KidneyStones

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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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A year since my last surgery

It’s coming up on a year since my last surgery for my chronic kidney stones. Thanks to a medication they seem to be under control. I used to get multiple stones a month and it was sort of ruining my life. If they were too big I’d have to have surgery and the recovery time was at minimum 3 weeks with stents. I couldn’t really keep a corporate job and it was hard with any job. Hard on my body and my mental health. Having doctors who believed me made a huge difference. So cheers to not visiting the ER every month!
#MentalHealth #KidneyStones #ChronicIllness

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Share an important, informative, or memorable part of your PH1 journey.

Each of our health journeys are multifaceted, complex, and unique — but that doesn’t mean we’re alone in what we go through. Those shared experiences are what make us Mighty! 💪

Today, share a part of your PH1 journey that has stuck with you and made a lasting impact — no matter if it’s a positive or negative mark.

#KidneyDisease #KidneyTransplant #PH1 #PrimaryHyperoxaluriaType1 #ChronicIllness #RareDisease #Caregiving #KidneyStones #LiverDisease

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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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What was the highlight of your week so far?

We made it through another week, hooray! Reflecting on the last few days, what was a bright spot for you? (No answer is too small, by the way, the sun coming out and providing literal brightness totally counts!)

My personal highlight - went out to dinner with one of my childhood best friends who is back in town for the week!

Share your super moment from the week below! 👇

#RareDisease #KidneyDisease #KidneyStones #PrimaryHyperoxaluriaType1 #DistractMe

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What’s your favorite movie series?

Hi there! My name is Vy. I’m your new group leader for PH1 Support and a member of The Mighty’s staff. I’m here to share information and resources related to primary hyperoxaluria type 1 (PH1), as well as ask questions about your experiences and support you through your health journey.

I’m so happy to be here! Feel free to say hi in the comments below and tell me what your favorite movie series is. Mine is the Harry Potter series!

#RareDisease #KidneyDisease #KidneyStones #PrimaryHyperoxaluriaType1 #DistractMe

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