Claudia Morhibi, 51, has been living with autosomal dominant polycystic kidney disease (ADPKD) for more than 30 years. She has stage IV kidney disease and her doctor recently started talking to her about preparing for dialysis.
“My mother had dialysis for 5 years while she was on the waiting list for a kidney transplant,” Morhibi explains. “It wasn’t a good experience – it often left her feeling nauseous and tired. But when it gets to this point, you have no choice.
For many people, this is a temporary option until a kidney transplant becomes available, “but they may need to do dialysis while they are on a waiting list, which is usually about 5 years,” says Jaime Uribarri, MD, director of the Mount Sinai Home Dialysis Program at the hospital.
How can I prepare for it?
Most nephrologists recommend starting dialysis when 85-90% of kidney function is depleted and/or your glomerular filtration rate (GFR) drops below 15.” By the time a patient’s GFR reaches 30 talking to them about dialysis and encouraging them to get on a kidney transplant list,” Uribarri says. Since ADPKD progresses relatively slowly, it gives patients some time to prepare, notes- he.
When your GFR drops to around 20, Uribarri recommends talking to your doctor about having a fistula. 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 2-3 months before the first dialysis session because it can take several weeks for the fistula to heal and become strong enough to withstand dialysis treatments three times a week,” he explains.
If you don’t have a vein large enough for a fistula, your doctor can create an artificial vein and install it surgically. 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 over a 5-month period because it wasn’t working properly,” says Dawn Cleeton-Lewis, a 37-year-old fraud investigator in Fort Worth, Texas, who started the dialysis in March. after suffering from kidney failure.
What should I expect?
Most people who get hemodialysis end up getting in-center hemodialysis at a hospital or dialysis center, Uribarri says. This is when a machine takes blood from your body, filters it through a dialyzer (artificial kidney) and returns the cleaned blood back to your body. It lasts 3 to 5 hours and is done three times a week. “I usually spend the first hour on my phone and then sleep the rest of the time because I feel so exhausted,” Cleeton-Lewis says.
You may have side effects during or after hemodialysis. These include:
- Low blood pressure
- Dizziness or fainting
- Itchy skin
- Muscle cramps
- restless leg syndrome
Because in-center hemodialysis is time-consuming, 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’m on dialysis, I go from 6 a.m. to 10 a.m., then I’m at my desk working from 10:30 a.m. to 7 p.m.,” she says. “Some days, especially in the beginning, when I was just getting used to dialysis, I couldn’t last that long, so I would lay down for a mid-afternoon nap for about an hour. “
Another option is home hemodialysis. Since it’s easier to fit treatments into your daily schedule, you may be more likely to do so, Uribarri says. There is evidence that home hemodialysis allows you to take fewer medications to control kidney disease complications like high blood pressure or anemia, have fewer side effects, and have better quality of life in general. But you will need training to be able to do it safely at home. There are three main types:
- Conventional home hemodialysis: You do this three times a week for 3 to 4 hours at a time.
- Short daily hemodialysis at home: it is carried out five to seven times a week for approximately 2 hours at each session. Since you’re doing it more frequently, less fluid needs to be removed. This reduces side effects.
- Nocturnal home hemodialysis: These treatments are done while you sleep most nights of the week for 6-8 hours, which can result in more waste removal.
Very rarely, you may have complications from hemodialysis, Uribarri says. These include an infected AV fistula or graft, or blockage by scar tissue. The dialysis needle may also fall out of your arm, but an alarm will go off to alert you or medical personnel to the problem.
What changes should I make?
In addition to the time involved in dialysis, whether in a center or at home, you will need to make other lifestyle changes. These include:
Limit salt intake. It can help control your blood pressure. It can also prevent you from retaining fluids between dialysis sessions.
Eat more protein. People on dialysis need about 8 to 10 ounces of protein-rich foods like meat, fish, poultry, or eggs each day. Although nuts, seeds and legumes also contain protein, you will need to limit them as they are high in potassium and phosphorus.
Avoid whole grain foods. Whole wheat bread, bran cereal, and brown rice are high in phosphorus, which is bad for your kidneys in large amounts.
Be careful with dairy products. Foods like milk, yogurt and cheese are high in phosphorus. Limit them or, if you eat them, take a phosphate binder with that meal.
Focus on certain fruits and vegetables. You will 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.
Although she will hopefully not have to undergo dialysis for at least a year, Morhibi is planning ahead. “I’ve watched my mum go through this for so many years, I know what to expect,” she says. “Although it’s been hard on his body, I want to stay positive and see it as another stage in my life until I can get a kidney transplant.”