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________ would help me feel more calm about my health.

When you live with primary hyperoxaluria type 1 (PH1), it can be challenging to manage the demands, needs, and treatment that come with it. Reaching a state of calm and balance may mean taking intentional steps or seeking help if necessary (or it may even look like getting answers!). What would help you feel more calm about your health?

#KidneyDisease #Kidney #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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What do you feel is the hardest part about living with PH1?

Living with PH1 can be really challenging, and oftentimes looks different for everyone. What do you feel is the hardest part about living with PH1? What do you wish others better understood?

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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How has PH1 affected your dating and love life?

From employment to body image, dating to maintaining personal relationships, we know PH1 symptoms can affect life in many different ways (both good and bad).

Whether it’s stigma, lack of public understanding, or the impact your condition has on your confidence and self-image, it can be challenging to navigate relationships of all kinds.

How has PH1 affected your ability to date and explore romantic relationships, if those are of interest to you? Let’s share and help one another in the comments below. 💌

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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What do you find most challenging about understanding lab tests and results?

There are many lab tests your doctor can perform to diagnose and track the progression of your primary hyperoxaluria type 1 (PH1). But sometimes it can be challenging (or feel impossible!) to understand lab test results even when your doctor walks through them with you, leaving you feeling confused or frustrated.

What do you find most challenging? Share your experiences or tips with us in the comments below. ⬇️

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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What information or input is important to you when starting a new PH1 treatment?

If your doctor prescribes a new-to-you primary hyperoxaluria type 1 (PH1) treatment, what’s important for you to know before you start taking it?

Maybe you receive the majority of your medical information from your doctor, and defer to their recommendations about possible treatment options. Maybe you would prefer to talk to your loved ones about your options, or perhaps you look to the experiences of other patients who have already tried the medication you are considering.

Share what’s important to you in the comments below. There’s no wrong answer!

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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What’s on your health to-do list this week?

Living with a kidney disease like primary hyperoxaluria type 1 (PH1) means that taking care of your health can often feel like a full-time job. Maybe you are making phone calls to your medical team, paying bills, requesting medical records, scheduling an appointment, or picking up medication at the pharmacy.

What do you need to get done this week?

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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Transplant Evaluation

I’m scheduled for an initial evaluation for a liver transplant (due to cirrhosis from autoimmune hepatitis) in a couple of weeks. What should I expect from this set of appointments? How can I prepare? What questions should I ask?

#AutoimmuneHepatitis #LiverTransplant #LiverDisease #OrganTransplant

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What has your experience with a kidney or liver transplant been like?

Like any surgery, we know there are many benefits and risks to consider when you are eligible for an organ transplant, including the process of finding a donor, which can be long and challenging.

Have you or your loved one received (or considered) a kidney or liver transplant as an option for treating kidney failure or primary hyperoxaluria type 1 (PH1)? If so, share your experiences with the process, including any hopes and worries, in the comments below. ⬇️

#RareDisease #ChronicIllness #KidneyDisease #KidneyTransplant #KidneyCancer #KidneyStones #PH1 #LiverTransplant #OrganTransplant

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What do you wish others knew about your rare disease?

One of the everyday challenges of living with a rare disease like primary hyperoxaluria type 1 (PH1) is explaining your condition to others (whether your doctor, loved ones, or strangers).

What is something you wish others knew about your rare disease? What is something you are just tired of explaining? Share in the comments below. ⬇️

#RareDisease #ChronicIllness #Rare
#KidneyDisease #KidneyHealth #KidneyStones #kidneyawareness #KidneyTransplant #LiverTransplant #Selfcare #Caregiving #PH1

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What does self care look like to you?

If you have a kidney condition, you know how challenging it can be to balance managing your condition with your other responsibilities (such as work, school, and household chores). It can even feel impossible at times, but it’s important to find time to take care of yourself.

Whether relieving stress through meditation or yoga, distracting yourself with hobbies or activities you enjoy, spending quality time with loved ones, or connecting with a mental health professional, share your self-care routine below. ⬇️

#Selfcare #RareDisease #ChronicIllness #Caregiving #KidneyDisease #KidneyHealth #kidneyawareness #KidneyStones #Dialysis #KidneyTransplant #LiverTransplant #PH1

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