Trust in the Healthcare System and Choice of Home Dialysis


I had those problems before, in-center and I remember how I sat eating dinner with my legs feeling freaky…but that problem started for me after 15 years of dialysis…

Now that I am home dialyzing everyday…it disapeared! 8)

P.S. This thread suppose to be about “Trust in the Healthcare System and Choice of Home Dialysis”…hehe


Jane wrote: Quote:
I experienced a mild, but irritating, form of RLS when I was first on dialysis. At the time, I was on re-use and there were a lot of errors in figuring my dw and goal. Once I got off reuse and learned to figure my dw and goal correctly, I never experienced RLS again. I’m sure there are other causes, but this was the cause in my case.

Dori writes:
That’s fascinating! Nobody knows the cause of RLS, but it is more common in people on dialysis. I never heard anyone speculate that this was an adequacy (and/or reuse) issue–when I get a chance, I’ll comb through the medical literature for that, and if I don’t find it, I’ll see what I can do to put a bug in the ear of the folks who study daily and nocturnal home hemo to see if they can add this to their research. You may well be
onto something here, Jane. Thanks so much for sharing this.

Thank you , Dori, for being a member of our team who listens and follows through. My experience has been that most dialysis personnel do not respond to patients’ observations. A small percentage of RNs/techs have shown me that they want to do more than go through the motions of the tx and desire to excell in their dialysis knowledge/competency. I am so appreciative of the medical team members who are supportive and progressive.

As a patient who chooses to be aware, I am continuously observing what is happening during the tx, and otherwise. If I have no RLS outside of dialysis, and not long after I get on the tx my legs can not be still, it doesn’t take a rocket scientist to conclude that something in the tx is affecting me. One other thing I recall that elimintated the RLS problem for me was rinsing the dialyzer with extra saline.

Something I have found out about dialysis is, there is always a reason for every issue. I am often told there is no answer for this and that. But I disagree, because I have found the answers to almost everything I was told there was no answer for. So, thanks again for pursuing this info. and getting it to those who may be able to use it unravel the mystery of RLS. I doubt that it is a mystery at all and has a simple explanation.


Jane the research has already been done. I read an article a long time ago telling the benefits of nocturnal dialysis or more dialysis and the fact that RLS disappeared it patients was one of the benefits. Type in nocturnal on your search and you’ll find numerous articles about the benefits.


I don’t know if anyone else experiences this but my trust in the health care system is diminishing rapidly. I have run into numerous occasions where things weren’t done that were suppose to be. Like sending copies of blood work. No one keeping track of coumadin levels in the hospital. It seems I spend half my day chasing down people just to find out if they did what they were suppose too. Not to mention one person telling you one thing and another person telling you something else. Or having surgery and no one remembering to tell you when to follow up to have the stitches out. This is crazy.


Marty, it sounds like you have had significant experience with our oh, so amazing healthcare system that we have in the U.S.

I unfortunately have an extremely long and complex medical history that has involved not only over 2 years of experience with dialysis clinics and various doctors, nurses, PCTs and such, but also way too many hospitalizations for one person to bear. I learned pretty quickly that, despite what they all say, the only person that is really looking out for me - is me.

It’s a sad fact of our heathcare system, but I no longer have any trust whatsoever in it. The doctors - I am willing to cut them some slack because most of them really are trying very hard to do what they can to make you better. But the nurses and techs are a differnt story. In the hospital, if I didn’t know exactly what one of my doctor’s had ordered for me then I am certain that I would have not received whatever it was about 50% of the time unless I spoke up and asked whoever I saw first if it had been arranged. Normally, the answer was always “I don’t know. I will find out and let you know.” That tactic worked for me most of the time, but sometimes (especially when there had been any kind of shift change) noone even knew where to look for the information. But I just kept asking and eventually, someone would figure it out and manage to get it done.

Surprisingly, I have found the lack of information or follow through to be the worst in most o the dialysis clinics I have been to. Unless the exact same nurse or tech or dietician or social worker or whoever was right there when my neph gave an order and is the one that will be following through on it, I pretty much have to twist someone’s arm to get it done. I think it’s just ludicrous. And I always seem to get the same answer: “Oh, well I don’t know anything about that. I will have to ask so and so about it.” The problem with that answer, is that whoever so-and-so is usually doesn’t have a clue about it either.

It is incredibly frustrating. You think that there are all these people at the clinic who are able to help you with your medical needs and are capable of following even the simplest of doctor’s orders. But they aren’t. They all make it seem likes it’s because they have so many other patients to worry about. I think it is just that nothing related to actual, hands-on care is very organized. Sure, everything they need in order to pass the next federal inspection is incredibly organized. But when it comes down to the actual care of their patients it’s all just a huge jumble of random information that is hard to get to.

I said that the only person looking out for you, is you. That mantra doesn’t work, however, if you are crtically ill and aren’t even able to wake up long enough to see the doctor much less remember what he told you that he wanted to do. I have been icredibly lucky in that regard. When I am in that situation, I can rely on my husband to keep his keen eyes open for me. He’s a nurse manager himself so he knows exactly what is and is not needed. He has no problem whatsoever confronting the people who are taking care of me and making sure they are doing everything the docs have ordered. He’s even gone so far as to make a formal complaint in order to get done what needed to be done.

Before I met my husband, I had my mother do all the bullying when I was out of it. She’s pretty good at it, but not being in the medical field at all leaves her at somewhat of a disadvantage because she doesn’t always understand the nuances of everything that the doc wants done.

Knowing first hand all of the things the health care team misses unless you point it out to them really makes me wonder if those patients that do not have a personal advocate really get what they need when they are either out of it or just simply don’t speak up.

“Trust” and “Healthcare System” do not belong in the same sentence if you ask me. I have seen it all and it ain’t pretty.


I wondered if this thread would ever get back to “trust in the healthcare system!”

Bump, Estomb! (or yes, right on!)



I agree!! Where’s the moderators of this board? Hehe… :stuck_out_tongue: They suppose to be organizing this board!! Please move what’s not related in this thread to an appropiate thread now!! :oops:



Hi y’all,

Sorry, traveling. But I can delete messages, I don’t know of any way to move them somewhere else. Gus, you know more about this stuff than I do. Any tips?


I got a great idea, make me moderator… :stuck_out_tongue: …or

Visit this guide

Note: In order for it to work correctly this board needs subcategories not just HD–For Patients

Example would be…

HD–For Patient

  • Offtopic
  • Dialysis Machine Questions
  • Medicines
  • Symptoms & illnesses
  • Insurance & Medicare

…and so on, doing it like that makes moving unrelated threads easier…


I heartily agree on creating sub-forums for the “HD - Patients” forum. There are so many facts of home dialysis that I often don’t have the time to go through each new thread posted to see if any of those threads relate to my interests.

It would help a lot of there were sub-forums as Gus suggested.


Not being hostile here but what makes you think if there were subdivisions it would prevent posts from taking on a new direction? Seems to me it could get more confusing.


It has nothing to do with that, in a posters point of view it’s different…you just post and that’s all…you post anywhere you want regardless whether your hijacking someone elses thread.

That’s why Administrators and Moderators come in…it’s their job to manage and organize the board accordingly…they move threads that don’t belong in a category or thread that corrersponds what the topic is about.

It’s the basis of keeping a board healthy and clean…and of course, neatly organized… :roll:

“It’s Good to Have house cleaning rules…”


“… Kaiser will not cover Sensipar or oral Hectorol, …”

Try getting assistance from the manufacturer of Hectoral. Call 800-847-0069, give them your info and the fax number of your physican and they’ll fax application form to your physician. Generally this program is for people w/o medical insurance but since your insurance refuses to cover Hectorol maybe they will help you.



Well I guess after reading this thread it seems that home patients are less likely to trust. I don’t know if I’m trusting or just fatelistic. Were we offered home hemo or did we seek it out?

I think it would be helpful to understand early adapters better but for the masses the docs are gatekeepers. We need to find the button that will grow the numbers of people dialyzing at home maybe trust is a part of it.


It’s hard for me to trust health care when proven that nocturnal and daily treatments are better; yet they aren’t offered to everyone and in a majority of places aren’t even discussed. It appears to me we look out for the $$$ more than the patients.


Hi y’all,

Marty said:

It’s hard for me to trust health care when proven that nocturnal and daily treatments are better; yet they aren’t offered to everyone and in a majority of places aren’t even discussed. It appears to me we look out for the $$$ more than the patients.

I’d have to say that I find it terribly frustrating that longer and/or more frequent therapies seem to need a vastly higher standard of “proof” than short, thrice-weekly in-center treatments ever had to meet.

It’s simply common sense that kidneys work 7 days a week, and the more often and/or longer the blood is cleaned, the better. And this common sense is borne out by decades of experience in Tassin, France; London Ontario, Canada; Italy, Australia, and for the past 7 years even in the U.S. Time is a factor in good dialysis. People who get more dialysis feel better, sleep and eat better, have more energy, better sex lives, and need fewer medications.

The argument against the benefits is supposedly that all of these beneficial effects are really the result of selection bias–that the people who choose home treatments are younger, healthier, more educated, and would do just as well with any modality they chose. I don’t believe this for a minute–and I think that using patients as their own controls (by studying patients who switched from thrice weekly in-center to short daily or long nocturnal treatment) proves that this is not the case.

But, of course, there’s a very entrenched status quo that has built up around the notion of popping patients (like cogs) into slots into an in-center system:
– Once clinics are built, there are chairs to be filled, and it is easiest for a doc to call and tell the clinic he needs a slot for a patient.
– The measurement of “adequate” (why not optimal?!) dialysis is based on Kt/V, which is a pseudoscientific approach that seems very credible because of the complex equation, but which rests on the uncertain footing of urea, a molecule that behaves like no other in the body.
– Thrice weekly dialysis is paid for by Medicare on the basis of a historical accident (not science), and the length of those treatments was never specified. In 1973 when the Medicare ESRD Program passed, those treatments were 6-8 hours long. Now, some patients get only 2 to 2.5 hour treatments three times a week.
– Short daily or long nocturnal dialysis have been demonstrated in study after study to reduce the costs of medications and hospitalizations. Unfortunately, dialysis is paid for in Medicare Part B, but hospitalization falls under Medicare Part A. The Congressional Budget Office (CBO) will not allow Part A savings to be credited to Part B. So, it has been impossible thus far to routinely get more than 3 treatments per week paid for, because the increased cost is not offset by the savings.

So, what can you do?

Get involved! The patients’ voice is the one most absent from the renal community’s discourse about treatment. Contact your Congressperson and your Senators. Support specific bills (we list them on this site) that would pay for more patient education, demonstration projects, research to identify the barriers against home treatment, and more than three treatments per week. Write letters to the editor of your local paper. Speak up–if enough of us are heard, we can make things better.


Yes, it appears that $$$ do play a huge role in determing care. I have been checking out the site. (Hubby starting dialysis soon.) If I understood correctly, if he starts HOME dialysis within the first three months, Medicare will waive the three month waiting period and will pay retroctively to day one!

Elsewhere I read that the dialysis center “goes in the hole” for about the first 2 years of home dialysis, but from there on they make far more off home patients than they do the clinic patients.

So how important is the “trust” issue in making the best decision for my hubby’s care when weighed against short term costs and the bottom line? Do they only see the $$$? Or do nephs automatically assume we are all incompetent and really don’t care enough to use good judgement in caring for our loved ones? Do they think my husband will be more careless than a tech in a clinic would be when it is his life that is in jepordy if a mistake is made? Do they just develop a “one size fits all policy” and save themselves the trouble of evaluating every patient?

I’m scared and a little cynical since previous experience w/ the health care community has not done a lot to engender “trust” in the overall system. Individuals within the system have been Saints and life saving Angels, but there have been far too few of them.

Best bet for all of us is to get the House Bill passed by congress, and always remember even though you draw more flies with honey, it’s the squeaky wheel that gets the grease! Okay, I’m mixing metaphores so it’s time to shut up. :lol:


If you go visit you’ll see the reality why there’s NO TRUST in the medical community…


Thanks, Gus. :shock: Now I understand why the Dialysis Patients Bill of Rights and Responsibilities includes mention of patients not insulting nor assaulting the caregivers. Depressing, but good to know. :frowning:


Hummm. Yes, get involved. Recently when I was in-center my catheter lumin (sp?) connector was broken by the technician when he jammed it onto the dialysis lines. Uh oh…

I knew from when I lived in Philly that a catheter could be fixed, so the trip to the emergency room wasn’t alarming. I sat, and waited…and waited, finally after they called my doctor, the interventional radiologist on call (who wasn’t IN the hospital, and had NO plans for coming to the hospital), I was told that the hospital did not have the kits to fix my catheter, therefore I would need to be admitted and have a new catheter placed the next day. When I asked for clarification on whether it was they didn’t CARRY the kits, or that the manufacturer didn’t make the kits, I was told by the hospital ER staff they didn’t know why they didn’t have them, but may be possibly tomorrow the IR doc who would be in the hospital tomorrow (Saturday) would have some in the radiology department .

SO I was admitted, after my nephrologist spoke to me for apx. 15 minutes convincing me to stay.

During the next 24 hours my catheter was OPEN at the end except for the clamp, and the flimsy piece of gauze that was taped over the end. Ok, yes it was somewhat closed, but I have been prone to infections so I was really nervous and requested a sissor clamp to place on it also.

When I was taken to IR, I asked the doc again. Did the hospital not carry the repair kit for this type of catheter or was it that the hospital didn’t carry them. He stated again and again (after I repeated the question different ways) that the hospital didn’t carry them. Finally he said, “I don’t need to be treated this way.” He didn’t need to be treated that way, I was simply asking him a question. Then he asked me if I wanted to have the procedure or not. I told him that I would prefer to have the 15 minute repair. I was stuck, I live alone. I have no family within 8 hours of me, and I am relatively new to my area so I don’t have a close friend to drive me to different hospitals (or the time to waste)

I ended up having the catheter switched over a wire, and released that saturday evening.

Saturday evening, still groggy from the twlight sleep, I researched the manufacturer of my catheter, and emailed their customer service department. Monday morning I found out that a repair kit is made by the manufacturer. I promptly called the patient relations department and explained my frustration. The specialist said she would research the issue and get back to me.

When she returned my inquiry she stated that the hospital has a policy to NOT carry the catheters, and that when a situation arises where a catheter needs to be fixed, they will ORDER the kit (does this make sense?) and that the policy was based on COST factors (ok, I recently heard that they cannot (do not?) charge to FIX a catheter, but they CAN charge to replace one.

I was so upset, still am. This catheter was inserted at their hospital, they should carry the repair kits. I am going to see if I can ask my doctor to write a prescription for a repair kit so I can carry it with me when traveling, or back in-center.

I really feel this hospital is more worried about their bottom line, then providing good service. Not to mention, not caring about the pain they put me through needlessly.

I have 31 years dealing with the medical system for various issues. My CKD was caused by an experimental medical procedure that was not adequately followed up by the doctor.

Trust in the healthcare system. Not me.