For those of you in home programs, minus a partner, what are the risks as to what could possibly go wrong that you might not be able to handle yourself? What are the risks of nocturnal as opposed to daily? I am referring to a loss of conciousness, blood leak etc.
Some people feel the risks are high, but I don’t, provided you are in pretty good general health to start with.
Most people have no serious problems when on dialysis. Blood leaks cause the alarms to sound and seldom happen. I did manage to dislodge a needle once but I had been fiddling with it due to pressure alarms and hadn’t realized it wasn’t inserted all the way.
My pressures don’t go that low so haven’t worried about falling unconscious. I would think the likelihood of that happening is also minor provided you aren’t removing great quantities of fluid. You can set the Fresenius to check your blood pressure on a regular basis and it will alarm if it goes too low.
People warn of risks of getting air, but again, the machine alarms and clamps shut long before air would get to you. Only time I’ve ever had air alarms are at start up or getting off if I forget to open one of the clamps or turn off the pump (which has happened twice I thinK), neither time did air get anywhere near me, the machine alarmed and clamped down immediatiely.
Helpers would be made aware of problems just the way the patient would be, alarms. Helpers generally don’t sit next to you for the whole treatment watching you, they leave the room and get their own work done, or in the case of nocturnal, they sleep. I feel the biggest risk would be heart attack or stroke, but those things could happen whether or not I was on dialysis.
Personally, I can’t sleep on the machine, I just can’t get in a comfortable position, as I am a side sleeper with an upper arm fistula, plus I would be more concerned about pulling a needle (although you can tape better than I do, but I am somewhat allergic to the tape so don’t like too many pieces of tape). My clinic believes that doing nocturnal without a partner is safer than regular dialysis due to the “gentler” nature of nocturnal. The fluid is removed so slowly that the risk of low blood pressure is greatly reduced.
My father is on dialysis and I am his helper we have been doing slow nocturnal for over 4 years and neither of us have trouble sleeping during the treatment. There are 30 patients in our program nothing catastrophic has happened yet. We are advised to put a sensor where blood could leak to alert us.
There was an article from Dialysis & Transplantation Feb. 2004. The article was written by Jim Curtis who stated in his research on writing the article he did not come across a single report of a catastrophic event related to home dialysis.
I think that part of the reason why clnics and companies have in their product information that home hemo patients need a partner is because this is the way it’s been done historically and because the FDA approves machines with the disclaimer that the home hemo patient will have a partner.
I have no idea how many single dialysis patients could benefit from home hemodialysis, but are not allowed to do it because of the “risks.” I suspect the risks of the home hemodialysis for stable patients are not that high. However, with the disclaimer on the machine and with the knowledge that problems do occur in-center dialysis (mostly with low functioning, unstable patients), doctors and clinics are afraid of being sued by family. Since there is a disclaimer on the machine today, it might be hard for the doctor or clinic to offer a good legal defense if they knew the patient dialyzed alone. A lawyer could advise about whether this barrier could be overcome by having a patient (and family) sign a waiver of liability that included a statement of risks.
I wonder what would happen if Jim Curtis shared his information with the folks in the FDA. Perhaps they would allow companies to market some machines in some cases without this disclaimer. Without the disclaimer (or maybe with the disclaimer for unstable patients only), it might make it possible for stable patients to do home hemo alone if they had no partner.
Obviously not all clinics refuse self dialyzers. I know many people across the country do it alone, including thru Lynchburg, Northwest, and I spoke with a doctor in one of Missouri’s units that also felt self dialysis was fine.
I am also encouraged in reading the proposed new dialysis standards that they talk alot about self dialysis (meaning no partner) and don’t caution against it at all.
I think it is a terrible shame and waste that people without partners are discriminated against with no proof of risk. I’m still looking for examples, in stable patients, even in center of someone dying from a “mistake” or even that was saved because there was someone there. They talk about the risk of air, which is nearly impossible with all the safety measures built in the only way I can see you getting any air is if you forget to fill your needle with blood before connecting, or forget to put your lines in the venous clamp and then also somehow manage to get air into the system. Then they go on about the risk of blood loss, well there really isn’t much of a chance, if you have an accidental disconnection the machine will alarm almost immediately and stop and clamp down, as it will if a needle comes out, and I can’t imagine how long it would take to have a substantial blood loss simply from a needle site, and to stop that all you have to do is hold the site. Other than that the risks are strictly health issues, like stroke or heart attack that will happen whether or not you are on dialysis so no greater risk being on dialysis, provided you are in general a healthy patient. I reiterate that self-dialysis is only appropriate for healthy patients (considering they have ESRD that is).
Cathy
I don’t mean to frighten people by this posting, but there have been emergencies in dialysis centers so people want to be sure that home dialysis patients don’t experience problems without someone nearby to help.
For instance, patients have had BP drops that led them to pass out. Staff have “rescued” them by giving them saline and changing their position so their heads were lower than their hearts. However, this often occurs because patients have not been taught how to recognize their body cues and communicate them to staff (or staff have ignored their complaints – I heard a staff member tell a patient she didn’t know what she was talking about when the patient complained of low PB because the machine registered normal BP – seconds later the machine recorded the drop) or staff have set the machine to take off too much fluid at once or more fluid than was there to take off.
A few patients have had heart attacks at dialysis and staff have sometimes (not always) been able to resuscitate them using CPR. In all cases, they call EMTs to come to take over which is the same thing a home dialysis patient would do whether alone or with a partner.
Patients have bled to death in dialysis units with staff in the same room with them. If this can occur in-center it kind of discounts the main reason for having a home dialysis partner in my book. I suspect multipe beeping machines can make it hard for staff to tell which patient is having a problem. Howeverk, staff don’t always respond quickly to machines in-center. They may be short-staffed and taking care of others or not see the importance responding quickly to an alarm. At home, the only machine alarming is yours and you would never ever ignore an alarm knowing your life is dependent on being responsive. You are also taught how to treat symptoms and respond to emergencies. Patients in-center only get minimal training in dealing with fires and disasters, but not problems with the treatment itself.
Patients have bled to death in dialysis units with staff in the same room with them. If this can occur in-center it kind of discounts the main reason for having a home dialysis partner in my book. I suspect multipe beeping machines can make it hard for staff to tell which patient is having a problem. Howeverk, staff don’t always respond quickly to machines in-center. They may be short-staffed and taking care of others or not see the importance responding quickly to an alarm. At home, the only machine alarming is yours and you would never ever ignore an alarm knowing your life is dependent on being responsive. You are also taught how to treat symptoms and respond to emergencies. Patients in-center only get minimal training in dealing with fires and disasters, but not problems with the treatment itself.
How do you bleed to death?? Doesn’t the patient notice that a needle has pulled or a machine is alarming?? When the machine alarms it stops the pump so blood is only leaking out if there was a disconnection and then only at “heart rate” which I would think would take a long time. Now years ago, machines didn’t stop the pumps and the controls weren’t built in so I could see a disconnection (also easier before the screw connections) causing massive loss of blood because there are no alarms, but now I just don’t see how it is possible.
I agree with everything else you said, I truly believe that if you are healthy and well trained you are probably safer than in center or even possibly with a helper as YOU are taking full responsibility for your treatments, YOU pay attention to how you are feeling and what is going on with your treatment, YOU don’t ignore alarms or have to wait for someone to come “rescue” you, etc. The only area you are less safe, in my opinion, is if you have a stroke or heart attack so bad you can’t call 911. But, I still feel these things could happen and probably would happen whether or not you were on dialysis, so the risk is not increased. I am not actually completely alone as I do have a 10 yo who could at least call 911. I also argue that a helper is not generally in the room with you at all times, so it is quite possible to lose consciousness and or have a heart attack or stroke and have no one find you for some time, and I don’t think that your helper should have to sit with you the entire time monitoring your treatment as again, the risks are extremely low. I think all of life is about weighing risks vs. rewards, and that we as patients should definitely have a strong voice in the decision.
Cathy
home self hemo 9/04
I had a friend who dialyzed at home with his wife. He suffered a heart attack as she was taking him off the machine and died. What if he had been alone? He would have still died, but he would have been alone.
Yes, but if you don’t live with someone and die at home, you will die alone that is simply the fact. Obviously having a helper didn’t save his life and I still say he would have had a heart attack whether he was on dialysis or not (although kidney failure may have contributed to his heart condition, being on dialysis probably did not cause the heart attack).