I am very interested------

[cattlekid]

You may want to look into options for training.  In my case, there was absolutely NO WAY that my husband could be present for an entire three weeks of training.  Since I was going to be doing everything for myself, including setting up, tearing down, cannulating, flow sheets, working with the PureFlow, - all he had to do was attend two training sessions to ensure that he had an overview of the process and what to do if the excrement hit the oscillating device. 

Obviously, if your care partner(s) are going to be more heavily involved, then they may have to attend more of the training, but you still might be able to condense it for those that are just going to be backups.

Was on PD for about 3 years. Infections took it's toll and I'm on in-center hemo.  Looking into home hemo, but haven't started training yet.  My concerns with home hemo are 1) self sticking - hate needles.. 2) training time required - My wife is going to be my primary buddy, but my 3 daughters are going to backups.  The training is going to put a strain on their work schedules.  And is may not work out.    Grumpy

[Deanne]

I just started PD and am hoping for a transplant within a few months. If PD doesn't work, I'll feel forced to in-center. I'm single, live alone, and was told home hemo won't be permitted without a care partner.

Editied to add: Why is everything still more difficult for single people? Why doesn't the medical industry show more interest in us? Statistics show that 44% of people over the age of 18 are single. That's a huge number of people to disregard. Source: http://www.census.gov/newsroom/releases/archives/facts_for_features_special_editions/cb12-ff18.html

[KatieV]

I just started PD and am hoping for a transplant within a few months. If PD doesn't work, I'll feel forced to in-center. I'm single, live alone, and was told home hemo won't be permitted without a care partner.

Editied to add: Why is everything still more difficult for single people? Why doesn't the medical industry show more interest in us? Statistics show that 44% of people over the age of 18 are single. That's a huge number of people to disregard. Source: http://www.census.gov/newsroom/releases/archives/facts_for_features_special_editions/cb12-ff18.html

It depends on the center.  The center I am with, the Rubin Center, allows home hemo without a care partner.  However, they have an internet monitoring connection with your cycler.  They do routine machine checks throughout the treatment.  If there is an alarm, you have some time to respond.  If they don't see a response, they call you.  If you don't pick up the phone, they call 911.

They are an unusual center, I believe, in that they offer ALL methods of dialysis (at least all I know about).  They have regular 3x a week in-center, 3x a week evening shift, nocturnal in-center, PD, short-daily home hemo, and nocturnal home hemo. 

[noahvale]

That presupposition probably holds true for in center patients who are doing the "usual" in center schedule.  I see that you are doing incenter, but self care and extended hours.  Perhaps obsidianom isn't aware that this modality is offered at some clinics.  Noahvale, do you by chance know which percentage of clinics offer self care and extended hours?  You've no doubt posted about your schedule, and I'm sorry that I cannot recall it offhand, but could you tell us (an obsidianom) by what you mean by "extended hours" exactly?  Thanks.

I do not know how many clinics offer selfcare and/or extended hours.  It's not on the list of info required by the ESRD Networks from the clinics.  However, I'd say less than 1% of facilities have selfcare shifts or protocols and less than .05% of patients do anything more than self-cannulation.  I'm defining selfcare as: cleaning patient station, stringing machine and logging pre-treatment test results (PH/Conductivity level/machine as been rinsed), drawing up meds (my current clinic does not allow this unless it is something I bring in), treatment monitoring, rinseback, cannulation and needle removal.  Although I hook up my bath, I'm not allowed to go in the water treatment area to draw it up.  At the clinic where I first started in 1978, selfcare was only for evening shift (6p-10:30p) patients who were either working or going to school and needed the later hours.  Patients had to be medically stable (higher patient:staff ratio) and show competency with the treatment process and were also required to breakdown their machines and clean stations afterwards.  At my current clinic staff is always available to "pitch in" at any stage when needed. 

While numerous patients at my clinic self-cannulate and decide how much fluid they wish to have removed during treatment, I'm the only one in my clinic willing to do anything more.  I'm also the only Caucasian on the overnight shift and I believe, one of only 6/200+ total in center patients.  On the occasion when one of the other patients (day or night shift) asks why I do this, I straight up say through my 20+ years of doing dialysis, no one is going to take better care of me, than me.  There's greater chance of human error because each tech is responsible for at least 4 patients at a time while some are not as careful cleaning stations between patients which increases infection rates.  The basic responses are - it's too complicated and they are paid to take care of us.  On the first, I say the techs had to learn how to do it, and do they think the techs are any smarter or capable than themselves?  And on the latter, I just let it go.  There are techs/floor nurses who are all for patients doing more - takes a bit of stress off of them - but hit the same wall as I do with the "you're getting paid to take care of me" excuse.

As for my schedule, I run on Sun-Tues-Thurs for 6-6.5 hours per treatment.  I go in around 7:30 pm and usually on the machine by 8:30 pm.  My definition of "extended hours" is 5 hours or more per treatment.  I don't differentiate by time of day/night.  There are 28 on my shift and I'd say half dialyze 8 hours and the rest evenly split between 6-7.

I'll also volunteer that when I had to (reluctantly) go back on dialysis in 2004 after losing my transplant, I did not want to do self-care.  I didn't even want to be back on dialysis for that matter.  I started sometime around 2007.  Left the first clinic due to shitty care and a tyrant of an FA (who was let go and then became a dialysis clinic state surveyor - a perfect position for him, seriously) and went to a just opened DaVita about 30 minutes from home in 2006.  Within 6 months care at the clinic started heading south and it was beginning to effect my quality of care.  I took back my control at that time, and then left for my current clinic in 2010.  BTW, while it is a part of a nonprofit, medical school, the day to day operations have been jobbed out to a for-profit dialysis management company. 

EDIT:  I absolutely have to add that my nephrologist at the time of going back on dialysis until he left private practice in 2010 to become Emory's Medical Director, Kidney and Pancreas Transplant Programs was my biggest advocate.  He (along with his NP) not only stood beside me, but went far beyond what was required to do through some of the worst crap DaVita tried to heap on me.  My current nephrologist and the one who rounds in her place - I get along with.  They listen, but at times, just don't get it.  But, they are the ones who fought for the extended treatment shift and for that, I give mucho props! (-:

 

[MooseMom]

That was a really, really interesting post, noahvale!  I learned a LOT!  Thank you very much.

[obsidianom]

That presupposition probably holds true for in center patients who are doing the "usual" in center schedule.  I see that you are doing incenter, but self care and extended hours.  Perhaps obsidianom isn't aware that this modality is offered at some clinics.  Noahvale, do you by chance know which percentage of clinics offer self care and extended hours?  You've no doubt posted about your schedule, and I'm sorry that I cannot recall it offhand, but could you tell us (an obsidianom) by what you mean by "extended hours" exactly?  Thanks.

I do not know how many clinics offer selfcare and/or extended hours.  It's not on the list of info required by the ESRD Networks from the clinics.  However, I'd say less than 1% of facilities have selfcare shifts or protocols and less than .05% of patients do anything more than self-cannulation.  I'm defining selfcare as: cleaning patient station, stringing machine and logging pre-treatment test results (PH/Conductivity level/machine as been rinsed), drawing up meds (my current clinic does not allow this unless it is something I bring in), treatment monitoring, rinseback, cannulation and needle removal.  Although I hook up my bath, I'm not allowed to go in the water treatment area to draw it up.  At the clinic where I first started in 1979, selfcare was only for evening shift (6p-10:30p) patients who were either working or going to school and needed the later hours.  Patients had to be medically stable (higher patient:staff ratio) and show competency with the treatment process and were also required to breakdown their machines and clean stations afterwards.  At my current clinic staff is always available to "pitch in" at any stage when needed. 

While numerous patients at my clinic self-cannulate and decide how much fluid they wish to have removed during treatment, I'm the only one in my clinic willing to do anything more.  I'm also the only Caucasian on the overnight shift and I believe, one of only 6/200+ total in center patients.  On the occasion when one of the other patients (day or night shift) asks why I do this, I straight up say through my 20+ years of doing dialysis, no one is going to take better care of me, than me.  There's greater chance of human error because each tech is responsible for at least 4 patients at a time while some are not as careful cleaning stations between patients which increases infection rates.  The basic responses are - it's too complicated and they are paid to take care of us.  On the first, I say the techs had to learn how to do it, and do they think the techs are any smarter or capable than themselves?  And on the latter, I just let it go.  There are techs/floor nurses who are all for patients doing more - takes a bit of stress off of them - but hit the same wall as I do with the "you're getting paid to take care of me" excuse.

As for my schedule, I run on Sun-Tues-Thurs for 6-6.5 hours per treatment.  I go in around 7:30 pm and usually on the machine by 8:30 pm.  My definition of "extended hours" is 5 hours or more per treatment.  I don't differentiate by time of day/night.  There are 28 on my shift and I'd say half dialyze 8 hours and the rest evenly split between 6-7.

I'll also volunteer that when I had to (reluctantly) go back on dialysis in 2004 after losing my transplant, I did not want to do self-care.  I didn't even want to be back on dialysis for that matter.  I started sometime around 2007.  Left the first clinic due to shitty care and a tyrant of an FA (who was let go and then became a dialysis clinic state surveyor - a perfect position for him, seriously) and went to a just opened DaVita about 30 minutes from home in 2006.  Within 6 months care at the clinic started heading south and it was beginning to effect my quality of care.  I took back my control at that time, and then left for my current clinic in 2010.  BTW, while it is a part of a nonprofit, medical school, the day to day operations have been jobbed out to a for-profit dialysis management company. 

EDIT:  I absolutely have to add that my nephrologist at the time of going back on dialysis until he left private practice in 2010 to become Emory's Medical Director, Kidney and Pancreas Transplant Programs was my biggest advocate.  He (along with his NP) not only stood beside me, but went far beyond what was required to do through some of the worst crap DaVita tried to heap on me.  My current nephrologist and the one who rounds in her place - I get along with.  They listen, but at times, just don't get it.  But, they are the ones who fought for the extended treatment shift and for that, I give mucho props! (-:

 

They should PAY you for all you do. I am impressed. I like the way you are so involved in your care and you are correct in that no one is going to care about you as much as you do .
I used to clean my own office OR before surgery (I used to do in office minor surgery for years) and still clean my own instruments after in office procedures as I feel I do it better than an employee as my butt is on the line , not theirs. So I understand your feelings about doing it yourself. That is another reason I took over my wifes dialysis as i feel I care more than the clinic people.

[noahvale]

Judgemental? Not at all.  Just a doctor looking to see if I can help. I am sorry if this ofended you but it was never my intent.
The medical literature is full of studies indicating the more dialysis the better for health and survival. That is a simple fact. What is not certain is how to do it. Extended care in center is certainly one option. You are doing that apparantly and that is great. You are receiving better care than 3 days per week at the usual 3.5 to 4 hours.
My reasons for asking the original question were in trying to see if there is some type issue that may be fixable for more people to do home dialysis and get the benefits of either more frequent dialysis which is also found to extend lives and health or at home nocturnal(extended hours). As a doctor I want to use my skills to help fight this terrible disaease of kidney failure . Obviously I have a personnal stake in that I care for my wife who suffers from it.
One thing I have learned from my time here on this site over several months is how much most posters here hate their clinics. Obviously I cant say it is 100% but it is a common theme. I saw the same issues people complian about when my wife was in center for 3 months. She had many of the same complaints.
So seeing the issue of how unhappy many people are with in center dialysis I found myself wondering what could be done . I prefer to act rather than sit by and feel helpless.
My first thought was , what is stopping people from taking dialysis home and away from the clinics and the issues that upset people. That is where this question came from. I felt knowing why might give me some place to start in my interest to improve things for others. PERIOD.
If you are happy with your set up and your clinic , than I am happy for you. Many others are not. I cant change the clinics but perhaps there are ways I can have some effect on making it easier to do dialysis at home. I do talk to the company(Nxstage) a lot and have an engineering backround and perhaps modifiacations can be made to make things easier for patients at home.( I have no monitary relationship with NxStage, just find them easy to work with and talk to). (Other machines and companies may be equally easy to work with but so far my experience has been with Nxstage)
So bottom line, this was done purely out of the desire to help. I worded it as carefully as I could to try to avoid this type of argument and end up skewing the answers.
I guess the old adage is true, "no good deed goes unpunished".

You've put alot out there and I'm just going to dive in.

"I cant change the clinics ..." - Of all that you wrote, this infuriates me the most.  Maybe you aren't a nephrologist, but you are a physician.  You have cache with that M.D. after your name. Plus, now you have first hand experience because your wife is a patient.  You and Hemodoc must know others to help put pressure on the "gonifs" who call themselves nephrologists.  I guess your definition of "do no harm" doesn't extend into the clinic setting.

Here's the reality:  Unless Until our country goes to a gatekeeper-type medical care rationing system, dialysis out-patient dialysis clinics are here to stay.  Socioeconomic demographics and the aging of America dictate this.  I feel that it will be easier to improve the quality of care in the clinic setting than to get more patients to take the responsibility of doing treatment, more specifically hemo/NxStage, in their homes.

Negative in-center issues that can be improved:

High Infection rates - the current high rates are totally unacceptable.  Administrators need to quit giving lip service and begin to hold floor staffs feet to the fire when it comes to catheter care, cleaning patient stations, and washing hands/changing gloves.   Either shift charge nurses or other dedicated staff, need to continuously monitor floor care.  Educate those with bad habits at first and then sanction/fire as necessary.  This ain't rocket science.

Educate patients - originally, this was the purpose of social workers and dietitians.  Now, "education" consists of giving patients handouts.  Centers need to get back to these basics.  While it is difficult to do 1-1 with such large patient loads, ancillary staff can do personal interaction 1 dialysis pod/section at a time.  At my center, that's 8 patients.  Use whatever visuals work best.  The main thing is, get out on the floor!

Promote/encourage patients taking on more treatment responsibility.  Have floor staff (techs mainly) talk with patients about how to do more.  Start small with taking own BP, temp and learning how to  put in their machine parameters.  Then, move up to self-cannulation.  Use other patients for this.  A patient is probably going to listen more to a peer who already self-cannulates than a staffer.

Make 4.5 hours the minimum treatment time. -  Practicality alone dictates there is not enough time in the day, nor number of dialysis centers/staff available to offer "optimal" dialysis time incenter.  However, a high number of patients can live well if receiving 4.5 hours x 3 with a decent sized dialyzes.  Yes, they will have to be more careful with diet and fluid restrictions, and maybe be on more meds, but if consistently getting this amount of treatment, quality of life can be good.

Which brings me to a new form of education - before starting dialysis, nephrologists should give patients these options:

Standard hemodialysis - In center treatment - 4.5 hours per session x 3 weekly.  Minimum amount of dialysis needed so you can feel well enough to go back to your pre-dialysis lifestyle. Dietary and fluid restrictions, plus usually more medications.
Optimal hemodialysis -
        Extended hours In Center treatment - 6-8 hour sessions x 3 weekly during overnight hours
        Home NxStage hemodialysis  -  5/6 daily treatments from 2-3 hours each
        Home Hemodialysis - 4.5 hours per treatment every other day.
        Home Nocturnal Hemodialysis - 8 hours x 3 per week.

All allow for fewer dietary and fluid restrictions/possibly lowering in the number of medications needed.

Forms of peritoneal dialysis - positives/negatives

Transplantation - +/-

Basically, changing minimal incenter treatment times to 4.5 and getting a handle on infection rates will go along way towards improving incenter dialysis outcomes.  And I do actually believe these are reasonable and obtainable goals.  Much more so than getting 10s of 1,000s of patients to do home dialysis.

You may want to preach to the world about how wonderful home dialysis is.  However, not everyone is like you, have the same wants and desires, lifestyle, temperament, much less motivation, to even want "optimal" dialysis.  However, what I have touched on above is a good start to at least giving them a decent minimum level of care.  But, hell, how can this even be accomplished when patients - PATIENTS! and caregivers have given up. 

So, there's my soapbox.  It's time for me to get ready to go to treatment.   

Oh, why have I done incenter for the 22+ years I've been on dialysis?  Because I've made it work for me and have had great nephrologists, NPs, and mentors for support.  My little corner of the clinic is just fine for now.  Thanks for asking.

[noahvale]

*

[Hemodoc]

Dear Noahvale, not sure how I got caught up in this discussion, but yes, I do know folks that can be very influential, but I am also no different than you in understanding my own treatments and having the ability to articulate that to the staff as I did a couple of weeks ago when they wanted to reduce my dialysate dosage for purely economic reasons.

Having an MD after my name has had much less influence on these creeps than you can imagine. I am constantly amazed at what they try to get away with in my own personal care and understand greatly how other patients without a basic knowledge of these issues can be intimidated by these creeps. But understanding your treatment is an essential survival technique that anyone can develop and should develop as a dialysis patient. Yes, having an MD gave me a huge advantage since I already had a very good understanding of the medical principles involved, but it has not in the least kept them from placing obstacles in my path just like everyone else.

Once again, not sure why I am caught up in this discussion at hand, but simply having an MD grants you no immunity from these creeps whatsoever.

[amanda100wilson]

Noahvalr, I take it Dr Paston was your neph.  Where do you dialyze?

[obsidianom]

I will simply echo what Hemodoc stated. I also have run ins with my wifes medical people all the time. We are still in the midst of a major disagreement about buttonholes. At our last clinic we were treated so poorly by the idiot nephrologist I was stressed for days. Nephrologists seem different than other docs to me. I can only tell you a story about my career that will state this.
I butted heads with one nephrologist for 20 years long before my wife became ill. This woman doc. was a real control freak. Whenever we saw the same patient she would demand complete control. If I saw the patient she expected me to only do what SHE wanted. If I felt different then her professionally , she expected me to do it her WAY . wE HAD NUMEROUS RUN INS OVER 20 YEARS. I never understood her until now after my wife became a patient in her old group. She has retired thankfully but the same mentality still exists to some degree in that group. They believe they own patients. They want to take ove r all care and run the show. There is little room for patient input or other doctors to be involved. There is something that seems to occur in the minds of these docs when a patient is on dialysis that makes them become control freaks and difficult to deal with. As I stated in another post, my friend who is the medical director in the local hospital was shocked at what I recently told him was going on. I did some educating to him at least.
All I can say is having my wife be on dialysis has been an eye opening experience. I look back on my career and understand a lot better what went on with that nephrologist all those years. I do agree that the whole system needs improving.
Attacking me in some posts for trying to help and throwing in Hemo- doc with all he has done is counter productive. We all have a common enemy , kidney disease and dialysis , so we need to be working together, not throwing anyone under the bus.

[brenda seal]

Those of us who do not have medical degrees have to be guided by what the experts advise . Laurie was on PD for nearly a year and then received his haemo - dialysis at a large teaching hospital here in Australia for ten months . He had a tunelled chest catheter as peripheral vascular disease made him an unlikely candidate for a fistula . this in itself ruled him out of home haemo .
Although he received excellent care , I did my best to educate myself on all aspects of dialysis and made sure I sat by his side every minute of every treatment and questioned everything ! Unfortunately it was not enough .

[obsidianom]

Those of us who do not have medical degrees have to be guided by what the experts advise . Laurie was on PD for nearly a year and then received his haemo - dialysis at a large teaching hospital here in Australia for ten months . He had a tunelled chest catheter as peripheral vascular disease made him an unlikely candidate for a fistula . this in itself ruled him out of home haemo .
Although he received excellent care , I did my best to educate myself on all aspects of dialysis and made sure I sat by his side every minute of every treatment and questioned everything ! Unfortunately it was not enough .

I am sorry for things not working out. It sounds like you did your best and thats all anyone can ask
It is interesting you mentioned not doing home dialysis due to catheter. Here in our area at least we do home dialysis on catheters as long as there is proper training on the use and upkeep of the catheter. Is it dfferent in your country?
Catheters are easier to work with than fistula or grafts. Yes there is the infection issue but that would be true in center also. I used to do a catheter at home and found it so much easier than the current fistula. I still worry about infections just as much now with the buttonholes in the fistula.,
 

[noahvale]

*

[noahvale]

*

[Dman73]

I applaud anyone who takes as much control as they can over their D treatment (cleaning and prepping their machine, self cannulation, monitoring machine, ect). It makes one feel less dependent on having someone else (usually different people) performing these functions.

When I started D in the early 70's I was offered to learn how to setup/operate the machine which made me feel more in control and gave me a better understanding of the D process.

We had a nurse only staff of 3:1 ratio which allowed more time to converse & learn and actually get to know the people working on you and visa versa.
 
Today it is almost robotic how the techs put people on and take them off with little or no time for conversation. You can feel the atmosphere that nobody wants to be there and their minds are elsewhere. It is quite the opposite of being on a cruise ship.

Personally, I try to make D the least important facet of my life. I do have to spend the 4 hrs sitting during the treatment (watching TV, or on the internet) scheduled at the end of the day so that I get home about 9 pm, have something to eat and go to sleep.
   

[Henry P Snicklesnorter]

.

[noahvale]

*

[Hemodoc]

I will simply echo what Hemodoc stated. I also have run ins with my wifes medical people all the time. We are still in the midst of a major disagreement about buttonholes. At our last clinic we were treated so poorly by the idiot nephrologist I was stressed for days. Nephrologists seem different than other docs to me. I can only tell you a story about my career that will state this.
I butted heads with one nephrologist for 20 years long before my wife became ill. This woman doc. was a real control freak. Whenever we saw the same patient she would demand complete control. If I saw the patient she expected me to only do what SHE wanted. If I felt different then her professionally , she expected me to do it her WAY . wE HAD NUMEROUS RUN INS OVER 20 YEARS. I never understood her until now after my wife became a patient in her old group. She has retired thankfully but the same mentality still exists to some degree in that group. They believe they own patients. They want to take ove r all care and run the show. There is little room for patient input or other doctors to be involved. There is something that seems to occur in the minds of these docs when a patient is on dialysis that makes them become control freaks and difficult to deal with. As I stated in another post, my friend who is the medical director in the local hospital was shocked at what I recently told him was going on. I did some educating to him at least.
All I can say is having my wife be on dialysis has been an eye opening experience. I look back on my career and understand a lot better what went on with that nephrologist all those years. I do agree that the whole system needs improving.
Attacking me in some posts for trying to help and throwing in Hemo- doc with all he has done is counter productive. We all have a common enemy , kidney disease and dialysis , so we need to be working together, not throwing anyone under the bus.

Nephrologists are a completely different animal than the rest of American medical practitioners and with rare exception, that is NOT a complement. It goes further since all of the support staff are like minded Nazi, Gestapo agents I am convinced. I personally believe it fits in with the prison guard experiments from quite a while ago where the guards became quite sadistic simply by virtue of having the power to do so.

http://en.wikipedia.org/wiki/Stanford_prison_experiment

Unfortunately, I truly believe that this same empowerment is at work in dialysis units.

[Dman73]

It has been my observation that if you act like sheeple and don't have a clue what is going on then this empowerment game will be in full force especially if you treat the physician as a some sort of demigod. In other words, the patient gives this power to their caregivers.

If you know how the system works (experience), understand D and have specific methods that work for you (clean your own arm, tell them where to stick you, how much to remove, fold corner of band aid to aid in removal, ect) you actually train them and gain their respect and be the empowered one. Fortify your actions with logic and obtain expected results, be courteous and respectful and give them "thanks" when due and they will give up their power to some extent.

I respect my nephrologist and he listens to my viewpoints and generally goes along with them. For the 10 years that I have known him he has only played the "are you a doctor?" card once on me where I backed off and went along with his advice and he ended up being right.

In reality, it's their game on their playing field and you need them so tread easy because you don't want them to tell you to find another place to dialyze.     

[obsidianom]

It has been my observation that if you act like sheeple and don't have a clue what is going on then this empowerment game will be in full force especially if you treat the physician as a some sort of demigod. In other words, the patient gives this power to their caregivers.

If you know how the system works (experience), understand D and have specific methods that work for you (clean your own arm, tell them where to stick you, how much to remove, fold corner of band aid to aid in removal, ect) you actually train them and gain their respect and be the empowered one. Fortify your actions with logic and obtain expected results, be courteous and respectful and give them "thanks" when due and they will give up their power to some extent.

I respect my nephrologist and he listens to my viewpoints and generally goes along with them. For the 10 years that I have known him he has only played the "are you a doctor?" card once on me where I backed off and went along with his advice and he ended up being right.

In reality, it's their game on their playing field and you need them so tread easy because you don't want them to tell you to find another place to dialyze.   

Basically everything you said can be correct with some nephrologists. However there are others who wont give an inch and dont want patients to be partners in their care.
Your last line is interesting. Yes it is their field but it shouldnt be their game. It should be a partnership. It often isnt.
I find personally that treating the nurses and clinic staff extra nicely makes a big differance. They do respond to kind words and are more human . At least the ones I deal with. Of course I always treat nurses well and have since my residency days when they were so helpful to me starting out as a doc and saved my buttt a few times. I have great respect for nurses.
I still dont understand the issue with catheters and home hemo. In so many ways they are easier to manage than fistulas and grafts with fewer issues . Yes they can lead to infections but that is true anywhere including in center. If it were up to me I would train patients in home hemo on a catheter first and let them learn the equipment and the process without the worry of cannulization. Then later i would switch to the fistula or graft. That is how we started and it was easier.

[cattlekid]

I will completely agree with this statement.  Due to timing issues, I learned the NxStage machine and went home while I was using my catheter.  My fistula had just been created and was not ready for use yet.  So I learned with the catheter, went home and used it for a while, then came back for another week of "training" while the nurse established my buttonholes. 

This worked for me because my training nurse had the bandwith to train me twice.  Three weeks on the machine, then a week of cannulation with the buttonholes.  She even came to my house when I was cannulating myself for the first time.  Not every training nurse has this luxury. 

I also had the personal bandwith to go to training for the three weeks, plus another full week.  Not every patient has that luxury either. 

I would hazard a guess that the "not wanting to start with a catheter" has everything to do with the expense of dual training periods and the lack of adequate reimbursement for home hemo training then any particular concern about infectious disease.  I've found that a lot of situations that are explained away with a medical reason don't really have a medical reason when you start asking pointed questions.

I still dont understand the issue with catheters and home hemo. In so many ways they are easier to manage than fistulas and grafts with fewer issues . Yes they can lead to infections but that is true anywhere including in center. If it were up to me I would train patients in home hemo on a catheter first and let them learn the equipment and the process without the worry of cannulization. Then later i would switch to the fistula or graft. That is how we started and it was easier.

[Hemodoc]

Avoiding catheters stems from the realization that the US had the highest rate of catheter usage which contribute greatly to our much greater mortality and morbidity compared to other developed nations.

Fistulas have the lowest rate of infection and other access complications. No conspiracy here, just good medical advice. 

I learned to self cannulate nearly two years before I started on home hemo. My delay was in large part to my choice to go first with the FMC Baby K, but then a year later I decided to go with NxStage and they took several months to get me into their program. I did self care in center, cannulating and running my own machine. I answered all of the alarms and hooked myself up and took myself off.

Learning to self cannulate is one of the most important survival determinants of dialysis. Getting rid of catheters is one of the other survival choices. Keeping a catheter for convenience sake is a very dangerous proposition for several reasons. I believe that the dialysis unit itself, not the home training program is where anyone interested in home hemo should first demonstrate a proficiency at cannulation and then learning the machine is a piece of cake.

[monrein]

 I completely agree with Hemodoc on the fistula over catheter issue and also on the advisability of self cannulation if at all possible.  I am very happy to say however that  in my experience with our dialysis nurses (techs only clean machines here) and indeed nephrologists themselves, I have encountered no sadists or otherwise brutal people.  I know many patients who find the vast majority of staff caring and kind for the most part and I have observed and received any kindnesses and empathy.  The prison guard experiments have never ever come to mind.

[noahvale]

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