Once your on home hemo and you have a doctor you see once a month.
What will a nurse do for you? In an emergency you get to a er. and who do they call , your nurse or your doctor? I hope they call my doctor. If you have been trained right and are running, things should be good and small problems you should be able to handle. If not maybe you should not be on home care. It seems that it just another way for the dialysis center to get a cut of the money. First I draw my own blood for labs. Second I go once a month to doctor who should have your lab report and would he/she not be the one who mades the call on if your doing good ,bad etc. But no, I have to the center and see the nurse and soc worker and a dietitian. all say the same thing. Yes your doing great or no you need to work on whatever. They say that it’s so because if you need er work and need to come back to a center. I will never go back to a center, unless the centers change, where the comsumer comes first and he\she has some sense of respect.

And why all of sudden the doctor who before you went on home or in center you could not for 6 months he now has time to see you once a month and in center some doctor , not your’s, see’s you once a week just to say Hi. More $ to doctor and center. Dialysis needs to wake up to new age in which people live. These companys got into the line of work to make $ because if you look at the stats. , ( which everybody here quotes) the rise in dialysis consumers will grow in years to come. Don’t forget the baby boom folks. I have respect for nurse’s at least in the old days. Now a day some of the nurse’s I’ve run into just want the money and great hrs that they can made to fit there life. So much for the consumer. Sorry about going on ,but the more I see and hear both off this page and from doctors and nurse’s the more questions that come up.

bobeleanor :?:

Federal regulations governing dialysis clinics require that a patient have access to a nurse, dietitian, and social worker. These regulations require that clinics following in-center or home patients do patient care planning on unstable patients monthly and stable patients every 6 months. Patients can and should be involved in these meetings. Since staff don’t know until they see the home patient whether he/she is stable or unstable, most clinics set clinic visits monthly. Every clinic I’ve worked at the doctor has seen the patient in a private exam room during the clinic visit instead of at his/her office. In all my clinics, the staff held their care plan meetings after the clinic was over. Each team member offers his/her clinical assessment of how the patient is doing. Based on these assessments the team sets treatment goals. If your clinic does things this way, ask to participate in care planning. You may find out that the staff cares more about how you’re doing than you think they do now.

If the clinic is providing the dialysis machine and supplies (Method I), the Medicare allowable for home hemo is the same as its in-center composite rate and the support services are part of this charge. Medicare pays 80% after the annual deductible.

Under Method II where the patient gets his/her machine and supplies from the company that makes them, Medicare only allows a dialysis clinic that provides support services to charge $121.15 for the month and it pays 80% of this or $96.92 after the annual deductible has been met. This fee is for as many calls as you need to make to any of these people at the dialysis clinic including the calls they make to you.

If you’re in the ER, the hospital will call your doctor. If you’re at home, you can call your doctor or your nurse. Maybe your doctor is more responsive than what I hear from other patients, but most patients find that they get calls back from their nurse faster than they get them from their doctor. Early in home training, you should find out who the clinic suggests that you call for what and who to call after hours if you have a problem. If you don’t hear this the first day, ask.

It sounds to me like you have had bad experiences with nurses and you don’t believe you will be able to trust the home training nurse or you think the home training nurse is usurping your doctor’s authority. I’m not sure if your bad experiences are with the nurse that will be training you, but if they are, maybe you should seek training from another clinic where you can trust the nurse. In my experience, a trusting relationship (two-way) between the nurse and the patient is a key component of successful home dialysis.

I have to totally disagree. My nurses and home center are my FIRST choice to call if I have any kind of problem. First, it is next to impossible to reach my nephrologist at any given time, sometimes it might take all day or until the next day to reach him. He also has many many more patients than “my” nurse who is intimately up to date on my treatments, issues etc. My nurse works with me to get my doctor on board for certain issues and treatments, she is my advocate.

Personally I feel my monthly (every 6 week) appointment with my nephrologist to be a waste. He simply goes over my test results, something that has already been done. In 4 years I think he has listened to my chest once (a requirement for going on dialysis). He has looked at my 3 year old fistula, I think twice.

Give me my home nurse anyday!!

self home hemo 9/04

Same here, I agree with you. My clinic senior nurses have constant contact my Dr. and alot of the changes and orders are given to me from them…I do see my Dr. once a month…


So you feel you want the life and death choices to a nurse? What then do we have doctors for? I too would want one or the other but when something isn’t right who to do you trust and if the wrong call is made who are you going to hold responsible?

I my self want to cut my ties to the center and just see a doctor. If i have problems I want mine doctor to talk with me and say if I need to change meds or go on new meds. In an er case I going to the er where my doctor works and I have a record. My nurse lives 70 miles away , the center is 50 miles aways. The er is 20 miles away. I’ve told her right off that at 3am if I have a problem I’m getting to the er and we talk later. So far I have not had any problems that I or my wife have not handled.

Thanks Beth , I knew that more than not it had to be some law or rule … Oh Well

bobeleanor :slight_smile:

I guess if it is life or death I do as instructed, call 911. Otherwise it is quicker to reach a 24 hour on call nurse than it is a doctor without a cell phone who could be in one of two offices or at up to a couple of different dialysis centers or is meeting with a patient and doesn’t want to be disturbed or is on vacation.

I’ve found the real use of my doctor is to write prescriptions, other than that I rely on my center, they are much more knowledgeable about the workings of the dialysis machine, my doctor has never even seen the one I am on, and are the ones trained on dialysis, my doctor is trained on my kidneys. There is a huge difference. I doubt there is a neph out there that knows how to work a dialysis machine and/or how to put on or take off a patient. Dialysis is what I am talking about, not any other issues, all of those are taken care of by a physician.

You sound as if you like to place the responsibility on others, I feel that it is MY responsibility to do dialysis. If I have issues around dialysis I rely on my experts, primarily my home nurse who will check with a nephrologist or mine, if she can reach him, if it is medical related.

I have just recently had a major problem that is a bit personal so I don’t want to go into it. My nurses and center were helping me all day, it took from 11 am until 4:30 for them to even reach my Doctor, even after getting a message to his main nurse. It ended up that he simply okayed everything they did, order some stuff we thought was totally unnecessary (which takes a while and he now agrees doesn’t need to be done), and everything (hopefully) is back under control.

When you get with a home program I think you will find that it is very different from what you experience in center. Since I have never had an incenter treatment I can’t really discuss it, but, the stories are what made me even more determined to get home.

FWIW my center is 45 minutes away (soon to be 25), and my neph/ER are 10 minutes away. The phone of course is right next to me, that is what you need in an emergency, a phone and an ER. A trained nurse is who you need with a dialysis problem that is not life threatening, which is probably 99.9% of the problems.


I totally agree with Cathy. I would hazard a guess and say that my nurse knows as much if not more about the dialysis process and definitely the machines, than the Neph. The nurse observes the processes and reactions on a daily basis at an intimate level and is first to respond to any blood discrepancies… Nephs are kidney experts. They seem much more interested in you before dialysis. After, you are just a set of blood results. (I am generalising but…) I don’t imagine they know where all the buttons are on a Freni or how to fix a problem whilst you are dialysing which could be potentially life threatening. I was once told by an old heart surgeon that if you have a good neph,NEVER let him go, but I reckon the same thing applies to a good Nurse, only more so!

If I go to ER, we first see an ER doctor, who generally doesnt know much about dialysis/renal, and then they ring the “renal team”, and most of the time its a renal reg. and rarely is it my neph, but thats fine with me, they are busy people! The nurses are then called if needed, but they are only there during the day. So best time to go to ER is during the day, I feel much better if I have had the nurses opinion as well as the doctors (depending on whats wrong).


In all my clinics, the staff held their care plan meetings after the clinic was over. Each team member offers his/her clinical assessment of how the patient is doing. Based on these assessments the team sets treatment goals. If your clinic does things this way, ask to participate in care planning. You may find out that the staff cares more about how you’re doing than you think they do now.

It seems backwards to me that patients should have to request to participate in care planning meetings- this should be a given. Staff may care, but patients are supposed to be included in the tx. team according to ESRD regulations, and no matter how much professionals care about patients, they can not know patients’ specific wishes for care.

I have seen all sorts of things on my care plans that do not represent me at all- I always make notations to the contrary. I don’t go to care plan meetings, though, not just because I’ve never been invited (they aren’t interested in my input), but because it seems it would be a waste of time to drive all the way into the center probably on my day off for a quick meeting that doesn’t really get indepth with creative ways to do dialysis care, anyway. I mean the plans are pretty basic, blah plans. So, they bring the plan to my chair all filled out, I make the little corrections, and that’s that. Most patients sign without even reading which is the way management wants it, less problems you know. What could be accomplished by going all the way into center to attend a meeting?

Now at these meetings, if one was free to discuss patient concerns for individualized care that would be different. But every neph I have had has told me individualized care is not possible in-center… that is not the expectation.


Personally I feel my monthly (every 6 week) appointment with my nephrologist to be a waste. He simply goes over my test results, something that has already been done. In 4 years I think he has listened to my chest once (a requirement for going on dialysis). He has looked at my 3 year old fistula, I think twice.

My nephs’ visits in-center have always been less that helpful because for all they know about kidneys, they don’t educate freely. Or they reply to questions in rapid fire doctoreze and it leaves my head spinnning. I have always thought that if they would use the 5 min. they spend with me teaching me something about my conditon, how much better I would be doing and how much more I would know by now. And they are usually clueless when it comes to issues re the machine which is a big part of what I want to know, so they are of no help there.

So, when I get in a home program, I will not consider it a good use of my time to travel to my neph’s office 1x a month. I wish that were not a requirement or that we could do it over the phone.

All my nephs have basically performed the same. One of them did listen to my heart each round. But the rest don’t do that or observe my access. The lab numbers are what interest them and that’s it.

Re txs at home, I would think the training nurse is the first line of action if it is machine related unless ones neph is machine literate.

Its really not up to the doctors to solve machine problems unless its directly related to your dialysis prescription or access.
Its up to the patient to observe your own access, you should be educated enough to know the signs of an infection or blockage. If you arent, then ask questions.
It would be nice if all our nephrologists knew how to operate the machines but I think its uneccessary. I at least expect a general understanding of it, but I dont expect them to know how to set one up.
I dont think anyone likes going to the doctor but with a condition as serious as ours, its important for regular check ups. I check all my labs myself, as do the nursing staff and neph, and then my neph goes through them when I see him. I am happy with them being triple checked, better than not checked at all.
What about your scripts? I know I need my appointments to get any scripts I might need, and theres usually questions I want to ask. We can get the nursing staff to get scripts written for us but they need 2 weeks notice, and then however long it takes for them to be written. Im sure they have other things to do than to be getting scripts for us.
If you think your doctor should be listening to your chest or whatever, then ask while your there. You know you always have to remind them to do their job :lol:

Believe me, what you’ve experienced in in-center is nothing like what you are likely to experience in the home training or home program. It’s like night and day.

When I worked in the 3 clinics I worked in, a home clinic was a block of time set aside to see home patients for each doctor. The nurse, social worker, dietitian, and doctor all focused just on those patients during that block of time. In the hospital clinic, patients had gotten blood drawn that day and the labs were reported pretty quickly. In the free-standing clinics, labs were drawn on a different day so the results could be back for discussion.

On clinic day, patients would come to the clinic and meet first with the nurse who checked vital signs, reviewed medications, talked with the patient about symptoms, answered questions and asked how dialysis treatments were going. The dietitian met with the patient to review the labs that had been drawn previously, discuss medications, and help the patient know what to do to change the diet to control for anything that was outside of normal for a dialysis patient. The social worker met with the patient and family (if available) to discuss coping, problems with home care and activities, financial concerns, work or school issues, and make any community referrals needed.

After patients were seen we would hold a team meeting to discuss and record in patients’ charts patient concerns, goals, how the patient was doing physically, emotionally, and vocationally, and the doctor would enter any changes to the patient’s prescription that he/she had talked about with the patient. If the patient wasn’t there and some change was decided at the meeting, the nurse would follow-up with the patient to advise the patient what to do.

Some doctors may see patients in their offices. However, if the doctor sees patients separately from the nurse, dietitian and social worker, there is no way this can be called “team care planning.” In my opinion team care planning is done in a face-to-face meeting with all the disciplines that work with the patient and the patient and family if they want to attend. This allows everyone to hear everything that is said first hand without having to have things reported by others where something is always lost in the translation.

Oh wow, come to think of it, what a trip it would be meeting with my whole team at one time and having my caregivers/advocates there with me. I don’t know though, seems like the neph would be dominant and everyone else would be less forthcoming. Maybe not who knows. I’d have to brush up on my dictation skills as that would be a lot of note taking at one time. Of course I wouldn’t be dialysis fogged at the time as I usually am on doctor’s rounds since I’ll be on home txs.

Oh the funniest thing. When the nep comes for rounds, first I see him on the other side of the room. I’m getting ready to eat my lunch and I don’t want to be interupted eating when he’s at my chair and I don’t want to be rushed eating before he get’s there. But I opt to go ahead and start as I know it will take him exactly about 30 min. (about 1 1/2 min. a patient) to get to my chair. And like I said, I’m usually dialysis fogged when he comes since I’m on tx. So, I ask a question and he talks doctoreze and my brain is in another dimension. He looks at me funny and I am thinking well what do you expect- how are you when you first wake up in the morning?!-dialysis is similar to that in the effect it has on the brain. This is not a fair exchange- you have your head on straight, but I don’t lol. And as he’s walking off I think to myself, he did say what I thought he did didn’t he :?: -I’m not dreaming it am I :roll:

All joking aside, I do grasp what the neph says although I have to work at it hard in the condition I’m in being on the machine. It would definitely be easier to take in info at meetings if I had a pre-dialyzed brain lol. And maybe if everyone met at the same time they would be more animated/sharp. Well since I will have to see the neph once a month per Medicare regs, I will suggest it be a team care planning meeting… I don’t know if I’ll be able to take everyone all at the same time, I mean medical professionals can get a little way out at times with their medical-eze, but I’ll try :shock:

If they use language you don’t understand, stop them and ask them to define what that term means. It will do one of two things: expand your vocabulary or make them think twice about using medical jargon.

Maybe my advocates and I should bring cymbals and everytime they start the medical-eze clang them together. Or, beachy. can we borrow your samba drum please :roll: Leave it to gus to come up with a descriptive pic, you know…


Your right and wrong , first and foremost the bottom line is that is my responsibity. I choice to dialysis or not, I choice the way. If I have question on if I can change things the nurse can’t make that call, she must call your doctor. I saw my new doctor on 6/1/06 and he and I talked about putting together a whole new team of doctors. Because he only deals with kidneys. I need a transpant doctor and not just a transplant doctor but one who deal with urology problems. And I need a family doctor who will be a team player. . I asked doctor about changeing epo and binders and hep. He told me that he need to my #'s , because the home center failed to send him my MAY #'s. He only had Feb. # which were from in center.

Second who was it that made the call for you or me or any of us to go on dialysis? It was not a nurse, if the wrong call was made there are only two people to take responsibity. Me and the doctor.

The home team that trained you only know what they were train in, and if you and I were trained right , the only problem we might have that need help are er cases. It is my responsibility to made sure the machine is keep in good working order. Just like my car etc. the dialysis machine, is just a machine, and a fairly simple one. Ive been around machines all my life and I don’t panic. (My wife thinks I should). While in training we had a problem with an alarm , no one could solve, not my nurse ,not the head of team. What do we do , we called tech support from the company who made the machine. What was I told to do in cases like that, call tech support.

Don’t get me wrong I have respect for the nurse’s . And if your nurse is open and off the record and I can be trusted. The nurse will tell the same thing. The nurse would like it better if they had more people to train. Most nurses want more people on home than in center. Centers should be for people who really can’t take care of them selves. They really don’t want to go over the same thing the doctor will but that is what they have to do.

sorry for any mis spelling it is to early yet for me

bobeleanor :slight_smile: