PD and Home HD: Dialyzor-to-Dialyzor Tips for Newbies

Social media can truly be a support system for people who do PD or home HD and for their care partners. One thing we really enjoy doing in the Home Dialysis Central Facebook Discussion Group is mentoring folks who are in the process of training for a home therapy, or in those first few, critical weeks at home. The advice I give out has been gleaned from years of tips that I’ve seen people give to each other, and includes:

• Clear the decks- Anything new can be overwhelming. So, take it easy on yourself. Stop doing anything you don’t have to do. This is not the time to volunteer, host parties, run extra errands, etc., if you can avoid them.
• Call in favors- Have family or friends or your church group offered to help you? Take them up on it! Have them bring over dinner or vacuum or throw the laundry in for you. They’ll feel helpful and you’ll have one less thing on your plate. No one close by to help? Cook a big batch or two of something on the weekend that you can eat all week, or use a slow cooker.
• Expect to feel overwhelmed for a while - Bringing dialysis home is a bit like coming home with a new baby. You are learning a ton of new information, fitting equipment and supplies into your home, and setting up new routines (which can take up to a few months). You WILL feel overwhelmed at times. Knowing that this is normal can help you cope with the changes.
• Ask for help when you need it - Don’t suffer in silence. If you are not sure how to set up your room, keep track of your supplies, or handle a glitch, ASK. Call your home training nurse, the supply company, or reach out to other dialyzers and care partners.

Recently, members of our Facebook group shared their own tips for succeeding with PD or home HD.

Tips for PD Success

• “Embrace the idea that you will be doing this for your own health. Do not miss a treatment and be sure to use sterile procedures to avoid possible problems.”

• “Slowly read each step and then do exactly what the step says. No shortcuts. Try to make a set time to set up , but do be a little flexible with that. I set up about 4PM before I get dinner ready.”

• “My Husband does PD. We had a lot of problems with alarms when he tried to do PD in bed. After many tests, etc. and the doctor & nurses giving up on him using the machine, I moved him to the living room and set him up on the recliner. This has worked for us. Though we would prefer he did it during the night, while asleep, this is better than having to do 4 manuals a day. My advice: Don't give up!”

• “Practice being good to yourself. Whatever difficulty you are facing. It will pass and what seems difficult now will soon become second nature. Feeling overwhelmed at times is normal. Reaching out for support is the best way to get through, because you are not alone. Faith and prayer are powerful tools for getting over the humps. Not everyone has a family or friends they can count on. Learn to recognize that your kidney disease can be just as hard on those closest to you as it is on you. It's not your fault. It's not punishment. You have a right to get angry at your disease. Everything about kidney disease, including treatment, is scary, but it appears worse than the experience proves to be. The diet doesn't mean no or never to most foods. Learn from your nutritionist what your daily limits are for potassium, sodium, phosphates and fluids. The diet is like budgeting and you can learn to work within your budget. Eat protein first and take your binders. In the beginning the things we have to learn are overwhelming for everybody. No one is expected to do everything right as soon as they hear the information. It takes time to learn and practice.Finally, YOU are ultimately in charge of your treatment.

Tips for Home HD Success

• “The best advice I got from this group when I first started was no matter what happens to stick with it for at least 6 months. I would have gone back to center within the first 2 weeks.”

• “Do as much as you can yourself. It is empowering and less burdensome on your care partner. Do it together initially, and then gradually build up the steps you do on your own; It is not so overwhelming then. Cannulate yourself if you are physically able to. Don't get hung up on doing a treatment if you are having problems. Think incident pit! Just stop and do it the next day. Do not forget clamps. Keep your alarm log handy.”

• “Stick precisely to your routine and sequence of setting up. Confidence and efficiency will grow. Guard against over-confidence and the temptation to cut corners. (I tried and screwed up.) I do NHHD.

• I still say out loud, under my breath mind you (lol!) ... Clamp, clamp, clamp, clamp.”

• “My biggest overall suggestion is strive to understand the why behind each procedure. The more you understand the why, the better decisions you'll make when a problem comes up. And remember, while it's all very scary and you'll learn to handle issues, the machine has safeguards to prevent most life-threatening mistakes. You almost always have a few seconds to think through a problem. And if you're having a truly life-threatening event the stop button is your friend. Practical things I learned here or the hard way:
• • Prime the "chicken foot" on the Pureflow before the first use of a SAK. It'll save an alarm at the start.
• • Check all connections in the cartridge before inserting it.
• • If you get an unexpected high pressure reading on the arterial side, try resetting the pod before taking more drastic measures. I was taught to reset the pod for low readings but have discovered pod issues can also cause high readings.”

• “UF rates , fluid removal, dry weight and related issues like low / high BP during or after treatment are NOT taught in most training programs here in the US and it is the key to feeling your best.” (Note: Use the Home Dialysis Central Ultrafiltration Rate Calculator to see if YOU are in the green.)

• “Mistakes can happen to anyone, regardless of how long they been doing dialysis. Everyone has a bad treatment occasionally. It’s ok to stop and try again tomorrow. It’s ok to get tired. Don't be so hard on yourself.”

• “If possible, have a set time that won't interfere with the rest of your day. I usually ran in the evenings when we would normally be watching TV anyway. It made dialysis feel less intrusive in my life. Don't be so strict that you feel bad about skipping a day. That's the beauty about dialyzing at home, make it fit YOUR schedule! I was on 5 days; I averaged 2 days on, 1 day off. I was told that if necessary, I could dialyze twice in one day. (In the morning & again at night.) I did this a couple of times when something came up at the last minute that I wanted to go to. Check with your clinic!! I used a NxStage machine so I don't know about other systems. NxStage has an 800 number you can call if you just can't figure out what went wrong. They were wonderful! Saved much frustration!”

• “Learn to troubleshoot. Try to work out a problem yourself before resorting to phoning tech support. You will learn your system better, and it will increase your confidence. Call your nurse for clinical issues, and tech support for technical issues.”

• “My tech (best tech ever!) once told me, that at the end of the day, the machine, is just that... a machine. When things go haywire... machine alarms/RO alarms/power failures/water leaks... everything is secondary to your fistula/graft/CVC and overall well being. I used to get so caught up in how to make the machine quiet that I would lose sight of what 'really' matters in the moment.”

• “Keep a pair of pliers by the machine in case the lines don't unscrew from needles for any reason. I use a Nikkiso machine with Baxter supplies, and sometimes the saline line and the A line get stuck. I dialyze alone, and without the pliers, it would mean disconnecting with no washback and losing a lot of blood. Pliers = a godsend!”

• “Be patient and learn to laugh off the mistakes rather than stress over them. Mistakes WILL happen no matter how long you've been doing it. Just think of the stories you will have for other newbies!”

Speaking of other newbies—here is YOUR chance to help. Just leave your own tip after this post!