I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: rfranzi on June 30, 2011, 06:24:32 PM
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Hi all! I wanted to get an opinion on this, because I am struggling with it. I recently changed nephrologists because I was extremely unstatisfied. There were many things, but it mostly involved being referred to as a data point by my doctor directly, not getting straight answers to my questions, receiving cold and insensitive treatment, ordering and repeating tests that seemed unnecessary and not addressing what did seem necessary, like choices in blood pressure medications, decisions on rituximab treatment, and so on. I am stage 3/4 ckd, with fibrillary glomerunophritis, of unknown cause.
The old neph., for instance, said to me on one visit, "good questions, but we're out of time". You had to be there. I only had a couple of more questions he could have easily answered. I was always fighting for any information or cooperation and I always felt more despondent after I left his office than when I arrived. He had me taking Micardis at an out of pocket cost of $100 a month for blood pressure. When I questioned the choice, I was given answers like "I stand by this choice", which is a non answer. My new dr. by the way, changed the prescription almost immediately without my even asking. One of his first questions to me was, why Micardis? I told him I'd been trying to get a straight answer to that question for months.
I also explained to the previous doctor that I was self insured with high deductibles and receiving disability. I asked about the necessity of the repeat tests and got answers like "it's your health", again clearly non answers, but urging me to do it. After one blood test and $2,000 in bills for it, I sought out a new doctor.
Well, you already know I've switched doctors. I didn't tell the new neph any of this, as I just wanted to see what he would say and do independently, and he has completely validated what I was feeling all along. I still haven't told the new dr. what I went through with the old one. I don't have the knot in my stomach when I leave his office and I feel like he actually has my best interests at heart. They are like night and day.
I am paying my bills to the new doctor and some of the old ones from other recent tests. Truthfully, I'm swimming in bills and I know it's only begun. And I'm honestly trying to keep up at least with a payment agreement, even though I may lose a chunk of my income in August. But each time I reach for the bill from the former neph., something stops me and I put it in the back of the pile. I looked up the patient bill of rights, and I don't feel like I was treated with respect, I don't feel like I was informed about my treatment or the cost despite repeated questioning, I don't feel like I want to pay for care I felt I did not receive. I feel he ordered unnecessary and duplicate tests to cover his butt and I think the way he did it bordered on fraud.
Since there seems to be essentially no rights as a consumer in this regard, I am putting this out there in the chance that someone has gone before me. I don't know what my legal rights are, but I need to figure it out soon before it goes to collections. I really hated these guys and felt that my dr. hurt me more than helped me there. I pay my bills but I hate paying for dead air. I would be interested in hearing any similar experiences and how you handled it. Thank you.
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I would report your quality of care and see what could be done. Not sure if your on medicare but there's a section on their website about filing complaints
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Hello, rfranzi,
you have my sympathy and I understand where you are coming from.
I am under a different health-system (NHS in England) but I had similar experiences like you.
Over many years I tried so hard to get proper health-care, I never had any luck.
I suffered cerebral haemorrhages, chron. osteomyelitis, a massive stroke and now end-stage-kidney-failure,
(10-12% kidney function for over two years now)
because I never received any medical health care when I needed it most.
Of course, I went through all the obvious complaints-procedures
up to the medical Ombudsman, including MP’s, authorities etc. But no luck.
Looking back, I feel, I was a in a distorted health-care-venture
like the mice and rats in a laboratory, whose well fare is not being considered,
they are only used for their contribution to the medical research being conducted upon them.
My opinion was of no value, my feelings or my fragile health were hardly a consideration,
I was meant to be obedient and made to feel uncooperative
if I did not comply with doctors’ wishes.
The whole process traumatized me enormously.
I now have finally found my own way forward:
I avoid this unhealthy health-system. I pay cash for each of my blood-tests
and with the help of the Internet and my diet I keep as healthy as possible
and try to stay pre-Dialysis for as long a possible.
This way I avoid the many, many hours I was made to wait
sitting under bright fluorescent lights in unpleasant,
unhygienic hospital- and Surgery environments,
which had no benefit to me, it only gave me severe flare-ups of my Lupus/MCTD
due to the photosensitivity from which I also suffer, which in itself is a danger to my health.
This was never ever considered by the doctors, in fact many denied its existence.
I know it seems that I am more at risk not going to any doctors
but having followed this path for over five years I do not look at it that way;
I feel it is my only choice at the moment and I feel comfortable with it.
Good luck from Kristina.
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First of all, I am relieved that you have found a neph with whom you are satisfied. Any doctor that you will be seeing for the long term when you have a chronic illness needs to, at the very least, keep you informed. We are so often told by medical people that we have to be responsible and adhere to the treatment they prescribe, but it's hard to do that when you don't understand their rationale behind their strategy.
I'm sorry, but I really don't see a way out of paying past bills. If he ordered tests that you feel were not necessary, I can understand that, but there are still technicians who ran the tests and pathologists who read and interpreted the results, so there are more people being paid than just your old neph. I suppose you could lodge a complaint with the board of his practice or something along those lines, but you may incur more costs in the long run, plus you'd have the added anxiety of still having this unresolved issue hanging over your head.
But I am really glad you brought up this issue because it illustrates how important it is to have the sort of relationship with your doctor where you can say, "I don't think that particular test is necessary. Convince me otherwise." I have refused certain tests in the past. Like your old neph said, it's your health, but it is also your pocketbook. (In response to your specific question, I just refused the tests. That's how I handled it.)
Practicing medicine today is like printing money. It's not like buying shoes where YOU decide how much you want to pay or whether or not you need new shoes at all. We're supposed to put our trust into these people and are not given the opportunity to ask how much this or that costs. We don't choose to get sick.
I really don't think you have any recourse because who is going to decide whether or not you got the care that you paid for? Another board of doctors? They're just going to argue that you were tested so as to exclude possible causes for your illness. How are you going to prove anything? So looking at it pragmatically, and while I understand EXACTLY what you are feeling, I think you've done all you could do and switched doctors. But I don't see a way out of paying those bills. If anyone has another response, I'd love to hear it.
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^
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One last thought elicited by noah's post....
You have to decide what it is you actually want. If you just want to be relieved of your obligation to pay your bills, that's one thing. But if you want to lodge a complaint specifically about your doctor's inaction/over-action/whatever you care to call it, then you can follow noah's good advice, but like he said, you'll probably still have to pay, particularly if it is not the doctor you are having to pay but, rather, the lab and the pathologist.
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Wow, thank you for your feedback. I understand how you feel, and have felt the same way, but I guess I have not felt comfortable without a doctor's care knowing that I am sick. Honestly, I always thought the care was better on the other side of the ocean, so your story was a real eye opener for me. I didn't really get into it, but the doctor I liked was my fourth try. The first three had trained together, and they all had the same attitude and protocol. I had to travel out of my immediate area (the Eastside of Seattle) and go into the city to find the one I have now.
I completely understand how you feel, though. I get claustrophobic and have panic attacks while waiting in those small rooms with those bright lights. I really can't believe I've shown up as much as I have, but somehow I keep doing it. Hang in there, it takes a lot of energy and work to find the right doctor for you. I really feel like the good ones are in the minority, at least in my experience and the system itself is sorely lacking in patient compassion. I am glad you have been able to stay pre-dialysis for so long and are keeping up with your labs. I wish you all the best, and thank you for your feedback. It just kills me to pay this creep after how he treated me. Especially thousands of dollars that I don't have that was garnered from scare tactics. Not right.
What good is a bill of patient rights that says you have a right to be informed regarding costs and so on when they don't follow it or adhere to it? What rights? Okay, I am venting now, when I just meant to say thank you. I wish you all the best.
Hello, rfranzi,
you have my sympathy and I understand where you are coming from.
I am under a different health-system (NHS in England) but I had similar experiences like you.
Over many years I tried so hard to get proper health-care, I never had any luck.
I suffered cerebral haemorrhages, chron. osteomyelitis, a massive stroke and now end-stage-kidney-failure,
(10-12% kidney function for over two years now)
because I never received any medical health care when I needed it most.
Of course, I went through all the obvious complaints-procedures
up to the medical Ombudsman, including MP’s, authorities etc. But no luck.
Looking back, I feel, I was a in a distorted health-care-venture
like the mice and rats in a laboratory, whose well fare is not being considered,
they are only used for their contribution to the medical research being conducted upon them.
My opinion was of no value, my feelings or my fragile health were hardly a consideration,
I was meant to be obedient and made to feel uncooperative
if I did not comply with doctors’ wishes.
The whole process traumatized me enormously.
I now have finally found my own way forward:
I avoid this unhealthy health-system. I pay cash for each of my blood-tests
and with the help of the Internet and my diet I keep as healthy as possible
and try to stay pre-Dialysis for as long a possible.
This way I avoid the many, many hours I was made to wait
sitting under bright fluorescent lights in unpleasant,
unhygienic hospital- and Surgery environments,
which had no benefit to me, it only gave me severe flare-ups of my Lupus/MCTD
due to the photosensitivity from which I also suffer, which in itself is a danger to my health.
This was never ever considered by the doctors, in fact many denied its existence.
I know it seems that I am more at risk not going to any doctors
but having followed this path for over five years I do not look at it that way;
I feel it is my only choice at the moment and I feel comfortable with it.
Good luck from Kristina.
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Thank you, I very much appreciate the useful info, and I will follow up on it. When I got diagnosed, I soon accepted the fact that I would have medical bills to pay. I just hate feeling so ripped off. I will follow up with the resources you provided. Thanks again.
My suggestions are based on your being a pre-dialysis/transplant patient and not on Medicare.
You can start by lodging a complaint against your former nephrologist with the Washington State Department of Health:
http://www.doh.wa.gov/hsqa/MQAC/ComplaintFAQ.htm
However, they will not get involved with billing issues.
Secondly, I suggest you contact Bill Peckham (bill.peckham@yahoo.com), a kidney patient advocate who lives in Washington and should be knowledgeable about patient recourse in the state.
Check out Bill's web site - "Dialysis from the Sharp End of the Needle" - at www.billpeckham.com for excellent information on patient advocacy and esrd treatment issues.
Lastly, you always have the option of contacting an attorney who specializes in medical malpractice. Most will give you an initial consultation at no charge to see if your complaint has merit for a successful lawsuit.
My personal advice? Send a letter (with a cc to the WSDOH) to your former nephrologist explaining exactly what you stated in your post above, file a formal complaint with the WSDOH and then let it go.
You are under a ton of stress right now with all that is going on in your life and don't need to be wasting energy on the former nephrologist. You have found a new one who is meeting your needs so consider this a new start and move on. Put all your efforts into doing as well as possible with CKD and in learning about your options for ESRD treatment.
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report to state medical board, hit the reply button on the search engine for consumer reviews, and my personal favorite: ask them if they've ever heard of youtube!
seriously, we have the same thing where hubbys first doc is concerned. still getting bills. i wrote a letter but no response. i throw em in the burn pile. not the best response but you can't take something we don't have.
*i should add that the 3rd time was a charm when switched docs. the ones we have now are excellent.
they know i am a strong advocate for my husband and question everything and school myself. at the transplant eval they asked me how i learned all i had, i said the internet. there was and is no support group for this and we were stumbling in the dark alot.
i've caught alot of mistakes, like drug overdoses, slapping a BP cuff over the IV, continuing to prescribe a certain med with a bad side effect he has after i ask for different. the doc is great though, he will look up a new med to make sure its on the walmart 4$ list, and i know he has a ton of other patients. his bedside manner is perfect. his nurse PA i've had issues with. after 4 days in ICU i told her i can do this at home. she threatened AMA if we left, says "you can't just leave", i said "what you'll arrest us?"..
then i just said i'll call the insurance co and tell them there is no reason for us to be there. she then called his doc, who said what the heck are you people doing, they need to go home, discharge them.
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Thank you rfranzi, for your kind words.
The neighbours grass seems always greener.
(The type you walk on when you go to the park).
I always admired your system:
You know where you are, you pay and if you are not able to pay.
at least you know where you stand,
and that knowledge might give you at least a chance to find other ways.
Our system asks for no costs on the surface,
but by not receiving health care when you need it most of all,
it lets you down, and you don't know where to turn for help,
because, as I have said, theoretically help exists,
and the lack of it only becomes clear when you are in urgent need of it.
I do hope, you will be able to solve your problem soon.
I wish you good luck with it and send you my kind regards,
Kristina.
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At first I was hesitant to post my feelings about that bill, but I am facing losing over half of my income in two months and would rather put good money towards good doctors, being that there is no end in sight to the medical bills that will still be coming, and my ability to pay is shorter than the bills are already. But even giving them $50 seems like a travesty of justice, given how I felt I had been treated. I feel their actions border on fraud. The only time the doctor ever called me was to try and convince me to have this expensive test repeated even after I had declined it. Other times, he had promised to call with my lab results because he never did them beforehand, and he never called with them. I had to follow up and talk with the nurse. I could go on and on about what I considered bad behavior by this doc. I am fuming still as I write this, but it has helped tremendously to hear other people's stories of dealing with this kind of thing. The next best thing to being able to converse over a cup of coffee, as you so aptly stated, there are no support groups for us. I feel a lot less alone with you guys here. I just wish the circumstances were better! Lol. Thanks so much for your honest feedback. A while back I had gone to some insurance site and posted questions, and it quickly became obvious that the responder represented the insurance company! So it is really nice to be so honest and receive honest feedback in return and most of all, support. So thanks so much.
report to state medical board, hit the reply button on the search engine for consumer reviews, and my personal favorite: ask them if they've ever heard of youtube!
seriously, we have the same thing where hubbys first doc is concerned. still getting bills. i wrote a letter but no response. i throw em in the burn pile. not the best response but you can't take something we don't have.
*i should add that the 3rd time was a charm when switched docs. the ones we have now are excellent.
they know i am a strong advocate for my husband and question everything and school myself. at the transplant eval they asked me how i learned all i had, i said the internet. there was and is no support group for this and we were stumbling in the dark alot.
i've caught alot of mistakes, like drug overdoses, slapping a BP cuff over the IV, continuing to prescribe a certain med with a bad side effect he has after i ask for different. the doc is great though, he will look up a new med to make sure its on the walmart 4$ list, and i know he has a ton of other patients. his bedside manner is perfect. his nurse PA i've had issues with. after 4 days in ICU i told her i can do this at home. she threatened AMA if we left, says "you can't just leave", i said "what you'll arrest us?"..
then i just said i'll call the insurance co and tell them there is no reason for us to be there. she then called his doc, who said what the heck are you people doing, they need to go home, discharge them.
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I always admired your system:
You know where you are, you pay and if you are not able to pay.
at least you know where you stand,
and that knowledge might give you at least a chance to find other ways.
This is total nonsense. I mean that literally. I find it deeply offensive that a non-resident would characterize the US system this way. Kristina, you have no idea what you are talking about. How can anyone admire a system that shuts out 30 million and counting, and forces members of the rapidly vanishing middle class to pay more and more into health care to receive less and less, while CEOs and senators pay nothing, not one dime, to receive the finest health care in the land? That is the crime in our capitalist health care world - the poor are expected to contribute more money (not even a greater percentage of their income, just flat out more money) to their health. Knowing where you stand, whatever that might mean, is useless. Speaking from hard time done in this country's healthcare system, it takes years to even understand it on a cursory level, let alone be able to make sweeping statements about how great it is. Our political parties agree on absolutely nothing in this country, but not one person that I can remember came to the defense of our current way of approaching health care. Since you have the option of paying privately for care in Britain but you can ill afford it, why does this not give you the incentive to, as you say, find other ways? Your situation has been discussed at length on this forum. You have access to health care, excellent health care in the opinion of the Brits I know, but you choose not to take the basic steps to access it. Come on over to America! You will find a country whose citizens are by and large openly hostile to foreigners, especially those that are in failing health and cannot afford their own care. Be sure to let us know what these "other ways" you find are - I know plenty who could use that information.
rfranzi, I agree with MM in that most of these bills will not involve payment to the doctor, and therefore, since you agreed to the tests (you have the right to refuse any treatment or any part of any treatment) there is probably little recourse now. If the nephrologist works under a hospital's banner, you could perhaps get out of paying for one visit to him, but if he is in private practice, I would say it is not worth it because you will only trash your credit rating. I, too, have had a particularly awful time trying to find a decent, local nephrologist, so I know how it is when you continue to see a doctor whom you understand is a terrible physician, but since no one could force me to see these people, I paid even when I felt they did more harm than good. I did complain to an ER once and was not billed for anything, but I walked out before I was seen and had only had a single tube of blood drawn when I gave up on them. I know it sucks, but this is our system. I once had to pay several thousand for two visits to a transplant nephrologist when we were told by our insurance that we were covered there and then they told us that we were not covered, and that they were not responsible for what their own agents told us. Under the NHS, if you have a miserable experience with a doctor, it is not compounded with the added insult of being forced to pay the creep. Good luck!
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From my viewpoint, you're going to get stuck paying those bills. For example, his choice of BP med is no doubt w/i the standard of care, so that it cost you money isn't bad practice from the doctor's viewpoint which wil be shared by you state medical board. Failing to answer questions is poor bedside manner, but unless informed consent to treatment is at issue, the doctor isn't obligated to enroll you in his own private medical school to explain each and every procedure, recommendation and decision until you understand it.
We here are living in a fee per service medical delivery system, where all services are expressed in a numerical code (i.e. 450.191) you will have a very difficult time explaining that you didn't get the service for which the bill was rendered.
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I should clarify that I did say no. The only time the doctor ever called me was to urge me to do the test after I had declined it. Given the fact that even when he said he would call with my labs and never did, the fact that he called me and tried hard to persuade me to do these tests made me feel like I was dealing with a snake oil salesman. I have very strong gut instincts, they kept me alive in NYC a long time ago and I can tell when I'm being hustled. I did the test for the sake of it, but it was compounded with the sort of bad behavior I spoke of earlier and of course the tests were bull and showed nothing. I truly believe they were more interested in making money than in actually treating me. Like I said, he wouldn't answer my questions, but this was the only thing I ever saw him put any energy into.
As for the comments about the other side of the ocean, Well, I am so glad you are here, what an eye opener. Yes, lately I have been realizing (gaining wisdom?) that the grass is not so much greener and we all systems have imperfections. True, here with money many times you can buy good care. But it really sux to be here and not have that kind of money. I worked as a corporate financial analyst for over 20 years, but never made money because I was too honest. I guess I could be classified as a whistleblower. Hard to make money and have ethics here, but I am getting off topic. The point is, I am nothing close to rich and in that case, ones choices become much narrower. I have individual insurance that I purchased until I qualify for our government program, Medicare, in October. I will have to buy parts a, b and c, costing me almost as much as private insurance. I will basically be living around the poverty level for my country if I lose my employer's portion of disability in August (currently scheduled to end, my lawyer is trying to get it extended)....I would have liked to have planned better for this part of my life, but I am just over 50 and just finished putting my son through college. I was unable to continue working for other reasons and had to file for disability two years ago, and then the kidney disease showed up, and now I am just trying to get through this. It's life, I suppose, but in the last few decades I have watched it get harder and harder to get ahead. I personally worked two jobs, put myself through college twice and my son once, I thought I did all the right things but found it harder to get work and found I had to work harder when I did. So I did not have the individual savings I would have liked, my savings were spent in the nearly two years it took without an income to fight for and receive my disability benefits. So, short story long, yeah, its nice if you have the money, you definitely have more options, but I don't think that applies to most of us. It was sheer brute will that I just kept seeing a different doctor at first because I was just diagnosed and frightened. If I was going to accept medical treatment for this condition, I knew I would have to find a good doctor. But after seeing the bills pour in, I am considering putting off some things. I know it's my health but it's also my money. Sometimes it comes down to medical bills or food.
Our system is driven by insurance companies and doctors are so constrained, from allowing only 15 minutes per visit per patient, to the games they play with charges, discounts and allowances. It's completely profit driven, and in most of my experience (last doctor being the exception), when I walked through the revolving door, all they saw was dollar signs. Guess we all have a lot of work to do to come up with a better system for all of us. Anyone who is not a billionaire is pretty disgusted with the state of politics and the direction all of this is going in for our futures and our children's futures. I'll just leave it at that. I don't know about you, but I have definitely learned a few things.... (Hope I didn't rant too much.....)