Jane writes:
To get into perspective, how often would you say your machine has broken down since you started home txs
Unfortunately, Jane, that is not a question that has a simple answer. Technically, Bertha has only had 2 instances where she actually “broke down”. Both instances were due to a valve that started leaking which caused Bertha’s internal line checks to fail. In both of these instances, a tech got out to me the same day the valves leaked and was able to replace the valves in a couple of hours. Unfortunately, I had to miss my tx on both of those days because Bertha had to go through her entire 13 hour regeneration cycle in order to disinfect herself because the leaks caused a break in her internal integrity. (That is an example of one of the safety features built into the PHD - if Bertha didn’t disinfect herself after the valves were replaced, there would be a good chance that something bad would have got into her closed system.)
All of the other times that Bertha was down, she was not really “down” in the sense that something was broke. Her internal sensors detected that the conductivity of the dialysate did not fall within the allowable range (the allowable range is determined by the bicarb and acid bottles you use for your prescription). The reason behind these "low conductivity error"s was that Bertha was not getting all of the bicarb out of the bicarb bottle, and as a result, the dialysate was missing some bicarb which caused the conductivity to be low. The fix for evey one of these low conductivity errors was to have a tech come out and force a re-mix of the bircarb. Once all of the bicarb was re-mixed into the diaysate, the conductivity went up into the allowable range and Bertha was able to pick up where left off in her regenertion cycle when the error occurred, and I was able to treat about 1 1/2 hours later.
These “low conductivity errors” unfortunately happened about 3 times/wk for a period of about 6 weeks. They didn’t start happening until I had my dialysate prescription changed after I had been using the PHD for about 2 months. It was a real pain in the a** having to deal with this problem as many time as I did. I was told by my tech at the time that the mechanism that pierces the bicarb bottle in order to mix the dialysate was faulty. I had that mechanism replaced twice, with no improvement. Then, a software patch was released from Aksys to solve this particular problem. I had the patch installed in Bertha, and it has pretty much solved the “low conductivity error” problems. Ever since Bertha got the patch, she has had only 1 “low conductivity error”, which required a tech to make a house call to re-mix the dialysate.
Jane writes:
Do you call the Aksys tech directly when there is a machine problem or does your unit nurse make the call?
Whenever anything happens to Bertha that requires technical help, I call the Aksys tech support hotline. This hotline is available 24/7, 365. The person I speak with on the hotline takes down the basic information about my problem. If it something they can walk me through over the phone, then that is what happens. If requires a visit from a tech, the hotline representative relays the info to the person who is handling my region at that time. If it is during the week, the info gets forwarded to my usual tech. If it is on the wekend, it gets forwarded to the person on call for my service area. If I remember correctly, the techs are on call from 7:30am - 7:30pm. If something occurs before 7:30am that requires a tech support visit, the hotline passes the info off to the tech who then calls me back when they come on-shift. If it is after 7:30pm, the tech gets the information and, depending on the work habits of that particular tech, either calls me back right away or waits until they come back on-shift the next morning.
The people manning the hotline can do basic troubleshooting over the phone. Unfortunately, there is not much they can do if an actual error occurs that requires a tech to make a house call.
Jane writes:
Are you informed the approx. time a tech will arrive or must you cancel your plans for the day to wait for the tech to show up?
After I make the call into the hotline informing them of the problem, the tech that receives my information then calls me back (I’ve never had to wait more than 30 minutes for the call-back from a tech). Together, we figure out what time would work best for them to come over to service Betha - the service time depends on what other service calls, if any, they have ahead of me, how serious my service call is in relation to other service calls they already have, and where they are in relation to how long it would take them to get to my house. Agreeing on a time for them to come over to my house alleviates my having to cancel the entire day and just sit around waiting for them.
Jane writes:
About how much time does the tech spend in your home repairing the machine?
The length of time the tech spends repairing Bertha depends on what the actual problem is. If it something as simple as re-mixing the dialysate to bring up the conductivity, they are usually here for only about 30 minutes. If it is something more involved liked finding and changing a valve that has failed, they could be here for several hours. It really just depends. There is no set amount of time for every single service call.
Jane writes:
If you have to go into the unit, do you stick your own needles ( think you said you have a leg access, but would home patients with buttonhole use their buttonholes incenter?).
Yes. Yes. Yes. I have been accessing myself for over a year now; I started doing it while I was still in-center. I even developed my buttonholes while I was in-center, so naturally I am going to utilize my buttonholes if I have to go back to the clinic for an “emergency” treatment.
But, that is my choice, which is based on my belief that no one can cannulate me better than I can. If, for some reason, you did not want to access yourself at the clinic, then the staff at the clinic can always do it for you if you want them to. If you are going to access yourself and you access using buttonholes, just make sure that the clinic has blunt needles. If they don’t, make sure to bring some from home to use at the clinic.
Jane writes:
You said that you at leaste have a tech for your state. Is it even worse for home patients who do not have a tech for their state?
Like everything else - that depends. How close is the closest tech? Would it be feasible for them to catch a plane and be at your home that same day? How busy, in general, is that tech? Would they normally be able to leave their region in the same day, or will they most likely have to “work you in” as soon as they get a break? How serious is your service call? Is it just a regular maintenance trip, or is your machine completely out of service until they get over there and fix it. How long has it been since your last tx - has it been 1 day, 2 days? Are you able to get into your clinic that day if the tech can’t make it out to your house?
After my local tech stopped working for Aksys, I had a service request that needed a technician. I called in my request to the hotline that morning, and I had a tech from Seattle at my front door by early that afternoon! That was a pleasant surprise for me. It just so happened that he was free that day, so Aksys dispatched him over to TX to help me out.
Jane writes:
But really, does the PHD break down anymore than other machines or is it that the techs are not as closeby in all areas?
Actually, from what I have heard from others on this forum, the PHD does, indeed, require more service calls to keep it up and running than the other machines.
I think I know the reason for this. Basically, it’s because of the immense complexity of the PHD compared to other home dialysis machines. I’ve said before that I am a Computer Science Engineer. I’ve seen the internals of the PHD and I’ve seen some of the software code that runs the PHD. Believe me - this is one complex system. This compexity is a direct result of having the PHD do so many of the tasks that other machines require you to do by hand; I believe this complexity is the reason that the PHD requires more service calls than other home dialysis machine.
It is a definite trade-off: incredible ease of use vs. less complexity in the machine; re-use of blood tubing sets and kidneys for up to 30 days vs. having to change the blood tubing set and kidney after every tx; incredibly short training period (~3 weeks/4 hour days) vs. lengthy training period (~6 weeks/8 hour days); hardly any space need for storage of dialysis supplies vs. a significant amount of space needed for storage of dialysis supplies; the llst of benefits of the PHD just goews on, and on, and on …
But this list of benefits of the PHD compared to other machines just makes you go right back to the statement I’ve seen so many times on this forum: you need to chose to dialyze with whatever modality you feel suits you best.
For me, there was no question when I read about my machine choices for home dialysis. Even though I was told up front that the service needs ot the PHD were considerable when compared to other home dialysis machines, for me the benefits of the Aksys PHD far outweighed the increased need for sevice. But the choice of which machine to use is something that only you can answer for yourself. I realize that most people are limited in choice of machines to only those machines that their clinic supports. Unfortunately, some people’s clinic only offers home dialysis using 1 machine. But if you have multiple machine options, then you just have to weigh the pros and cons of each machine and pick the one you feel suits your needs best.
Jane writes:
It upsets me to hear that Aksys does not provide better/consistent service like you had when the tech was local. It seems to go without saying, that for dialysis patients, missed txs should not even be in the equation. Good service is essential.
I agree that good service is essential for home dialysis patients. However, I don’t agree that “missed txs should not even be in the equation”. As much as I hate to have to get an “emergency” tx in-center, at least I know that is an option that is always there if I need it. Aksys did not “drop the ball”, so to speak, by losing the tech that was local to my area. It is just one of those things that happens in the business world. At least I do have another tech to support me. She may not be able to respond as quickly as my local tech did, but she definitely reponds within a resonable time frame.
Aksys is still trying hard to expand its market share into new regions. They are a very young company in the world of home hemodialysis. Right now, the number of techs they have is limited by how many patients are actually using the PHD, and where those patients live. I am confident that once Aksys gains a broader market share that the availability of techs will improve exponentially.
I am also confident that Aksys is desperately looking for a new tech to be based in Houston so they can hire and start training this person. I imagine the travel costs of my current tech, having to drive between the Waco/San Antonio/Dallas/Houston areas, are inordinately high for Aksys to sustain on a permanent basis. Don’t forget about the costs of having to fly a tech from another part of the country into Houston.
If Aksys didn’t care about thier patients, I don’t believe they would be placing this incredible amount of stress on their techs in order to provide timely service to the Houston area.
Eston Burciaga
