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What’s a health goal you set but find it challenging to implement?

Making health goals can create a roadmap for you to follow when you’re looking to make decisions about your well-being. It’s not always easy, though, to implement every goal immediately — especially when you’re met with challenges or barriers. This can be anything from health limits and demands, limiting beliefs, finances, your living situation, or even circumstances that are out of your control.

What’s a health goal you set but find it challenging to implement?

#KidneyDisease #Caregiving #Parenting #RareDisease #Transplant #PrimaryHyperoxaluriaType1 #CheckInWithMe

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Hi! I’m new here #AcousticNeuroma #Fibromyalgia #Diabetes #MDD #PTSD #Anxiety #Deaf #HardOfHearing #ChronicFatigue #chronicvertigo

Yes, I have all those issues and more. I just can’t remember all of them! LOL! 😆 I’m single sided deaf from surgery to remove my acoustic neuroma in 2009. They went through the ear and also pushed aside my brain to cut most of the little bugger out. They cut my balance nerve. The other side was supposed to pick up & stabilize me, but it’s lazy. I’m still unsteady after 14.5 years.

My most recent dx’s are chronic kidney disease stage 3a (I can’t remember if it’s a or b. It’s the least affected one. I’m working on reversing it.), C-PTSD from 19 years of raising our 2 kids from Russia (both alcohol affected by birth moms so they have permanent brain damage, delayed development, learning disabilities, ADHD, PTSD, extreme impulsive anger issues & more.) , precancerous colon polyps and diverticulosis. Yeah, fun stuff.

I decided to join this group because of the many different diagnoses I have. Plus my kids having many dx’s too. So, HI! 👋🏼

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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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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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See full photo

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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I'm new here!

Hi, my name is TPain87. I'm here because
I have been dealing with nonstop everyday migraines for the last 11 years. I am tired of going through this. Multiple doctors I've been through who I've switched to diff ones because I wasn't getting help when I asked them to please do certain tests. They continously put me on different meds. I take sumatriptan when it's BAD and I also take propranolol for my high blood pressure and to help with the migraines as well as monthly aimovig injections. I hate nobody around me will help! I've been to the er so many times over the years even once with a fever of 104 and they thought it was meningitis but they never tested me. Sent me home on an antibiotic to see if it'd help. It did for about a month. Over this 11 year period, I have gotten worse. They're more severe, I start to see things that aren't there, I have lost 40 pounds in 3 mo ths bc I don't want to eat or drink. I also have crohns disease and stage 3 kidney disease so not sure if it has anything to do with those? I am irritable, my personality has changed significantly with one second I'm happy and with a switch I am pissed off. I have excessive sleepiness, eyes were rece tly checked bc I'm having issues with light and driving is somewhat of an issue now. I have been put on a cpap machine bc of my sleeping patterns or nights I don't sleep. I'm confused and can't remember things how I use to. I'm struggling really bad. I'm 35 years old and have been dealing with this since I was 24. I am always feeling ill and always go to bed to wake up with fevers. Something IS WRONG and no neurologists seem to help. I have gone through physical therapy and it didn't help as well as chiropractor apps 2 times a week and still didn't help so .y insurance seen there was no improvement so they stopped paying for it. I can not work right now bc of it. My last job I was sent home a lot! If ANYONE knows anything, please help! I am struggling just to manage them every day just to live! 😔 If anyone might know what it could possibly be? or who is going through the same thing, I'd like to know! I feel alone. 😩

#MightyTogether #Anxiety #Depression #Migraine #Crohn 'sDisease

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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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