Our new normal

It’s Monday. The weekly countdown begins. We mark time until noon on Friday. When we reach that point, it means we have put four more home hemodialysis treatments in the books.

In a methodical and choreographed routine, we quietly work each week to keep Bob alive.

The enormity of the responsibility is overwhelming and anxiety-inducing. It requires unmatched focus and attention to detail. It relies on a large volume of knowledge that was quickly crammed into our heads. This is the stuff people study for months and test on in nursing school. It’s stuff they practice in residency training. But we learned it in a 10-week crash course.

The setup at a home: We’ve outfitted a spare room with a recliner and dialysis equipment, blankets, and other creature comforts. I’ve assembled boxes of supplies in the basement.

In the treatment room, there’s a closet and cabinet, and in an adjacent powder room, three drawers, loaded with medical supplies – saline bags, cartridges, tourniquets, syringes, saline flush, 15-gauge fistula needles, sponges, hemostats, tape, the list goes on. It might as well be a clinic. Keeping the supply closets stocked; placing orders with the dialysis provider, or the local medical supplier. That’s the inventory clerk part – I count and recount so I always know what’s on hand and we never run low.

Make the dialysate twice a week. It’s what the machine uses to gently bathe toxins out of Bob’s blood. The nurses call it soap. Once the dialysate is made, and tested, we can do treatment. Bob starts treatment days by pulling a cartridge from the supply closet – a neatly engineered palette of tubing connected to an artificial kidney through which his blood passes in a continuous loop out of and back into his body. He pops it into the blood cycler and follows the same steps.

• Hang a saline bag, tighten all the connections.

• Prime the cartridge – test the alarms.

• Snap, tap, spank the baby – the cues we learned to memorize the process.

• Connect the lines: first white then green then yellow. Sterile connect red then blue lines with Mr. Peanut.

• Draw up two saline syringes, and hang a new saline bag.

• Take your temperature, weigh in, check for swelling, and set your prescription on the machine.

It takes teamwork, safety checks, collaboration. Did you close this clamp? Did you open that clamp? The supplies needed for each treatment – two saline hanging bags, two 15-gauge fistula needles, four empty 10ml Luer-lock syringes, two pre-filled saline flush syringes, ten 2x2” gauze pads, one 4x4 gauze pad, tape, tourniquet, two sterile work surface covers, disinfectant. Sometimes betadine. Mind-boggling.

Scrub, mask, and glove. Then it’s time to cannulate or insert needles into Bob’s access. Two per treatment, one to pull blood into the machine and one to return blood back to the body. More on that, but first, let’s talk about access. The fistula in his left arm. His lifeline. The gold standard for hemodialysis.

Earlier this spring, a vascular surgeon mapped his veins, then scheduled surgery. The procedure was to graft an artery to a vein in his non-dominant arm. The result, over time, is a high capacity, high volume blood-carrying super highway that’s supposed to be easy to cannulate because it’s hard to miss.

It takes time to mature this “baby” fistula. The nurses started Bob’s treatments slowly. They steadily worked him up to tolerating 15-gauge needles for his treatments. Then they trained me how to insert the needles. It’s a terrifying responsibility that knocked me to my knees for weeks…well, it still does.

Imagine for a second inserting a sharpened piece of steel into your loved one’s arm. Not once, but twice, four days a week. Having to make sure it ‘feels’ right by checking placement – pulling and pushing blood from the tubing into a 10ml syringe. Is the push-pull smooth? What happens if it’s not right? We can prop the needle up. Often we do. If it’s still not right, we find out quickly because a balloon of either blood or saline collects in Bob’s arm. It’s called an infiltration. It’s painful and takes time to heal by treating it with ice and heat. Oh, and the swelling and bruising! It usually cancels treatment for the day. Missed treatments don’t help Bob stay healthy. We average about one missed treatment every couple of weeks.

Choose your cannulation sites carefully, each day leaving room for the next day. Work from the bottom up. This is called laddering. The scars from a week’s series of treatments read like a pinned roadmap on Bob’s arm, a well-worn route to relieve intolerable symptoms of late end-stage kidney failure.

Check, check, check, and recheck to make sure all clamps and connections are properly set, the dialysis pump is turned on…any number of things can cause alarms and once blood gets outside the body, you’ve got to work fast to make changes before blood clots. Connect the fistula needles to the cartridge tubing. Hit the kidney key on the cycler, and we’re off, dialing up blood flow volume in increments, keeping careful watch. Once the treatment starts, monitor pressures, and manage cautions and alarms. Pay close attention for up to two solid hours. Return Bob’s blood to his body, remove needles, apply pressure, bandage, and sterilize the equipment. Perform weekly maintenance checks. Draw labs, spin the blood, ship via FedEx. Yes, I am certified to ship hazardous materials like blood samples. Yes, I have a centrifuge in the closet.

Rinse and repeat. Four days out of seven each week. Pre- and post-labs once a month.

Complications happen the longer someone is on dialysis. Repeated needle sticks cause scar tissue to form inside the fistula, also known as stenosis. We know we’re in trouble when cannulating causes bleeding, and when holding pressure for more than 10-15 minutes doesn’t stop the bleeding after removing the needles. That’s when we have to go to the access center and see a vascular surgeon for an angioplasty. Liken this procedure to the plumber roto-rooting your drain line. This happened already, much sooner than we thought.

For Bob, the procedure has gone from tolerable to painful. Lidocaine-prilocaine cream helps numb his arm to dull the sting of the needles. But during treatment, he now feels sharp jabs, likely because I’ve come too close to a nerve while cannulating. It’s out of my control but nevertheless contributes to feelings of being overwhelmed. If only I had x-ray vision.

There are other obstacles. Muscle cramps. Anemia. The longer we’re at this, at some point Bob’s kidneys are going to decide they can completely quit because something else is doing their job. That’s when we worry about fluid overload. The list goes on but we have to stay focused and not think too far ahead.

Off days are for cramming in lots of work, resting, errands, or house cleaning and laundry. Weekends are gold to us. That’s when we sleep in, go for long walks, make delicious dinners, soak up nature, relax, and maximize every minute of the day. “Sunday scaries” well up early because I can’t help but worry about starting the process all over again.

We sprint to the finish line each week. All the while in the back of our minds we wonder when the call will come to schedule surgery for Bob because a living donor has been found.

The reality is I’ve become a fully trained dialysis technician, nurse, phlebotomist, and inventory clerk. No degree. Just a certificate that says I am qualified. An entirely new, complicated set of skills I never imagined I’d need to know. LIFE-SAVING SKILLS.

This is my reality, our reality. Our new normal. We do this to save Bob’s life.