Living with primary hyperoxaluria type 1 (PH1)

In PH1, commitment matters

Although your liver is constantly producing oxalate in large amounts, consistent management can make a difference in PH1. With personalized management, those living with PH1 can find ways to stay active and engaged with the people and activities that matter to them.

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Fitting management into your daily life

It can be challenging to manage PH1—from multiple medications, to a substantial amount of water consumption, to frequent dialysis sessions. Although managing PH1 can be demanding, it’s important to stay motivated to slow the damage to your kidneys by adhering to the management plan you developed with your care team.

Pay special attention during situations that may cause you to become dehydrated: this includes instances such as diarrhea, vomiting, fever, intensive physical activity, and being in a hot environment.

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Tips to help stay hydrated

Hyperhydration (drinking lots of water) is an important part of management. Your care team and those who are part of your everyday life can support you to help make sure you drink all the water you need.

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How do you stay hydrated?

Looking for new ideas?

Looking for new ideas?

  • Remember to drink as much water as you need to. Consider it an important part of your management routine
  • Make sure you always have plenty of water available
  • Drink even when you’re not feeling thirsty and at regular intervals throughout the day
  • Make sure you have a plan for going to the bathroom frequently
  • Minimize and address disruptions or interferences with your work, school, or activities

Wishing to go the extra mile?

Wishing to go the extra mile?

  • Set alarms on your phone to remind yourself to drink water
  • Bring water with you when going to a new place
  • Use an app to track your water intake
  • Keep water bottles filled up around the house, in your car, and in all your bags
  • Set deadlines for yourself to drink a certain amount by a particular time

Getting creative with hydration?

Getting creative with hydration?

  • Eat foods with high water content, especially fruits and vegetables
  • Though water is the preferred way to stay hydrated, you may find it helpful to include other fluids like milk and orange juice. Be sure to ask your care team about these and any other beverages you consume regularly to help you reach your hydration goals
  • Limit the number of sodas and sports drinks you consume
  • You can also talk to your healthcare provider about flavor additives, such as powders

No matter how you prefer to stay hydrated, be certain to consult with your care team to figure out what is best for you.

Strictly avoiding foods that are high in oxalate is typically not necessary, although you should always talk to your care team, as they may have some specific guidance.

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Your emotional health is important, too

Being unable to recognize when you’re experiencing symptoms of kidney disease can make you feel as if you are not in control. It’s been shown that in people with chronic kidney disease (CKD) or ESRD (potential consequences of PH1), the outlook on their disease can influence symptoms of anxiety and depression that they may experience.  If you are feeling overwhelmed, consider speaking to a mental health professional.

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There are other things you can try if you're feeling stressed

  • Practicing relaxation techniques, such as meditation, relaxation, or breathing exercises
  • Getting regular exercise
  • Making time for hobbies
  • Journaling
  • Staying connected with friends
  • Setting goals and priorities

Be the author of your own story

No one knows you, or your unique experiences with PH1, better than you do. There are multiple ways you can consider sharing your journey with PH1, like keeping a journal or telling your story to others.

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PH1 Perspectives: Facing an Invisible Disease

Video About Challenges of PH1 Being an "Invisible" Disease
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John C.

Diagnosed with PH1, transplant recipient

There's more support for you to lean on

See the resources that can help make living with PH1 more manageable.

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