Top Posts Tagged with #arpkd

I’m starting a thread, where I hold myself accountable for getting a workout in and my steppys.

Today’s day # 1.

It takes 21 days to make a habit, so let’s goooooo for day # 2.

Been feeling so out of control lately that I need to take back control of my fitness/eating habits. Woot woot, Day #1 is where it begins

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PKD Foundation @PKDFoundation #ARPKD is a rare genetic disorder occurring in approximately 1 in 25,000 children. Is your child recently diagnosed or are you wanting to better understand ARPKD? As a part of #NationalKidneyMonth, we are sharing our free, ARPKD patient handbook: https://pkdcure.org/patient-handbo (at Hammond, Indiana) https://www.instagram.com/p/CbDN7WpOfRl/?utm_medium=tumblr

#arpkd #nationalkidneymonth

PKD Foundation @PKDFoundation Join us tomorrow, for "ARPKD Outside the Kidneys: Aneurysms and Liver Disease" webinar. You'll learn about aneurysms & liver disease in #ARPKD patients, what Dr. Erum Hartung’s research studies are looking to learn, & how to participate. https://resources.pkdcure.org/resources/aneurysms-in-arpkd/ (at Hammond, Indiana) https://www.instagram.com/p/CaIVZh5v-a5/?utm_medium=tumblr

#arpkd

PKD Foundation@PKDFoundationApproximately one-third of children with #ARPKD who survive the newborn period will need dialysis or transplantation by age 10. #NationalDonorDay (at Hammond, Indiana) https://www.instagram.com/p/CaAZVfcu5Wp/?utm_medium=tumblr

#arpkd #nationaldonorday

A late 2 year anniversary update...

Well the good news is...I'm getting married! The other good news is that those non-healing wounds have almost healed...almost.

The not so good news...my creatinine is jumping around all over the place, hence so is my kidney function, and nobody knows why. So I'm typing this from a hospital bed, luckily only a short visit for a biopsy though, just an 8-hour in-and-out procedure. Which was still pretty scary considering what happened the last time anyone went near my kidney with a needle. Not a painful experience though, just a very odd sensation as the needle goes all the way through to your kidney.

Some decent food will surely help though...which is sadly unavailable in this particular hospital. "Radiology Cheese Sandwich" doesn't sound like the best sandwich. It tastes like hard butter in dry bread.

#kidneydisease #pkd #arpkd #polycystic kidney disease treatment #kidney transplant #transplant #biopsy #hungry #polycystickidneydisease

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PKD Foundation @PKDFoundation Happy National #NonProfitDay! The PKD Foundation provides hope, funds research, advocates for patients, and is building a community for all those impacted by #ARPKD and #ADPKD. Learn more about that here: https://youtu.be/FklPkqCpta8 (at Hammond, Indiana) https://www.instagram.com/p/CSr9M3crdF2/?utm_medium=tumblr

#nonprofitday #arpkd #adpkd

PKD Foundation @PKDFoundation Join us for the virtual 2021 PKD Regulatory Summit! Learn about our efforts to improve the treatment pipeline for #ARPKD and hear stories from ARPKD patients and families. The summit is free to attend so register today at https://c-path.org/2021-pkd-regulatory-summit-may-19-20/… (at Hammond, Indiana) https://www.instagram.com/p/COlg_s-sBE7/?igshid=69kn54udbu9i

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PKD Foundation @PKDFoundation ARPKD is a rare form of PKD occurring in 1 in 25,000 children worldwide. Learn more about #ARPKD from one of our amazing advocates at http://pkdcure.org/arpkd. Share to connect rare disease patients with resources and support #RareReach (at Hammond, Indiana) https://www.instagram.com/p/CL4otYojCxo/?igshid=dc3x8sn002gj

#arpkd #rarereach

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