About chrisperrault

Coffee drinker, music listener, blogger, and a kidney disease patient.

News and Media Roundup: 12/22/2019

A look at some of what is happening in the world of kidney health:

HHS proposed rule expands reimbursement for living kidney donors – 12/20/2019

In keeping with the executive order Advancing American Kidney Health, HHS has released a proposed rule intended to reduce financial barriers to living organ donation by expanding reimbursable expenses for kidney donors...

Hopefully we’ll see the impact from this sooner than later!

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What is Nephrotic Syndrome

Nephcure Kidney International has some great material on Nephrotic Syndrome and the various diseases that lead to it. Nephrotic Syndrome is a little hard to describe but as NKI has it stated, it is an umbrella term for any number of conditions brought on by glomerular diseases, especially those that lead to protein and blood being leaked into your urine. Focal Segmentation Glomerulosclerosis(FSGS) is one such disease, with another being IgA Nephropathy. There are other diseases that will lead you down the same path, so check out the Nephcure site at https://nephcure.org/livingwithkidneydisease/understanding-glomerular-disease/ to learn more.

This is a great intro video to Nephrotic Syndrome and the real life impact it has on patients and caregivers.

Eight Year Old Boy Desperately Needs Transplant

A friend shared this on Facebook. I only know what I read in the article but his situation sounds pretty severe. I hope they are able to work around his complications and get him the transplant he needs. He’s too young to be dealt that hand.

Read the article.

Update: 12/5/2019

While Jordan is still waiting, there is some positive news to report. There have already been 1200 applications requested by people who are interested in donating him a kidney. Hopefully out of all these people there will be at least one good match and they can go forward with the procedure.

Read the article.