A Guide to Who Can Help You Manage ADPKD (and What to Ask)

Each of the healthcare professionals that you might work with have their own specialties. No one person knows it all. It can be beneficial to have different areas of expertise and experiences as part of your care team.

Ideally, everyone you work with will have familiarity or experience with ADPKD, but that may not be the case.

With multiple professionals, it’s important that everyone understands the care plan. Getting copies of notes or asking that they be sent to other healthcare professionals can help. It may also be helpful for different people to be copied on your blood and urine test results.

You’ll want to feel comfortable and confident with the care you’re getting from your team. The following are a few healthcare professionals you may want to work with.

Your primary care physician is a general practitioner. This means they deal with a variety of health concerns, not just ADPKD.

You’ll likely have the most contact with this healthcare professional, who may be a doctor or nurse practitioner. Your primary care physician may be your doctor for many years, through many stages of life. It’s important that this is a good relationship because you could be with them for a long time.

They can support you with your overall health concerns. Many people have an annual health exam with their primary care physician. This is often the person who you contact first if you notice any changes with your health.

A primary care physician can monitor for some of the effects or complications of ADPKD. They may be able to support you in some parts of ADPKD management. For other things, they’ll refer you to a specialist.

A nephrologist is a doctor who specializes in kidney health. You may have regular contact with this doctor, too. It’s important that your nephrologist has experience working with people with ADPKD. You’ll want to feel like you’re getting the best care and that your needs are met.

This person may be the one who orders imaging tests and blood or urine tests to monitor your kidneys. They’ll be up to date on new treatments and medications that might be helpful for your ADPKD.

Pharmacists are experts on medications and supplements. It’s wise to use the same pharmacy for all your prescriptions. This way, they’ll have your medication list up to date.

Pharmacists are amazing resources, especially if you take multiple medications. They can help you avoid medication interactions, and you can ask your pharmacist questions about any side effects or how to take medications.

Make sure that your pharmacist knows about any supplements you’re taking. Sometimes they can interact with your medications, too.

Diet plays an important role in keeping your kidneys healthy. A renal dietitian specializes in nutrition for kidney health.

Your kidney function and overall health may mean you need more or less of certain nutrients. A dietitian can help you eat in a way to keep your kidneys healthy.

People with PKD are more likely to get kidney stones. There are dietary changes that can help reduce the risk for kidney stones. A renal dietitian can also help you adjust your diet to slow progression of kidney failure.

If you’re trying to be more active, you may want to consider working with an exercise specialist. A physical therapist or exercise physiologist can help you meet activity goals.

They’ll consider your pain and other health concerns when working with you. They can teach you exercises that may help with pain management. Exercise can be a great strategy to support better sleep and mental health.

Dealing with any health condition can take a toll on your emotional health. For many people, it can be helpful to get support with their mental health.

People with chronic health conditions like ADPKD often feel overwhelmed. They can experience depression, stress, and anxiety. Support from a mental health counsellor can help.

Your nephrologist or primary care physician may be able to recommend someone. You may have to meet with a few different people before you find the right fit, but that’s totally normal.

ADPKD is a genetic condition. This means that it’s your genes that determine whether you’ll develop it or not. In 95 percent of cases, ADPKD comes from a parent passing the gene to their child. Sometimes, there’s no family history.

You may decide to work with a genetic counselor if you or your partner want to have children. A genetic counselor can help with decisions around testing before or during pregnancy.

Pain is a very real part of ADPKD. There can be ongoing pain or sudden onset of pain. Chronic pain is often related to the size of the kidney. It’s mainly felt in your lower back, side, and abdomen.

As more cysts form, the kidneys get bigger and put pressure on organs and muscles around them. Your primary care physician or nephrologist may be able to support you in pain management. There may also be a specialty pain clinic you can be referred to if your pain is affecting your quality of life.

Sudden, intense pain can indicate something that needs medical attention. It may be caused by a kidney stone, urinary tract infection, or a kidney cyst that’s burst. Speak with your nephrologist, primary care doctor, or an emergency room for immediate care for this pain.

There are many things to consider when choosing a healthcare professional. First of all, it’s important that you feel comfortable with this person. You need to feel like your needs will be met.

If you have one healthcare professional who you really like, you may want to ask them for recommendations.

You may be able to arrange an initial meeting to see if the professional feels like a good fit. In this first visit, you can ask about their knowledge and experience with ADPKD.

You may also want to consider:

• office hours
• location
• accessibility
• insurance coverage
• payment options
• availability of after-hours care
• your comfort with the office space
• your comfort with the office staff

There may be a local kidney foundation office or support group. Those are also great places to get recommendations for healthcare professionals.

Many factors can influence access to and quality of care. Your status as insured or uninsured, physician beliefs or biases, resources available in your area, and other factors including race and your socioeconomic status can impact the level of care you receive.

A study from 2010 noted that Black dialysis patients are less likely than white patients to have received nephrology care before onset of end stage renal disease (ESRD) and are less likely to receive a pre-emptive kidney transplant. The study also observed that patients from zip codes where residents are primarily Black were less likely to receive early nephrology care, regardless of race.

A 2019 study also observed that ADPKD may be underdiagnosed in Black patients for various reasons, including a lack of family history and the prevalence of other conditions that may affect renal health, such as hypertension, sickle cell, or diabetes.

Organizations like the PKD Foundation are working to address some of these disparities through advocacy and education.

There are resources available for financial assistance and managing your care. Also, newer research, including clinical trials, may offer additional options to those seeking care.

It’s great to work with a variety of experts but can also get confusing at times. You’ll want to feel confident that everyone is up to date on your health and the treatment plan.

Here are some tips to keep things smooth and coordinated:

• Ask for copies of your medical records.
• Write down the questions you have for each healthcare professional.
• Keep a record of any changes in your symptoms or health.
• Update all healthcare professionals if there’s a change in your medications or supplements.
• Ask for your lab and test results to be copied to other healthcare professionals.
• Join a support group to find out how others are working with different professionals.

It’s wise to spend some time researching healthcare professionals to find the right one for you. You may want to write questions down ahead of time and take notes during the appointment. Some people find it helpful to bring someone else along.

While not all professionals may have experience with your condition, you want to find someone who’s willing to learn and work with your care needs.

Here are some questions to ask a healthcare professional:

• Do you have any knowledge of or experience with ADPKD?
• Have you treated patients with this condition?
• Are there specialists for my condition that you recommend?
• Are you able to refer me to other healthcare professionals or specialists?
• Is there someone in your office I can contact to access records or test results when needed?
• Are there release forms that I can complete to facilitate communication between you and my other healthcare professionals?
• Are there lifestyle changes you suggest?
• Are there other tests or screenings you suggest?
• Are there other resources you suggest?

Living with ADPKD means that you may have a lot of healthcare professionals involved in your care. It’s great to have the support and knowledge, but it can also get complicated.

You may work with a nephrologist, pharmacist, dietitian, and mental health counselor. You’ll also have a primary care doctor. Other specialists may be involved in your care, too.

Staying organized is important to make sure everyone knows the plan. You may want to keep copies of your own medical records. Asking for notes and test results to be sent to other professionals can help.

For your own well-being, it might be helpful to connect with a support group. There will be lots of ideas and expertise within the group that can help you get the best care.