The story of one patient and dialysis

[okarol]

Joan Little Thu Aug 02 2012
The story of one patient and dialysis

Home treatment is good for some — and a nightmare for others

Kidney disease is life altering.

My late husband was diagnosed with diabetes in his early 60s, which led to kidney disease, and ultimately, dialysis.

For some, a transplant is an option, but dialysis is the common treatment — not a cure, but a life-sustaining therapy. There are two types — hemo dialysis and peritoneal dialysis (PD).

Hemo is done in a specialized facility with very highly trained staff. St. Joseph’s Healthcare (Hamilton and Stoney Creek), the new Burlington dialysis centre at Wellness House, and Oakville hospital are options for Burlington patients.

Hemo dialysis involves cleaning a patient’s blood in a machine, and returning the cleaned blood. It requires either a fistula or a central venous catheter (just below the collarbone), both of which require surgery to insert. Because my spouse’s disease escalated suddenly, he needed the catheter, installed in early 2008.

Hemo on Tuesdays and Fridays in Stoney Creek for three hours left him very tired. St Joe’s arranged for DARTS to pick him up at the Jo Brant hospital around 5 o’clock, and return him near 11. Wonderful DARTS drivers would call to tell me what time to meet him.

OHIP is a godsend for kidney patients — everything’s covered. Dialysis is very costly, and would bankrupt all but the very wealthy. But it is expensive, and doctors suggest peritoneal dialysis where practical.

PD is done at home. There are two types: manual and machine (a cycler). My husband had a peritoneal catheter inserted, and we had 18 hours of training on the manual system. It’s simple, and does not require the huge amounts of supplies that a cycler does. It involves feeding a bag of a dextrose solution by gravity (from an IV pole or other holder) into the body several times a day — in his case, four. A treatment takes about half an hour. Because of short-term memory loss, he made errors that could result in infection, so we stopped the training.

Our nephrologist then recommended the cycler, and my husband started it in January 2009. In his case, it was the wrong call. I should have twigged that, with his confusion, he was a poor candidate, but lacking knowledge, we agreed.

The machine cycled three bags of solution per night. He was weighed, his blood pressure and temperature taken, a decision was made on what strength of solution was required, and he was hooked up for five two-hour cycles.

A big issue for cycler patients is that the bowel must be empty. The peritoneum fills with the fluid, which dwells there, and when drained, removes toxins. If there isn’t room in the body cavity for the dialyte to fill and drain properly, the cycler beeps loudly and persistently.

His PD required nurses five evenings a week to hook him up, early mornings to unhook him, and early afternoon to drain the solution still in his system. They also had to lay one-use plastic drain tubes along baseboards from the machine to the bathtub, and attach a patient line (tube) to him to allow him to reach the bathroom.

I marvelled at how great it was when it worked. When we slept well, it was a luxury not having to go out in bad weather to a dialysis clinic. But those were exceptional nights. The machine beeped most nights, often at two-hour intervals. It had a display that identified the cause, and there was a 24-hour phone number for help. We only used the 1-800 number once, but often at two or three in the morning, were checking the troubleshooting section in instruction manuals.

Other huge negatives were storing heavy supplies, usually 30 to 40 cartons (up to 10 kilograms each) of solution, tubing and other supplies along the wall in an upstairs bedroom, carrying the night’s bags downstairs, and staying home for bi-weekly deliveries. It was so heavy, baseboard separated from the wall in our older home.

Nurses didn’t carry bags down to the main-floor bedroom, and I developed a hernia doing it (requiring surgery), and from lifting the heavy garbage bags of used supplies. Halton extended our garbage bag limit to nine every second week.

Dialysis patients need monitoring, so doctors’ appointments were frequent.

Predictably the strain took its toll. By July, I could no longer care for him, and he was admitted to a nursing home shortly after, very unhappy. No one had told us nursing homes wouldn’t accept PD patients, which meant reverting to hemo, and two more surgeries to reinstall a venous catheter and remove the peritoneal one. (He then had to be transported to Stoney Creek three times weekly for four-hour hemo treatments).

I have nothing but praise for the home dialysis program and for the dedicated nurses who carry it out, but the patient has to be right for it. I doubt elderly patients with early dementia are.

St. Joe’s offers excellent sessions on both hemo and PD, but so little is written on home PD that perhaps others might benefit from our travails.

Joan Little lives in Burlington.

http://www.thespec.com/opinion/columns/article/772148--the-story-of-one-patient-and-dialysis