So if you’ve been following my story (and for the sake of this article I’m going to assume you have), you know that over the summer of 2019 I was diagnosed with IgA Nephropathy, a disease that while considered rare compared to some of the sexier diseases, is also the third leading cause of Chronic Kidney Disease (after Diabetes and High Blood Pressure).
Having been diagnosed with a disease I knew little about, yet knowing it can and often does have serious implications for the patient long-term, my first reaction was, well, paralysis. This was my first time being faced with a life altering – and potentially life threatening – disease. This was the sort of thing that only happens to other people, not me. I always assumed I was going to go out the same way I had lived – in a blaze of stupidity. Like falling down an exposed manhole in busy downtown Haverhill. Or being attacked by a hungry black bear (also in busy downtown Haverhill for some odd reason). Getting taken out by a disease? That’s for other people.
This is a great animation I found on Youtube that details how a kidney transplant is performed. While a lot of the jargon is over my head, it’s fascinating how they pull this off and the care involved. I never thought I’d be so fascinated watching veins get sewn together but it really is amazing how they do this.
It’s not a long video, so it’s a good seven minutes well invested.
‘Kidney Crossroads: The New Kidney Healthcare Initiative: What does this mean for you?‘, sponsored by Brigham and Women’s Hospital is coming to Somerville on Saturday March 14, 2020 beginning at 8:00 AM and running through 1:00 PM.
Credit for this article goes to the American Kidney Fund Blog where we are introduced to three state legislators from different states (and across party lines) who have one big thing in common.
All three are kidney donors.
This is good news in a couple of ways. First the obvious. A number of people got kidneys from living donors (the best kind). Second, in an age where few people have confidence in the political system, it’s a nice reminder that government is made up of people who actually do go into service with the goal of making a difference. Some stray over time and others make a real effort to move the ball downfield. These are a few examples.
On Saturday June 22, 2020 from 3:00 PM to 6:00 PM a fundraiser will be held at SweetFrog Premium Frozen Yogurt in Marshfield, Ma. This is a benefit with 10% of all proceeds going to Nephcure Kidney International! If you’re from the Cape Cod or Greater Boston area, consider making the trip down to support the cause. I’m planning on making the trip myself and really, isn’t that reason enough to be there?
Seriously, the people at Nephcure do great work, so lets support efforts like this and help grow the cause!
The official flyer for the event is below. If I get any more information on this or other local events I’ll post it here and in the forum. Planning on going? Let us know!
This is a recent talk at the University of Leicester in the UK. It is a good basic overview of how transplantation is done in general and also adds some interesting IgAN specific information at the end regarding whether or not it comes back post-transplant which is of great interest to me. It’s not too long so give it a look!
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!
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.