Is Home Hemodialysis Right for You: A Caregiver's Perspective

[okarol]

Is Home Hemodialysis Right for You: A Caregiver's Perspective

By MtShastaWriter
 
My husband has been on hemodialysis now for about five years due to End Stage Renal Disease caused by diabetes. For the past 2+ years we have opted to perform home hemodialysis rather than having him travel to a dialysis center. (The nearest centers to where we live are about 85 miles one way....)

While the dialysis center will give you information to help decide if home-hemo is right for you, I thought I would share my experience as a full-time caregiver in the home dialysis process.

Hemodialysis vs. Peritoneal Dialysis

There are two basic types of dialysis for people who have experienced kidney failure. These two types of dialysis are peritoneal dialysis and hemodialysis. People on peritoneal dialysis typically perform their dialysis at home by exchanging fluids in the peritoneal cavity through a port. People on hemodialysis typically go to a dialysis center and have their blood "cleaned" by filtering it through a large machine.

While peritoneal dialysis is always done at home, only a small portion of hemodialysis patients perform their dialysis at home. The reasons for this are many, but for most people it is because of the possible dangers of doing their treatments at home and because a partner is required to be present the entire time for home dialysis treatments.

IHSS (In-Home Supportive Services)

For dialysis patients in the state of California who are on a combination of Medicare and MediCal, caregivers can receive payment through the IHSS, In-Home Supportive Services, program. This program pays me, as my husband's caregiver, for the time we spend doing dialysis at home. While the pay is horribly low at $8 an hour, it does help to off-set my inability to work outside of the home while providing this necessary medical service to my husband. The program also helps to save the state money by reducing the costs of treatment and travel.

In Center vs. Home Hemo

There are many advantages to doing dialysis at home, not the least of which is that it saves a ton of travel time and wear and tear on vehicles. For people like us who live in rural areas, this time and gas savings can be huge.

Dialysis treatments performed in center is typically done three days each week. For those of us who do home hemodialysis we have to do it six days each week. While some people can get away with only doing their treatments five days a week, most everyone we have spoken has said that they are on the six-day-a-week plan.

Having to do treatment six days a week means that you spend a considerable amount of time dedicated to the process. This leaves little time for other things in your life. A typical treatment lasts about 4 hours with another good solid hour being necessary for set-up and tear-down of the machine itself.

Dialysis Supplies

The other major difference between in center versus home hemo is that when you do your treatments at home, you are then required to do all of the set-up and tear-down of the dialysis machine itself. In addition, you house becomes a storage shed with all of the supplies and machinery necessary for treatment.

We have very hard well water in our area and this necessitates that we hang 30 liters of dialysate in bags for each treatment. We receive a month's worth of dialysate at a time; which amounts to about 90 boxes weighing a total of over 2,000 pounds! While the courier will deliver the dialysate boxes into the house, it is our responsibility to un-box all of the dialysate and hang it each day. We are also responsible for disposal of all of the waste products from treatment as well as all of the boxes. We literally fill a 96 gallon trash cart each week with the cast-offs from treatment. (In addition we have a ton of boxes which we trash, burn, or give away to neighbors to burn.)

Lab Work

In addition to performing home dialysis six days each week, and doing the set-up and tear-down of the machine, we are also responsible for drawing monthly labs and getting them sent off via FedEx. This requires a call to FedEx, drawing the blood, spinning down the blood in a centrifuge, and then boxing it all up for the next day's pick-up. We spend about a good half hour each month dedicated to drawing and sending the labs.

Monthly Clinical Visit

In addition to all of the above, we are required to attend a monthly clinic visit at our dialysis center. (This typically takes all day when you factor in our 170 mile drive...) On this one day, people travel from all the far-reaches of the county and descend on the dialysis center.

The monthly clinic visit typically involves answering health and treatment questions, doing (very lame) patient education, a nutritionist consult, a social work consult, and seeing a nephrologist. We are typically at the center for a good hour or two each month. We are also now required to pick up all of the ancillary supplies we use at the dialysis center, so that takes some time and effort as well. (The two cases of saline bags we get tend to weigh about 50 pounds each...)

Our clinic is very good when it comes to social work and nutrition support. However, the home hemodialysis nursing staff changed a while back and it is now a bit of a challenge because two different people are now in charge of the program. In a system where communication is key, this can be a bit of a pain when something is needed...

The Treatment Itself

Speak with any nephrologist and they will tell you that home hemodialysis is not as efficient at removing waste products from the body. This is the reason that home hemodialysis is necessary six days each week rather than the three days in a dialysis center. The machines in the centers use a ton of water and are more efficient at cleansing the blood than the smaller home machines are.

The time required for home dialysis is definitely a consideration when you are trying to decide between home hemo and in center. The patient has to decide if less cleansing and slightly more damage to the body is worth saving the trips to the dialysis center but doing treatment twice as many times.

Would I Recommend Home Hemodialysis?

The question of whether or not I would recommend home hemodialysis to other people is a hard one to answer. The time it takes to do home treatment is a serious commitment and not one to be taken lightly. In addition to treatment, you are also responsible for all of the other things that go along with the treatment process and being a caregiver.  Before you seriously consider home hemodialysis, please talk with your local coordinator and a social worker to determine if home hemodialysis is right for you.

I wish you the best of health!

[looneytunes]

Great article!  Thanks Okarol.

[Desert Dancer]

Good grief, she makes it sound like a day in the salt mines. And this statement: "home hemodialysis is not as efficient at removing waste products from the body" is simply bass ackwards. Why do all the home dialysis articles I read contain such blatant and easily disproven misinformation?

[motreasures]

Good article...note to self:  see if I can be paid as my Hubbie's caregiver.  We were actually talking about this tonight as my husband got the statement for home dialysis from our insurance and it didn't appear to be much less than dialyzing in Center.  He wants me to get paid too.

I don't know about anyone else, but when we were researching whether to do home hemo (even before he started dialysis) the research said it's about 2 hours a day commitment.  His treatments are actually closer to 2.5 hours and between set-up, priming, waiting for the clotting at the end of treatment (I do clean-up while he's holding his buttonholes)...it's really closer to 4 hours.  Taking pre/post bun labs once a month before clinic day is an extra 30 minutes.  And clinic day for us means traveling at minimum 2.5 hours each way with 3+ hours for labs/clinic/loading supplies/pharmacy visit for heparin & arenesp...though in winter months we actually go and stay overnight because snow/ice can easily add 1 hour each way for travel.

The article also doesn't mention the changes your relationship goes through as husband/wife or significant other/person with ESRD when you start to do home hemo/pd treatments.  When my Husband went to the clinic, I relied on the staff to do their jobs and do it well while keeping him safe and allowing him to keep his dignity & self-worth as a man.  Now, that pressure is on me (self-imposed, with some expectation from my Hubby).  We have to work hard to make sure the disease does not define our lives, but it's "just another thang" 

Having said all that...I would still choose to do home hemo...he can do dialysis and we watch our favorite prime-time shows or a movie.  I'm not worrying about him driving in horrible Northern MN weather in the winter...last winter was bad, this winter is much worse.  Also, the clinic staff is sooo much more attuned to his needs on a very personal level.  We always get an immediate response from the home dialysis team, including the Nephrologist who has responded to concerns on his day off.  Darrell's In-Center staff were nice for the most part, but sometimes he had 3-5 people who would try to put his needles in...he rarely has a problem doing his own needles.  I was also able to put them in on the first try.

Just some additional thoughts...
Mo

[Simon Dog]

And this statement: "home hemodialysis is not as efficient at removing waste products from the body" is simply bass ackwards.

It is true but out of context.   Home hemo with NxStage is less efficient per unit of time, but more efficient when you compare the total NxStatge treatment over the week vs. in center.  If you go with the BabyK, you get the identical treatment as in-center per unit time.