiling. He brought up things like missed appointments and bad labs. Don’t get me wrong, Maintaining good electrolytes are critical for folks on hemo. The labs were bad but the missed appointments where when Hurricane Wilma roared through my town causing more damage than any other storm in Florida’s history.
I guess I though all doctors where like Dr. Mark Welby (TV show for many years) they took an oath to help and cure when possible. But doctors have become so self-serving that I now feel they need a wake-up call. If a complaint board was formed, they would need the power to suspend a doctors privileges until the issue is resolved.
Maybe this is a bit severe but anyone that has worked or dealt with Doctors know that they don’t listen. They basically don’t care about anything but their capitation and compliance without question. This will not work! I just don’t have the answers for this question but I’m willing to do all that I can to change it for the many people that can not express their views like we can. Want to help, email me…
Believe it or not, my doctor has been charging my insurance 30 to 40 thousands the last few months.
Any nephrologist that doesnt want to listen to my opinion or ask for my input would not be my nephrologist for long…It should be a team effort. Dr.s are not above any patient although many like to think they are and the patient should remain silent. Get a new Neph…
eveylyn, is that you…my old friend from the lb> been looking for you. anna