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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 symptom is the most difficult or challenging to manage?

The symptoms and severity of a kidney condition such as primary hyperoxaluria type 1 (PH1) can vary from person to person, but we want to hear about your experiences. What symptom is the most difficult or challenging to manage?

Fatigue or exhaustion Pain Loss of appetite Fever Chills

Choose from our list of symptoms or share your own in the comments below. ⬇️

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1 #PH1

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What’s the best change you’ve ever made for your kidney health?

Living with a kidney condition requires a person to make a lot of change — big ones, small ones, temporary ones, forever ones.

Some of those changes can be hard to swallow because they are ones we never thought we’d have to make (like leaving a job). But sometimes the changes can be for the better. Maybe your health made you slow down so you can spend more time with your family. Change up your diet? Focus more on your mental health? Explore a new, more flexible career path?

Share your positive changes with us in the comments below.

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1 #RareDisease #ChronicIllness #PH1

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What has surprised you most about living with a kidney condition?

For a lot of us, the timeline of our lives can be broken into two parts: who we were before we got diagnosed and who we are now.

That change also comes with a lot of challenges, but not all of them are expected. Has there been one particular aspect that’s surprised you the most (good or bad)?

Maybe you didn’t realize how tough it would be to stay hydrated or keep up with your treatment plan, or perhaps you were shown just how strong you really are.

Whatever they may be, share your surprises with us in the comments below.

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1 #PH1

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What’s been your experience with kidney stones?

Kidney stones can be very uncomfortable and painful regardless of what’s causing them, but did you know that there are many causes of kidney stones? Gender, ethnicity and genetics can all affect how likely a person is to experience kidney stones. Some health conditions, such as diabetes or high blood pressure, can also increase a person's risk. Another health condition that can cause kidney stones is primary hyperoxaluria type 1, or PH1, a genetic rare disease that mainly affects the kidneys.

If you or a loved one has ever experienced (or are currently experiencing) kidney stones, we encourage you to talk to your doctor about what might be causing them.

P.S. For more information and resources about PH1 in particular, follow our #PH1 page (or make a post of your own!), or join our PH1 Support group to connect with others who understand.

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #Kidneystone #KidneyStones #KidneyPain #KidneyProblems #kidneyawareness #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #Diabetes #HighBloodPressure #PrimaryHyperoxaluriaType1 #PH1


how to deal with my sick mother #Support #borderlinepersonal

Hi guys... I haven’t been very close to my mom since I was a child, and have shut myself off from her and sort of blocked out any negative feeling due to toxicity. She has an addiction problem, and having to try to help her for so many years with no success has been so draining for me to deal with. Just recently she has been admitted to the hospital and is now in the ICU. her liver is failing and her kidneys stopped working on their own so she’s on dialysis. she’s stable and i have been visiting her every day. It’s hard to see her in this state and i feel like i failed her as a daughter because i didn’t know things got this bad until seeing her in the condition that she’s in. I would try to make plans to see her and keep a relationship with her regardless of everything but for the past year she found reasons to bail on me and i think she was embarrassed of me seeing her sick. she’s on a breathing machine and can’t talk, but i go in for our visits (that are only one hour a day because of covid) and i sometimes feel bad for not knowing what to talk about or what to say to comfort her. it’s difficult because she can’t talk, and i bet it’s frustrating for her as well to sit there and not be able to talk back to me. i feel like i should have done more to help her, and i’m so devastated that this has happened. i’m wondering if anyone has any advice for this situation. i don’t usually reach out to support groups, i myself struggle with depression and anxiety. I was diagnosed with BPD as well and this has all been such a big weight on my shoulders to cary around. she has hep C and she left it untreated and i believe that this is the end result and i just don’t know how to feel or what to do or if she’s gonna be okay. #BPD #Support #Depression #LiverCancer #KidneyProblems #ICU