When managing chronic illness, such as PKD, it is important to have a team of people to help you manage your health needs. In this session, we will discuss building great relationships with your health care team. To do this, you need to understand the health providers that make up your team from primary care to specialists, how best to contact them, and most important — who to call for what! Learn how to prepare for a new appointment, the questions that you need to take with you and how to leave your appointment with the answers you need.

Learning objectives

• List health professionals that need to be included as part of health care team.
• Assess specific health care needs and determine which health care team member should be consulted.

Patients spend a lot of time preparing for a kidney transplant. Getting through the evaluation process can be daunting but once you have done that, what should you expect right after transplant? During this session, we will provide an overview of the information you will receive before you leave the hospital including how often you will need labs and why labs are important to keeping your new kidney healthy, best tips for managing new medications, how often you will need to return to the transplant center for clinic visits and who do you call at the transplant center when you have questions.

Learning objectives

• Articulate the importance of post kidney transplant care.
• Describe basic information about what to expect after a kidney transplant.

Managing the emotional impact chronic disease has on your quality of life sometimes takes a back seat to managing all of the other important aspects of day-to-day life; prioritizing family, work responsibilities, appointments, etc. But, that does not mean that the emotional toll of PKD is any less important and it is vital to your quality of life. In this session, we will discuss how body image, chronic pain and fatigue, depression and much more can affect PKD patients and suggest coping strategies to ensure the best quality of life.

Learning objectives

• Recognize the emotional aspects of living with PKD that affect quality of life.
• List coping strategies that can help improve quality of life.

When kidney function declines, dialysis becomes a conversation that you will need to have with your doctor. There are different types of dialysis and many decisions to make when you are considering your options. During this session, you will learn how dialysis works, dialysis options and how to work with your doctor to make the best decisions about dialysis for you.

Learning objectives

• Describe how dialysis works.
• List the types of dialysis available.
• Prepare for conversations with health care team based on information learned.

Making decisions about your child’s care can be a challenge for parents and family members. In this session, we will discuss best practices for clinical care of children with ADPKD and ARPKD / CHF.

Learning objectives

• List symptoms associated with living with PKD in children.
• Define CHF and understand how it impacts children with ARPKD.

Remember the rule: put your own oxygen mask on before you assist others? Caring for yourself is one of the most important things a caregiver can do and it is very often forgotten. In this session, we will discuss the importance of self care and the consequences to your health when self-care isn’t prioritized. We will also discuss practical suggestions for managing care of a loved one with PKD and still taking the time to care for yourself.

Learning objectives

• Understand the health risks associated with not taking care of themselves as a caregiver.
• List ideas as to how they might start prioritizing self care.

If you have PKD and are considering a family, you may have questions or concerns. Join us to discuss family planning concerns, risk factors associated with pregnancy for PKD patients and learn about preimplantation genetic diagnosis (PGD).

Learning objectives

• Identify concerns for PKD patients and family planning.
• Understand what PGD is and how it is a family planning option.

PKD is not just a disease of the kidneys. In this session, learn what your need to know about non-kidney related complications, when you should consult your nephrologist and what questions you should be asking at your next appointment. In this session, we will discuss aneurysms, PLD and liver issues, gastrointestinal complications and cardiovascular complications.

Learning objectives

• Identify PKD as a systemic disease and list organs other than kidneys that can be affected.
• Evaluate their own symptoms and determine when to talk with their doctor.

A preemptive kidney transplant is a transplant performed before the need for dialysis that offers and several benefits for the recipient, including better quality of life. Do you have unanswered questions about the best path to a transplant? In this session, our panel will discuss best practices for securing a preemptive transplant, while answering your questions about transplant referrals, the evaluation process, donor testing and surgical recovery.

Learning objectives

• Describe the process to preemptive transplant.
• Determine ideal path toward living donor transplant.

Family time, homework, activities…Oh My! When do you have time to work in managing health care for your child with PKD? Let’s talk about how to be the best advocate you can be for your child and also, how to get the help you need as a parent and a caregiver.

Learning objectives

• Develop skills necessary for advocating for child(ren) with PKD.
• Identify a support system.

How do you recognize when day to day stress becomes a health issue when you are caring for someone with PKD? Many caregivers experience exhaustion and caregiving can also be emotionally, mentally and sometimes, financially draining as well. How do you recognize when you are experiencing depression, anxiety or even PTSD and when should you seek professional help. This session will be repeated specifically for PKD parents.

Learning objectives

• Identify PTSD as a real issue that could impact quality of life.
• Describe how to recognize PTSD and how to get help.

Sharing your PKD diagnosis with others can be difficult. PKD can affect multiple generations in the same family and with each diagnosis, the question of how to talk to others about PKD comes up. In this session, we will discuss how to talk to family members, children and friends about PKD and we will hear from others about how they faced difficult conversations.  

Learning objectives

• Remember practical tips about sharing how PKD affects your life when talking with others.
• Evaluate when and how to share a diagnosis with different people in life—close famiy and friends, children, acquaintances.

More than 80% of PKD patients develop cysts on their liver. While it is common in PKD patients, only about 1 in 10 people with PLD experience problems associated with having liver cysts. In this session, the focus will be on complications associated with PLD and clinical management of PLD. 

Learning objectives

• Describe symptoms associated with PLD.
• Relate the information learned in this session with specific health care concerns.

It is important to educate yourself and your family about transplantation so that when the time comes, you are prepared – timing is everything! In this session, we will explain why timing is so important and provide a basic overview of the transplantation process from evaluation through surgery and recovery.  

Learning objectives

• Describe the transplant process.
• Recognize when to begin the transplant conversation with health care team.

Do you feel stressed when planning meals for your family? Let’s review dietary needs of children with kidney disease. Once we understand the basics, let’s get some practical advice for planning healthy meals and snacks for your busy family and hear tried and true trips from parents that understand, this struggle is real.  

Learning objectives

• Recall basic dietary needs for children with PKD.
• List tips that will help you meet the dietary needs of your child.

With PKD, there can be different reasons for pain and what works to alleviate pain for one patient, may not work for another. In this session, we will learn causes of pain in PKD patients, the difference between chronic and acute pain, best practices for pain evaluation and pain management. We will also get an overview of interventional procedures that are available and the risks and benefits associated with these procedures.

Learning objectives

• Generalize the complicated nature of pain management for PKD patients.
• Understand best practices for managing pain associated with PKD.

After a kidney transplant, or even before, you may have lots of questions about what life looks like post transplant. Let’s take a look at 6–12 months after a kidney transplant and what your new normal may look like. Can I eat out at my favorite restaurant? Can I travel? How do I adjust my medication schedule across time zones? Do I still need to drink lots of water? When should I contact my transplant team? Let’s address some of the most asked questions!

Learning objectives

• Recall basic information necessary for keeping your kidney healthy as you adjust to a new normal.
• Recognize when you need to consult with your transplant team.

As kidney function declines, dietary needs can change. In this session, we will discuss basic nutrition needs and how these can change as kidney function declines. We will also provide practical tips to help you manage your diet when adjustments need to be made such as how to adjust your favorite recipes and how to best make decisions when you are eating out.  

Learning objectives

• Recognize the importance of keeping up with your nutrition needs as kidney function declines.
• Apply information learned in this session to planning for nutritional changes.

Since the Foundation’s establishment in 1982, we have invested almost $50 million in research projects, grants, and fellowships. Today, we’re encouraged by the significant strides the research community is making to find treatments and ultimately a cure. In this session, we will hear from three PKD researchers and learn about their latest research projects and findings.  

Learning objectives

• Recall information shared about each research project.
• Demonstrate why the research shared is important to understanding PKD.

Many PKD parents have shared their feelings about how difficult it is to begin a conversation about PKD with their children. Not only is this a difficult conversation but how do you know when is the appropriate time? In this session, we will discuss how to have a conversation with a child that has PKD, how to talk to a child about how PKD affects another family member and how to determine the appropriate information to share.

Learning objectives

Relate the information shared to the needs of the children in your family and feel confident beginning or continuing a conversation about PKD.

I have PKD. How do I know that I am receiving the best care possible? In this session, we will discuss best practices for disease management and learn about the current FDA approved treatment for ADPKD. We will discuss how often you should see your physician, what to expect during your appointments and how this might change as PKD progresses. We will also hear from a PKD patient about the importance of advocating for yourself and working closely with your physician as you manage PKD.

Learning objectives

• Recognize the most important aspects of disease management.
• Apply the information learned in this session to current disease management plan and determine questions to ask health care team.
• Articulate the importance of knowing TKV and how this measurement impacts disease management plan.

Approaching end-stage renal disease (ESRD) is a concern for PKD patients as kidney function begins to decline. Attend this session to learn the signs and symptoms associated with approaching ESRD and learn how to recognize when you should discuss these symptoms with your health care team.

Learning objectives

• List symptoms associated with approaching kidney failure.
• Evaluate disease progression and determine if it is time to discuss these symptoms with health care team.

Learning objectives

Describe risks and benefits of nephrectomy surgery.

Coping with a chronic illness can be very difficult for the child but also, for the family. From diagnosis to preparing for dialysis or transplant, families go through many challenging times as PKD progresses. This talk will focus on learning coping strategies and parenting when your child has a chronic illness, as well as how to promote positive coping skills in your children.

Learning objectives

• Relate the information shared to family’s current needs.
• List coping strategies that will benefit their family.

Pick a topic and join the conversation! This is a great way to connect with people dealing with the same challenges you are.

• I have PKD. Now what?
• Coping with PKD as a Caregiver
• Considering living donation? Hear from living kidney donors
• Living your best life on dialysis
• Living your best life post transplant
• Approaching end-stage kidney disease—You’ve got questions, we’ve got answers
• ADPKD parents
• ARPKD parents
• Advocacy