Home dialysis and overwhelmedcarepartner

[kasjaws]

I am the care partner for my wife on NxStage inhome dialysis. We started training Dec5 and got signed off on Dec 18. We were model students as we have been planning for this for years and we are generally comfortable with it. Comfortable with the process and what I need to do. However I am overwhelmed by the iriplications and the responsibility that is now on my shoulders and not the center staff. We also did not anticipate how much time this would take.

My spouse has rheumatoid arthritis and is unable to stand or walk much. There for the entire process of in home hemo falls to me. I get up about an hour or so before her to set up the machine and all my supplies. Then we run about 3and1/2 hours. Then I have to break down the machine, drain the remaining dialysate (2 hours) and then prepare and make a new batch (5 hours). I am completely overwhelmed as I am on disability myself with psoriatic arthritis. I cannot get anything else done...the house is a mess, the laundry is piling up, we are in box hell and I am exhausted.

Please tell me it gets easier.

[dac0214]

Sounds like your situation makes you a very poor candidate for HHD. I'm certain that the insurance company was more than happy enough for you to offer to suffer most of the burden for caring for your partner, after all, if you hadn't volunteered, they'd still be paying for it. I considered HHD myself, but could see myself getting stuck into spending hours and hours on end just to remain alive. Even Stumpfer, the local "HHD guru" spend twice as many hours in the dialysis chair as the average in-center patient does, and yet he seems happy with it. I wouldn't be, and it sounds like you aren't, either.

Better talk with a social worker, and get yourself out of this nightmare before it drives you bonkers. It will only get harder.

[stumpr54]

Hello kasjaws,

Two weeks of training for HHD (Dec 5 through Dec 18) would not have been an acceptable amount of time for my HHD clinic's training process. The short duration for training could be reason for part of your challenge. My HHD trainer at the get go, said that it would be a minimum of three weeks and could push five weeks. I had issues with the functioning of a 9 month old, but new to hemodialysis AVF, which caused me to loose two weeks of training with my care partner spouse. We started training in mid July 2012 and did not "go home" until just after Labor Day.

I will presume that arterial access issues are not a concern for you. While several of dac0214's points are quite valid, he is overlooking the combination of treatment time scheduling flexibility and the greatly enhanced health benefits of HHD in return for the additional treatment time. A typical in-center MWF patient can and will experience significant toxin and fluid build up between the Friday treatment and the Monday treatment. This build up leads for more frequent hospitalizations and other medical complications. The travel logistics, inflexible scheduling, and the separation from home and family associated with in center dialysis additionally causes many of these patients to "skip" desperately needed treatments, which further compromises their health.

Regrettably, your wife's and your respective arthritic conditions make the manual intensive elements of HHD more difficult, but not to the point where it prevented you from performing as "model students" during your HHD training. Whatever you demonstrated during the HHD training that earned that "model" label, simply needs to be translated into your home environment.

The early days of HHD at home are challenging, e.g. assimilating the routine and becoming proficient through the weekly practice. Set up of the NxStage System1 Cycler along with needed supplies should take no longer than 20 to 30 minutes, taking advantage of the cycler's 15 minute prime cycle.

I am mystified by your need to drain the Pureflow SL's dialysate after each treatment (2 hours) and make a new batch. The NxStage dialysate 60 liter SAK will actually produce 64 liters of dialysate over the span of 7 hours. You clearly need to work with your wife's nephrologist to develop a treatment plan that permits her to treat with 32 liters and thus, get two treatments per SAK and not waste a drop of dialysate that you produce. That two hours of drain time is wasted dialysate that you paid for the electricity and water to produce and the electricity to run the PureflowSL pump to drain the unused portion.

My HHD trainer expected that based on my height and weight that I would be able to achieve acceptable clearance (KdT/V of 2.0 or greater) with a 20 liter treatment, taking about 1 hr 45 minutes. This did not prove to be the case, and a 25 liter treatment was required. With the NxStage SAK producing 64 liters of dialysate (not close to divisible by 25), I suggested 30 liter treatments 5X weekly. In learning that the NxStage Medical SAK produces closer to 64 liters, I changed my "script" to 32 liters, recognizing that "more dialysis" is better.

I have worked full time during the past 2-1/2 years of HHD and my care partner/spouse has worked part time. We started with a treatment plan/schedule that had us performing treatments on Sunday, Friday night, and Saturday, along with two nights during the work week. Getting home after 5:00 pm, having dinner, getting a walk for exercise after dinner, setting up the machine and completing a near 3 hour treatment was difficult and led to a couple late nights (past 10:00 pm) during each work week. All of that changed when I participated in a use of the NxStage System1 cycler and Pureflow SL for nocturnal HHD for NxStage from April 2013 through June 2013. My care partner/spouse was 56 and I was 58 when we started HHD.

We now perform a mix of short daily and nocturnal treatments from Sunday through Thursday and take off Friday and Saturday. My toxin build up and fluid issues with the two consecutive days off are negligible owed to the great clearance I get from the 23 combined hours of nocturnal (16 hours) and short daily hemodialysis that I get over the 5 day span.

I will always conduct consecutive treatments before pulling my monthly labs, and will generally run one or two nocturnal treatments in succession prior to pulling labs to achieve excellent phosphorus and potassium values as well as clearance above 2.5. In response to these results, my nephrologist was more than willing to revise my HHD prescription to an alternating 5X, 4X weekly schedule, allowing me to reduce my number of treatments by 10%, e.g. 18 per month vs. 20 or 216 vs 240 annually.

We too had plenty of time to plan for HHD. During that "planning time" we set up a spare bedroom as our dialysis room, with hard plumbed water and drain (I did the plumbing) for the Pureflow SL, dedicated shelf space for about two weeks of treatment supplies and baskets on those shelves to contain small treatment supplies. While a good deal of what makes us productive in conducting HHD treatments was addressed before "we came home", that much more was added as we conducted treatments and looked for ways to reduce/eliminate waste and variation.

I purchased an over the bed hospital table w/wheels ($50 on Amazon) that secures my chux and all small treatment supplies, BP monitor, etc., that has been invaluable for efficiently and effectively performing HHD treatments. I secure my blood line with three elastic Velcro straps to my forearm AVF access arm, which permits free movement and use of that arm during daily treatments and prevents line entanglement during nocturnal treatments.

I utilize my awake treatment time working on desk top or lap top computer, watching DVD's or network television with my care partner, listening to music, reading the newspaper or magazines. paying bills. I never, "just sit there" during a treatment as I queue up things that I can do while sitting. I may revise my weekly treatment plan to account for the time I will be watching the NFL playoffs for the next two weeks on Saturday and Sunday. NFL season is a great time, as it has me treating on Sunday afternoons during game time rather than Sunday evening.

Do not expect to get to where we have gotten overnight. Like any new activity/task, it will take practice to become more effective, and develop the organization and scheduling skills that will significantly reduce the burden of performing HHD treatments and deliver all the associated physical and mental health benefits.

[kasjaws]

Thank you both for the responses. I DO think we are good candidates for HHD if I can get the rest of life organized. Before HHD Kassie was incenter T/TH/Sat from 6:00am to 11or so. We had to get up at 445 am to do this. My wife is a large woman and her time on the machine in center was 4 hours or more. With HHD we are averaging 3.5 hours 5 X week. Dac9214 - this is really about how she feels and how to keep her healthy and alive not about me. I came here to vent because I am overwhelmed but as long as she is benefitting from it I would not go back to the incenter.

We were trained in our home. My trainers were well aware of my disability and looked for ways to make it easier for me. I sit when I disconnect the access, I sit when I load a PAK, make a batch etc. It is not the dialysis time that is the issue for me. It is the set up/tear down/drain bag etc. that just adds to what I was already doing. For the past few years we have lived with the situation where I do the cooking, laundry and cleaning. This is what I struggle with. The house is a mess because I am so tired when her session is over.

Stumpfer: We were told 4-6 weeks of in home training. But I spent over 20 years in bloodbanking. The process was not new to me. The sticking was not new to me. We both grasped the concepts quickly and our trainers are instantly available by phone. I called one last night in fact as it was my first time replacing and priming a PAK by myself. It turned out to be very easy.

I do think I will get the set up down to half an hour using the 15 minute prime time. This will help a lot as I get more confident and more speed. I currently use the primetime to get my heparin and saline syringes ready and get her settled and her vitals. When the prime is done we are ready to snap/tap, program the cycler, connect and go. We do not do any nocturnal and no one has offered that as an option. What happens to your have hour recording info if you are sleeping through the process?

We have to drain the bag because Kassie's prescription at the moment is 40lb 5 X week. We are working with a 60 lb Sak so we have to drain 20lbs every day before making another batch. I don't foresee this changing. I really like your schedule but as I said no one has mentioned nocturnal to us. We will ask at the January care team meeting. Also our clinic does not allow for two days in a row off, even when your prescription is 5days. So right now we are running from 10-230 Monday and Tues, Off Wed, Run Thurs-Sat and off Sunday. We also have a dialysis room with shelves stocked with current supplies and another room just for the storage of supplies. I hope this is just a difficult beginning because Kassie is doing so much better health wise with this. Thanks for listening and for the support

[stumpr54]

Hello kasjaws,

Thanks for the information rich response. Your prior medical background served you well toward streamlining the training but was not preparation enough for several of the key logistical challenges of HHD.

I presume that the 10-2:30 pm run time makes the most sense for your household schedule. Those being prime daylight hours, would not make them my first choice - when I could be engaged in outdoor activities. I prefer evenings for treatment, after dinner, which is a natural unwind and downtime period for me, even when not working. Unlike many hemodialsyis patients, I do not experience lethargy after a treatment, on the contrary, I feel energized. If your wife is like most hemodialysis patients, her energy level is diminished at the conclusion of treatment. If she is inclined to take a nap or engage in inactive downtime after treatment, concluding treatments at at time closer to her normal bedtime would make a great deal more sense than concluding treatment in the middle of the afternoon.

The scheduling flexibility of HHD is one of its chief benefits that you may be overlooking by selecting a daily treatment time that is reflective of typical in-center, e.g. between the hours of 5:30 am and 6:00 pm. In-center treatment scheduling would generally limit your wife to one of two appointment time/range options - 5:30 am to 12:00 pm or 1:00 pm to 6:00 pm. In the case of a dialysis center that is open until 8:00 pm or 9:00 pm a third option of 2:00 pm to 7:00 pm would be possible. None of these time options are viable for my work schedule. As a result, under 5% of the nearly 650 HHD treatments that I have performed would have fallen within the hours of 5:30 am to 7:00 pm.

A NxStage nocturnal hemodialysis treatment/flow sheet requires only a few readings at the start of treatment to verify stable values. I will generally take four readings in the span of 15 to 20 minutes, with one at the start up blood flow rate of 200 ml/min, and the balance at 300 ml/min. I will run either 32 liter or 40 liter treatments nocturnally, and never have had to increase the blood flow rate beyond 300 ml/min to accomodate dialysate rates of up to 5.5 liters/hour. I adjust the dialysate rate (with the target dialysate volume) to achieve between 6 and 8 hours of dialysis.

I have run the full 64 liters during a nocturnal treatment prior to depature for business or vacation in order to avoid the expiration and needed disposal of the unused dialysate. I have been a process improvement professional for over 30 years and waste of any kind is abhorrent to me, and as I was taught during HHD training, you can never get too much dialysis.

Your wife's dialysis prescription of 40 liters, while currently that needed for the proper clearance, presents not only a vicious waste of 33% of the dialysate that you produce, but is also a huge time waster, requiring two hours to drain the remaining 20 liters and the added time to set up and run a new 60 liter batch five times per week. You are also expending 5 SAK's per week versus 2-1/2 per week - 50% additional cost for the SAK's alone, requiring receiving and stocking some 10 cases per month versus 5 cases per month.

I would press your wife's nephrologist to consider 32 liter treatments to avoid the waste of dialysate, running 5 batches and 5 SAK's per week instead of 2-1/2 SAK's and 2-1/2 batches per week, all contingent upon you wife achieving acceptable clearances with 160 liters of dialysate processed per week. The 160 liters per week would represent a 20% reduction in the volume of dialysate as well as a comparable reduction in the dialysis time.

Another option worth considering is to go to 6X weekly treatments at the 32 liter per treatment. This would produce a reduction of only 3% in dialysate volume and dialysis time in contrast to the current prescription. The time spent conducting one additional treatment per week should be handily offset by the time savings experienced from producing batches per week and no drainage of unused dialysate.

The best option would be to substitute nocturnal dialysis for select or all of the weekly treatments. The slower dialysis employed in nocturnal treatments is far more effective in removing toxins, and less traumatic in the removal of fluids. The additional training required to conduct nocturnal treatments is less than one hour. The expected improvements in clearance from nocturnal treatments would likely be more than sufficient to permit the change to a 32 liter/treatment prescription 5X or if needed 6X weekly. I was achieving clearances of 2.1 and 2.2 with 30 liter daily treatments and now routinely exceed 2.5 with 32 or 40 liter nocturnal treatments.

When you draw your wife's labs make sure it is done on a day that follows several prior days of treatment. Your current treatment schedule would have to modified for the lab draw week, as you cannot draw on Saturday after Th and F since the FedEx delivery to DaVita's labs in Florida would sit until Monday and be discarded as expired (24 hour expiration). Drawing on Tuesday would produce only a single treatment prior to the pre-treatment draw - may not be enough.

The only time my labs went out of the Green was when I pulled on the first treatment day after my days off. I quickly found that the more treatment days I could get in before I did my draw, the better my lab results. My dietician and nephrologist are keen to my process and recognize that this is one of the many benefits that HHD has over in-center and is a way to legitimately "game" the lab draw and results requirements.

I also found out that while my phosphorus and potassium could get pulled to the minimum levels, my albumin got pulled down as well, especially after successive nocturnal treatments preceding the lab draw. I've since "dialed back" the number of days of nocturnal treatments prior to my lab draw and as a result have been able to consistently keep my albumin level above 4.0. Recognize that your wife's lab results are going to drive your wife's nephrologist's prescription more than anything else because it is practically the only objective evidence that he or she can reference as the result of his/her prescribed therapy.

[SimonDog]

I question the wisdom of playing games to pull labs when they are the "best". This is great for your centers stats, but I'm more concerned about making sure my labs are within acceptable range even after a day off.

As to waste - they make 40L: and 50L saks, however, the 40 lactate concentration I use is only available in 50L and 60L. I'm on a short daily 40L Rx and waste 10 (I have the system 1 that only goes to a 12L/hour flow rate, so a 50L Rx is time prohibitive), but will be using the entire sak once I go to home nocturnal.

[dylserindira]

My fiancee is due to start hero dialysis in two weeks. Even though we knew this was coming; it is nevertheless scary and sad.

[KelseyAtDaVita]

Hi dylserindira, welcome to myDaVita! I'm sorry to hear about your fiancee but wanted to let you know that the myDaVita community is here for you. There are many care partners here to connect with as it often helps to know you're not alone. Don't hesitate to reach out if you have any questions!

Wishing you and your family the best,
Kelsey

[moodyc]

I am the care partner for my wife on NxStage inhome dialysis. We started training Dec5 and got signed off on Dec 18. We were model students as we have been planning for this for years and we are generally comfortable with it. Comfortable with the process and what I need to do. However I am overwhelmed by the iriplications and the responsibility that is now on my shoulders and not the center staff. We also did not anticipate how much time this would take.

My spouse has rheumatoid arthritis and is unable to stand or walk much. There for the entire process of in home hemo falls to me. I get up about an hour or so before her to set up the machine and all my supplies. Then we run about 3and1/2 hours. Then I have to break down the machine, drain the remaining dialysate (2 hours) and then prepare and make a new batch (5 hours). I am completely overwhelmed as I am on disability myself with psoriatic arthritis. I cannot get anything else done...the house is a mess, the laundry is piling up, we are in box hell and I am exhausted.

Please tell me it gets easier.

I have been doing the same thing for four years for my husband. It has gotten easier. Do your chores while she is on the machine. My crockpot is a time-saver for meals. Your social worker can get you in touch with agencies to help you. I put myself in my husband's place. He needs to see I can handle it.

[Terrascout]

Lacking knowledge.

Are there any options to help get into Home and or Nocturnal Dialysis?
That was the original plan after talking with the Doc early this year. However, when I first stated this summer my fistula was not developed enough and I started in the hospital. I figured it would be good to start at the dialysis center once out of the hospital so we could get better understanding of what was going to be involved. Well since I could drive myself my wife never went to the dialysis center and after 2 months decided she was out. So my wife/potential care partner is out of the picture. Does this leave me with little to no option for better health and result from Home and or nocturnal dialysis?

[Deborahg1]

My wife is now in training for home dialysis. They told us it would be. 4 week class and would make sure we were comfortable in using the machine before we start on our own. I ha CHF also so my wife will be my care giver. From my understanding I will use it at night for a total of 9 hours. Would have to change the bag only once and the machine will do the rest. We know about the alarm and also if no fluid flows the alarm goes off. We’re both scared but I have to believe I will feel better once we start

[katiejai32]

Hang in there and vent when you need to. we are listening