Claudia Muhebi, 51, has lived with autosomal dominant polycystic kidney disease (ADPKD) for more than 30 years. She’s in stage 4 kidney disease, and her doctor recently started talking to her about getting ready for dialysis.
“My mom underwent dialysis for 5 years while she was on the waiting list for a kidney transplant,” says Mohebi. “It wasn’t a good experience — I often left her feeling nauseous and tired. But when you get to that point, you don’t have a choice.”
For many people, this is a temporary option until a kidney transplant becomes available, “but they may have to do dialysis while they’re on the waiting list, which is usually about 5 years,” says Jaime Uribari, director of the Mount Sinai Dialysis Program. hospital kidneys.
How do I prepare for that?
Most nephrologists recommend starting dialysis when 85%-90% of your kidney function is gone and/or your glomerular filtration rate (GFR) drops below 15. They recommend dialysis and are encouraged to get on a kidney transplant list,” says Oribari. Since ADPKD Progressing relatively slowly, it gives patients some time to prepare, he notes.
When your glomerular filtration rate drops to around 20, Uribari recommends talking to your doctor about setting up the fistula. In this surgery, the artery is attached to a nearby vein under the skin to create a larger blood vessel. This creates an access point for the dialysis machine. “We like to do this two to three months before the first dialysis session, as 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 do not have a vein large enough for a fistula, your doctor can create an artificial vein and surgically install it. If you need to start dialysis right away, your doctor can 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 the catheter four times over a 5-month period because it wasn’t working properly,” says Dawn Clayton Lewis, a 37-year-old fraud investigator in Fort Worth, Texas, who started dialysis in March after she developed kidney failure.
What should I expect?
Most people on dialysis end up having on-site dialysis at a hospital or dialysis center, Uribari says. This happens when a machine removes blood from your body, filters it through a dialysis machine (artificial kidney), and returns the clean blood to your body. It takes 3 to 5 hours and is done three times a week. “I generally spend the first hour on my phone, and then sleep the rest of the time because I’m so exhausted,” says Clayton Lewis.
You may have side effects during or after dialysis. These include:
- Low blood pressure
- dizziness or fainting
- itchy skin
- muscle cramps
- restless leg syndrome
Since dialysis at the center takes a lot of time, you may also need to talk to your employer about changing your working hours. It’s up to Clayton Lewis. “3 days a week I do dialysis, I go from 6 am to 10 am, and then I am in my office from 10:30 am to 7 pm,” she says. “Some days, especially in the beginning when I was on dialysis, I couldn’t stay up very long, so I would lie down to take a nap in the middle of the afternoon for about an hour.”
Another option is home dialysis. Since it’s easier to fit treatments into your daily schedule, you’re more likely to do so, Uribari says. There is some evidence that home dialysis allows you to take less medication to control kidney disease complications such as high blood pressure or anemia, has fewer side effects, and improves your overall quality of life. But you will need training so you can do this safely at home. There are three main types:
- Conventional home dialysis: You do this three times a week for 3 to 4 hours at a time.
- Daily home dialysis is short: This is done five to seven times a week for about two hours each session. Because you do this more frequently, less fluid needs to be removed. This reduces side effects.
- Home nighttime dialysis: These treatments are done while you sleep most nights of the week for 6 to 8 hours, which can lead to more waste being removed.
In very rare cases, you may develop complications from dialysis, Uribari says. These infections include an arteriovenous fistula or graft, or scar tissue blockage. The dialysis needle can also fall out of your arm, but an alarm will go off to alert you or the medical staff of the problem.
What changes will I need to make?
Besides making a time commitment to do dialysis, whether it’s at a center or at home, you’ll need to make other changes to your lifestyle. These include:
Reduce your salt intake. This may help control your blood pressure. It may also prevent you from retaining fluids between dialysis sessions.
Eat more protein. People on dialysis need about 8-10 ounces of protein-rich foods such as meat, fish, poultry, and eggs each day. While nuts, seeds, and legumes also contain protein, you’ll need to limit them because they’re high in potassium and phosphorus.
Avoid whole grain foods. Whole wheat bread, bran cereal, and brown rice are high in phosphorus, which in large amounts is bad for the kidneys.
Be careful with dairy products. Foods such as milk, yogurt and cheese are rich in phosphorus. Cut back on it, or if you do eat it, take a phosphate binder with that meal.
Focus on specific 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 not have to go on dialysis for at least another year, Mohibi plans for the future. “I’ve seen my mother go through it for so many years, and I know what to expect,” she says. “Although it has been hard on her body, I want to stay positive and look at it as just another phase in my life until I can have a kidney transplant.”