For the time being, my dialysis machine is working like my kidneys

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November 21, 2022
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Claudia Morhibi, 51, has been living with autosomal dominant polycystic kidney disease (ADPKD) for over 30 years. She has stage IV kidney disease and her doctor has recently started talking to her about preparing for dialysis.

“My mother was on dialysis for five years while she was on the kidney transplant waiting list,” says Morhibi. “It wasn’t a good experience – she often felt nauseous and tired. But when it comes to that, you have no choice.”

For many people, it’s a temporary option until a kidney transplant is available, “but they may need to have dialysis while on a waiting list that’s usually around 5 years,” says Jaime Uribarri, MD, director of the Mount Sinai Home Dialysis Program in the hospital.

How do I prepare for this?

Most kidney specialists recommend starting dialysis when 85-90% of kidney function has been lost and/or your glomerular filtration rate (GFR) falls below 15 on dialysis and encourage you to be on a kidney transplant list,” says Uribarri. Because ADPKD progresses relatively slowly, it gives patients some time to prepare, he notes.

If your GFR drops to around 20, Uribarri recommends that you talk to your doctor about having a fistula placed. In this surgery, an artery is connected to a nearby vein under your skin to form a larger blood vessel. This creates an access point for the dialysis machine. “We like to do this 2 to 3 months before the first dialysis session, as it can take several weeks for the fistula to heal and become robust enough to withstand three times a week dialysis treatments,” he explains.

If you don’t have a vein large enough for a fistula, your doctor can create and surgically install an artificial vein. If you need to start dialysis right away, your doctor may insert a dialysis catheter into your neck or chest as a short-term solution. But if possible, you want to avoid this method. “I had to change my catheter four times in five months because it wasn’t working properly,” said Dawn Cleeton-Lewis, a 37-year-old fraud investigator in Fort Worth, TX, who started dialysis in March after suffering kidney failure.

What can I expect?

Most people who undergo hemodialysis end up having in-center hemodialysis at a hospital or dialysis center, Uribarri says. A machine takes blood from your body, filters it through a dialyzer (artificial kidney) and returns the cleaned blood to your body. It lasts between 3 and 5 hours and is carried out three times a week. “I usually spend the first hour on the phone, then I sleep the rest of the time because I’m so exhausted,” says Cleeton-Lewis.

Side effects may occur during or after hemodialysis. These include:

  • Low blood pressure
  • nausea
  • dizziness or fainting
  • headache
  • itchy skin
  • muscle cramps
  • Restless Leg Syndrome

Since hemodialysis takes a long time at the center, you may also need to talk to your employer about changing your working hours. Cleeton-Lewis made it a science. “The 3 days a week that I do dialysis, I walk from 6:00 a.m. to 10:00 a.m., then I work at my desk from 10:30 a.m. to 7:00 p.m.,” she says. “Some days, especially in the beginning when I was just getting used to dialysis, I couldn’t take it that long, so in the afternoon I would lie down and take a nap for about an hour.”

Another option is home hemodialysis. Because it’s easier to fit treatments into your daily routine, you’re more likely to do so, Uribarri says. There is evidence that home hemodialysis allows you to take fewer medications to control complications of kidney disease, such as high blood pressure or anemia, have fewer side effects, and have a better overall quality of life. However, you need training so that you can safely do this at home. There are three main types:

  • Conventional home hemodialysis: You perform this three times a week for 3 to 4 hours each time.
  • Brief daily hemodialysis at home: This is done five to seven times a week for about 2 hours per session. Because you do it more often, there is less fluid to remove. This reduces side effects.
  • Nocturnal home hemodialysis: These treatments are performed while you sleep 6 to 8 hours most nights of the week, which can result in greater waste elimination.

Very rarely, complications can occur with hemodialysis, says Uribarri. These include an infected AV fistula or graft, or a blockage caused by scar tissue. The dialysis needle can also fall out of your arm, but an alarm will sound to alert you or the medical staff to the problem.

What changes do I need to make?

Aside from the time it takes to have dialysis, whether at a center or at home, you will need to make other lifestyle changes. These include:

Limit salt intake. This can help control your blood pressure. It can also discourage you from retaining fluids between dialysis sessions.

Eat more protein. Dialysis patients need about 8-10 ounces of protein-rich foods such as meat, fish, poultry, or eggs daily. While nuts, seeds, and legumes also contain protein, you’ll need to limit them because they’re high in potassium and phosphorus.

Avoid whole grains. Whole wheat bread, bran cereal, and brown rice are high in phosphorus, which is bad for your kidneys in high amounts.

Be careful with dairy products. Foods like milk, yogurt, and cheese are high in phosphorus. Limit them, or if you do eat them, take a phosphate binder with that meal.

Focus on specific fruits and vegetables. You also need to limit potassium if you have advanced kidney disease. Apples, berries, cherries, grapes, cruciferous vegetables, carrots, and green beans are all good choices.

Though hopefully she won’t need dialysis for at least another year, Morhibi is planning ahead. “I’ve seen my mother go through so many years that I know what to expect,” she says. “Even though it’s been tough on her body, I want to stay positive and just look at it as another stage in my life until I’m able to have a kidney transplant.”

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