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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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Organ Transplant Awareness Month 2023

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:



She moved from Texas to be close to IU Health’s leading transplant…

When she knew she would need not one, but multiple organs transplanted, this patient moved nearly 900 miles from her home state.
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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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Which area of your life does your kidney health affect most?

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

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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