Confessions of a Home Hemodialysis Caregiver
Kidney failure and its requirements
When someone you love is in kidney failure, he or she has only a few options. Unless a donor is available and a good match, kidney dialysis will eventually be required. The kidneys do not only filter toxins from our blood. They also help to regulate blood pressure, protein levels, potassium, phosphorus, and many other essential factors that keep our bodies healthy. There are several options for dialysis, including peritoneal and hemodialysis. I am a caregiver for home hemodialysis (filtering the blood through a dialyzer), and will be addressing this mode specifically.
Choosing home hemodialysis
Home hemodialysis has many advantages. Among them is convenience: you choose when to do treatments, you can change days around to accommodate work or events, and you can even travel with the cycler. Empowerment is another reason to choose home hemo. While you take a big responsibility when you choose this modality, you also become the one making a lot of decisions about the patient's care. And who knows the patient better than him/herself, and their care partner? You become a renal and dialysis expert, and your medical team will come to regard you as integral to the health of the patient. Perhaps most importantly, health outcomes for the patient exceed other forms of dialysis.
Overview of the Nxstage System
While Nxstage is not the only home hemodialysis system available, it is the one with which I am familiar, and any others will be similar enough that this should be relevant to anyone considering home hemo. The Nxstage system consists of the cycler (the machine that processes the blood and cleans it), and the PureFlow, a machine that utilizes dialysate concentrate to make sixty liter batches of dialysate for use in treatments. Bags of ready-made dialysate are an alternative to the PureFlow system, and some people prefer to use them.
Videos below will take you through the entire process of one dialysis treatment. This machine removes fluid from the blood (since the kidneys either work poorly or not at all, fluid tends to build up in tissues and can cause such conditions as congestive heart failure) as well as toxins that are normally removed by the kidneys. If there is no excess fluid, the machine can be set to remove toxins only. The amount of fluid to be removed is determined by what is called the "dry weight," which is simply the patient's weight with no excess fluid on board. This is why the patient is weighed before and after treatment.
For more information on Nxstage, please click here.
Training: Don't be intimidated!
Before a patient starts hemodialysis in-center or at home, he/she needs to have an access called a fistula (a surgically created vascular access that provides blood flow), or a catheter, which allows access directly into a vein, usually in the neck. A fistula access needs to be established at least several months before it should be used. We use a fistula, and my husband has what are called buttonholes. Buttonholes are established needle tracks, allowing the same vein to be accessed each time dialysis is performed. The advantage of buttonholes is that we use a blunt needle rather than a sharp needles, which minimizes the chance of infiltration (the leakage of blood into tissue due to venous puncture). Infiltration can be quite painful for the patient.
When you make the choice to do dialysis at home, your nephrologist will set you up with a nurse trainer, who will meet both the patient and the caregiver (a caregiver/partner is required by Nxstage). He/she will assess your situation and determine your suitability for doing home hemodialysis by talking with you and visiting your home. During the home visit, you will work with your trainer to determine where you will set up the cycler, plumbing and drain, and storage space for supplies.
Then the fun begins! I have a background in health care but I was still daunted by the training to be what is essentially a dialysis technician. We were fortunate to have a nurse trainer who was patient, kind, and good at explaining things to us. You will learn how to use the cycler, and be trained with both the dialysate bags and the PureFlow system (which uses concentrated dialysate solution to "make" dialysate for treatments). Which you use is really personal preference. The bags are 5 liters each and hang on a pole above the cycler. I prefer to use the PureFlow, but the choice is yours.
As caregiver, you and your patient will be learning simultaneously how the cycler works, how dialysis works, and what you need to do to perform treatments. It is overwhelming at first, but everything works together. You are required to keep a flow sheet as you perform treatment (which takes around 2-3 hours). On this flow sheet you will record absolutely everything: lot numbers of cartridges and dialysate, time, date, blood pressure, weight, temperature, and numbers taken from the cycler as treatment progresses. You will be taking blood pressure readings every half hour. Your trainer will be explaining everything to do as the treatment is performed, including showing you videos and giving tests.
Like most people I was apprehensive about inserting needles into my husband's arm. Honestly, this was the least intimidating part of the training for me once we started. Using a blunt needle and having an established buttonhole, needle placement was and is relatively easy. The hard part at first was learning the cycler and its nuances, including the dreaded alarms. When you begin treatment, there are numbers that you have to program into the cycler. These include the volume of the dialysate you will be using, how much fluid to remove from the blood, and the rate at which it will be removed. Once treatment begins, you will record venous and arterial pressures from the cycler, as well as effluent (waste) line pressure.
The cycler has many, many alarms that it will give you when it senses something is not right. You will receive extensive training on what the alarms mean and how to resolve them. Basically it is a warning system to keep the patient safe. Most of the time you will have a kinked line or a closed or open clamp. These are easily found and fixed. Others will require a bit more detective work. Sometimes the needle lodges itself against the vein wall and will cause a high pressure alarm. In this case you will need to adjust needle placement. Most of this sort of alarm will be resolved initially as you train, but bodies and veins change all the time and your cleverness will be tested.
Typical training is around four weeks, but your trainer will decide when you are ready to leave the training facility and go home to work on your own. Be sure to let your trainer know if you don't feel that you are ready yet - have a good understanding of what you need to do, and know also that someone is always available by telephone to help you.
Using the Nxstage System One Part 1 of 3
Nxstage part 2 of 3
Nxstage part 3 of 3
Once you are home . . .
So you've completed training, the system has been delivered to your house, you're all set up and ready to go. There will be butterflies even though you know what you are doing, and no doubt you will make mistakes. The good thing is, the Nxstage system is set up so that it will prevent you from doing anything truly heinous. Those alarms are annoying but they serve to teach you and make you a better care partner.
Taking on the responsibility of home hemodialysis is huge. You have to be committed to learning as much as you can about kidney disease and how best to manage it. You will learn things you never even knew existed, and you will become intimately knowledgeable about your patient's blood tests, pressures, and much more. You will have a team of professionals cheering you on, and they will be thrilled that you have the love and determination to do this for your loved one.
I'm here to tell you, though, that it is not all accolades and self-satisfaction. If you're like me and work a full time job, coming home to perform a dialysis treatment is difficult. You're tired, you just want to rest and recover from your day. It takes a reset of your life in every way imaginable to take on this additional job - because that's what it is. You find a way to make it work. You get your patient started on treatment and you can make dinner, do dishes, fold laundry - or you can be like me and just sit with him and watch TV!
Kidney disease and dialysis are not fun for the patient; he or she has undoubtedly been angry, sad, and felt desperate and alone at having to be dependent on a machine to survive. Some will feel guilty that you "have" to do this for them, and beat themselves up over it. Some will take their frustration out on you because they don't feel well and are frustrated by the entire misery of kidney failure and dialysis. Being a care giver is not easy at all. You do have the satisfaction of knowing that you are helping the one you love, but you are also robbed of time for yourself and time with your loved one that you could be enjoying were it not for having to do dialysis. I have been and continue to be challenged by all of the above scenarios.
I won't lie and say it's all worth it every day - because there are some days I just want to walk away and tell him to go back to the dialysis center. Other days, I am so grateful that we are able to do his dialysis at home, and feel that my ability to do this for him is a great gift. You will undoubtedly feel conflicted as well. Find as much time for yourself as you can, and be sure you have an interest or something meaningful that is just for you. If you need to, seek out a support group for caregivers - they are the ones who truly understand what you do and all the emotions you feel.
The rewards of being able to do home hemodialysis are huge, but so are the responsibilities.
Thinking of doing home hemodialysis?
If you are considering starting home hemodialysis or switching from another modality to do it, here are some considerations for you.
1. Search your soul. Ask yourself if you are truly prepared for the responsibility and the time required to do dialysis at home. You will need about a month of training for around five hours five to six days a week.
2. Ask those in the trenches. Talk to people who are doing home hemodialysis (your nurse trainer should be able to put you in touch with them). Ask any questions you have, and listen closely to what they tell you. This is going to entirely change your life.
3. Get informed. Go with your loved one to his/her appointments with their nephrologist as often as you can. The more you know and learn about kidney disease, the better prepared you will be to be a great care partner.
4. Communicate. Be honest with yourself about your capabilities and limitations. If you have health issues yourself or other extenuating circumstances that will interfere with your ability to be a home hemodialysis care partner, voice them to your partner.
5. Keep things in perspective. Yes, it's unfair that you and your partner have to do dialysis while other people are out having fun. But we don't know what challenges others are dealing with - if we knew, we might not want to trade despite what we have to do.
6. Find support. Let people help you if they offer. Join an online dialysis support group, or find a live one in your community. Talk openly with your nurse trainer (he/she will still be in your life after you have begun the process at home). Be kind to your patient/loved one and help him/her find the support they need as well.
7. Make time for fun. You may be committed to five or six days a week of dialysis, which can become drudge-like very quickly. Find ways to get away or distract yourself with something fun. You can even do this while your patient is being dialyzed! One evening we were laughing so hard at something on television that the treatment ended without me realizing we were that close to being finished - I had to scramble to wash, glove up, and remove the needles. We had both forgotten that he was even on dialysis.
8. Look at the big picture. You feel unappreciated, tired, like a robot going through the motions. Then you get your patient's lab results - they are excellent! He/she has a clinic visit with the nephrologist and gets a stellar report. These are the rewards for what you do. Better health for your patient means a better life for both of you. When he/she is healthier, that means fewer hospital/doctor visits, more time doing fun things, or even just more time doing normal things. Yes, it's a huge commitment. It is time-consuming. It's emotional. But in the end? It is worth it.