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
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
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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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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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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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
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
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
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
I have had a number of seemingly unrelated symptoms but more recently a number of them got worse. I had an ultrasound and ct scan which showed a simple liver cyst (does not say what size), diverticula (not inflamed) and angiomyolipomas on left kidney (1.1 cm). My doctor says no way pain from liver or kidney blames everything on digestion. Does anyone here have ever had any experience of pain from a simple liver cyst? This seems to flare up for few days then eases off. I usually get nausea and bloating with this. Lying on my right side recently seemed to trigger it off for 2 days. It also flares up temporarily when I exercise (running or long cycles). It is located in top right abdomen under ribs and flares up to shoulder and even back sometimes. Got all clear from gall bladder.
I also get some pain in my left side/back (kidney?) that comes and goes but this is currently not bad. Along with periods of proteinuria and 'moderate kidney disease' (creatinine high, low egfr). Tired of being ignored by doctor who blames everything on stress.
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