Things are happening folks, we need to take a stand and write /email/talk to our reps . I have been both emailing and talking and have sent fax to my state reps in Harrisburg Pa. I’ve also emailed my state rep in DC and filed with EEOC. The issues are not just doing tx at home by our selves if the person is fit and has a good house. We wouldn’t want someone that would go home and then not do the tx’s( skipping or faking #'s) or has living condition that would risk health( Too many pets and/or not keeping place clean or at least a room set aside free from pets and clean) When I first started home tx , I really had no choice, it was come home or stop dialysis end of story due to the conditions at the center. And the only program that was offer was a short daily. So I did home tx for a yr alone, before I found the only center that offer nocturnal.In talking to some people who work in dialysis they will tell the same thing. That the way things are set up now is no way for dialysis in the best concerns of the people on dialysis.
Also the other issue is getting back to work. Part of the reason I did things , I wanted to get back to work. And got into a nocturnal so I could try and work ,no matter what the job time line would be, I want day shift( 6 am or 7 am to 3 pm or 4 pm),only to be turn down without the company saying why, this is where my state rep comes into play. After emailing ,talking , etc. After about two or almost 3 wks, my state rep calls me and tells me that the company had told him , that I would have been offer the job. But the reason at least what he had told me , the company had been told by the company dr, that I was on 3x a wk dialysis in center. And I would not be able to work a full time job…Needless to say I helped to make clear to my state rep what I was doing, when he found out what all I do just with home dialysis. He (state rep) wanted to know why I wanted to go back to work in the first place. I said the bottom line $$$$$.
So this is about more than just doing tx at home in a way that each person along with his/her team know that the person can do what is best for the person over all health. For me I was happy doing tx on my own, but I’m happy with doing tx while I sleep with my wife next to me. But what will finish the story will be that all the work I’ve done to get home and get on nocturnal ends with me getting a job. That has always been the plan. I will give my state rep a set time to reply, after that I will send out my story to folks in DC ( Joe Pitts/ Phil English) and my states AG office health complaint dept. And to the local papers and news channels.
You know it has taken a good bit of time to put this together ,but I wanted to have, first to have the way two centers handle things. Night and day in the way these centers talk or not talk to a person. And I have always been told that that part of dialysis company would be to help people get back or stay in a job. The first center couldn’t care about job placement. The second center has been more than willing to work with me in getting back on my feet. I don’t think this is a Ed issue, as it is a people thing. The folks in the first were and are driven by what is best for dialysis company only, the second I’m sure care about company but if the person who is there as a consumer on dialysis can be made more complete by getting a job or what ever . Then the people working there will try and do what they can to help. This to me is just the mind set of where a person works.People are just going to do the right thing if they are good people or they will not if they are too into the company first consumer second.
As I see it, patients are individuals with differing levels of abilities. Some come to dialysis with more technical ability so do not fear various aspects of the machine operation as much as others. Or some patients have more of a daredevil personality and are more apt to launch into things without a second thought. Some patients are limited by their physical condition for how much they can self-navigate the tx. Make no mistake, dialysis can be quite dangerous if a patient doesn’t fully know how to handle various situations or has a crash. That’s why I say education is key- the better trained the patient is, the better he can handle or avoid problems. I do not doubt that there are those who do solo txs. I’m for it if they are capably trained and know how to handle every eventuality. I am more concerned about the daredevil type who is ignorant of what can go wrong and is unprepared or the patient who thinks he was trained well when he actually was not.
When you treat solo, how do you deal with the occasional cramp or do you keep your goal so high above your weight that you never cramp? Also, one could have an underlying condition when one gets on the machine and not know it resulting in a heart attack or stroke, so what is your plan should that occur? And one could start to choke if food taken in on the tx went down the wrong pipe. Or one could have a leak while napping ( either dialysate from machine or blood from machine or access) which take quick thinking, so will you be in control if it catches you unaware and you are well on the way to crashing? My point is, these scenarios are not going to happen every tx, but what’s your position should they occur and you are alone?
Maybe the issue is that we need to confront things on two fronts… Getting more money for dialysis providers at the DC level. I can see working on that if units meet set conditions. While each of us work on state level if our state laws are not in the interest of the consumer. Now that I’ve made contact with one state rep. on issues that Find just unnecesary. . Why in the world each center gets to treat a person how they see is just wrong. This whole time I thought that CMS made all the rules that told the state how each unit should be , not just as to bloodcounts. But conditions at units (clean, no bloodly chucks laying around), and letting each person know not just when to be at a center ,but of all the tx choices. I realyy don’t think it takes a ton of money for a DR to tell a personof web sites etc. Unless in doing so it might cut into the money the center gets if a person wants to go to another center or do home dialysis. But it seems like the centers get payed if a person is doing home dialysis , which makes no sense.
I think you made several arguments that support my position is isn’t necessarily a matter of education. You are correct that patients have a varying degree of levels of ability, and solo dialysis isn’t for everybody. I hope I didn’t give that impression. You also mention a personality trait of one being a daredevil. By definition, that would mean that the person has decided to take a risk, whether that was analyzed before or not, and the consequences. Evel Knievel used to jusmp motorcycles. He took the risk and often paid for it. Some daredevels pay with their lives – but that was their choice.
You say that people should be capably trained and know how to handle every eventuality. I think you’re aiming too high as no one even knows what every eventuality it. You would be in training for your entire life just waiting for every eventuality to happen in a laboratory environment. That’s just not real life. At a point with enough training you just need to go home and start your home treatments.
If I cramp, I know what to do about it, but if one is careful and doesn’t take off fluid too quickly you shouldn’t cramp. Have I cramped at home – rarely and I dealt with it. In-center I cramped every treatment. If I have a heart attack or stroke during a treatment, I’ll either deal with it or not. I did have a heart attack driving hiome from in-center dialysis, and did all of the right things and survivied. On the other hand I’ve seen people have what appeared to be a heart attack in-center and after the nurses and techs scurried around for a few minutes, they called 911. That’s what I would do too if able – just a bit quicker. But in any event, it’s something I’ve thought about and have decided the risk is worth it.
I cut some of your post to talked just on this part. Like Rich posted , I learned more or maybe should say I gain more of a sense of how to once I got home and had to deal with issues on my own at first(did tx at first myself) and now that Eleanor( wife) is their since I’m doing nocturnal. We together hae come miles away from what my center could ever offer,unless I was there 6 nights a wk. There is only so much a center can show or teach in the time line that they are given. This is why I have and want every center that offers dialysis to offer home hemo, it is not right that my center and the hospital they are with are 50 miles away. In the event of a real need the place I would go to is 3 miles away. But they do not offer home hemo. It just like everything else in life, as you live it the more one should learn…
[QUOTE=Jane;16676]
When you treat solo, how do you deal with the occasional cramp or do you keep your goal so high above your weight that you never cramp? Also, one could have an underlying condition when one gets on the machine and not know it resulting in a heart attack or stroke, so what is your plan should that occur? And one could start to choke if food taken in on the tx went down the wrong pipe. Or one could have a leak while napping ( either dialysate from machine or blood from machine or access) which take quick thinking, so will you be in control if it catches you unaware and you are well on the way to crashing? My point is, these scenarios are not going to happen every tx, but what’s your position should they occur and you are alone?[/QUOTE]
Excellent Point! I recognized these dictatorial medical practices the first year are started dialysis over 20 years ago. This problem is not isolated…it is systemic. And it has to be as a result of their training.