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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April is "Organ Transplant Awareness Month" - #donatelife
I was staring down death recently, having waited almost 2 full years on the organ waiting list.
I was in need of a multiple-organ transplant (Liver, Stomach, Pancreas, Small Intestine, Large Intestine). . . needless to say, I was a hard match. All organs had to come from the same person, and I needed 5 good ones - that's tough!
However, even after waiting almost 2 years for these organs withOUT even a single false alarm, October 2022 was apparently "the designated time" for my match. I was only 2 months short of that full 2 year wait - and my time was dwindling. I was looking at having to go into Hospice by the end of the year.
Well, that match came and when I woke up from surgery, I felt like a different person. Yes, I was hurting from surgery - it was more than 12 hours long and it spanned over 2 days. But I almost felt better after surgery than I did going into it. . . pushing aside the pain from surgery itself, my body felt better in surgery recovery than it did going into surgery!
I have had my setbacks and had a few times where adjustments with medications, etc. needed to be made. However, overall I feel so much better! You can get a snapshot into my experience here:
iuhealth.org/thrive/she-moved-from-texas-to-be-close-to-iu-h...
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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
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
Comment with the emoji(s) that match your experience best:
🧼 cleaning
🚿 personal hygiene
🤝 maintaining relationships
💼 employment
🏡 leaving the house
🍳 cooking
🐈 taking care of others/pets
#RareDisease #ChronicIllness #KidneyDisease #KidneyStones #KidneyHealth #Transplant #OrganTransplant #KidneyTransplant #PH1
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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