Below is a link to an episode of The New Normal (an online documentary series). This roughly five minute episode takes a look at how the emergence of Covid-19 has impacted those on dialysis. Unlike patients with some other conditions, patients in kidney failure don’t have the option to stay home and put off dialysis treatment, even in the face of a pandemic.
This informative piece does a good job showcasing the physical and emotional toll this takes not only on the patients, but also the caregivers and the risk their loved ones take on as part of the process. It’s a short episode but worth checking out:
Be on the lookout for B Positive, a new sitcom appearing on CBS. You can catch it on Thursday nights at 8:30. This show centers on a newly divorced man who is suddenly and unexpectedly diagnosed with kidney disease. He then gets an offer of a kidney donation from an unlikely source after reconnecting with an old friend.
This series is unique in that the plot focuses largely around a man’s journey with chronic kidney disease, something not well represented today in pop culture. I hope it helps shine a light on a disease that silently affects millions of people.
I just finished watching the pilot episode. Since I don’t watch a ton of sitcoms these days it’s hard for me to really give it a good assessment. That being said, as a pure comedy, it’s not exactly Seinfeld, but I do think the characters will grow on us over time. I’m already finding myself instinctively nitpicking how some of the diagnosis and treatment aspects are depicted, but I’m also realistic enough to know that a 30 minute sitcom will need to take some liberties at times with some of he technical aspects of CKD treatment. With that understanding, what I’ve seen so far is actually quite well done.
I encourage people to check it out and spread the word. Let me know what you think in the comments below!
In my previous article What I Did On My Summer Vacation I highlighted some of my experiences so far with my involvement in a clinical trial to treat IgA Nephropathy. Clinical trials will be a theme I come back to often going forward as I can’t stress enough the importance of volunteering for them if you are able. It’s the only way to get the necessary treatments into the marketplace.
I saw the following link posted on social media and thought I’d share it here. If the reports are legit, this is another drug that has serious potential to reduce proteinuria. As of this writing it is currently in phase 2. There is real momentum out there that as patients we need to stay on top of!
I’m way overdue for an update here on what I’ve been up to over the past several months. I’m happy to report that things have been, well, quiet. Good quiet. With the gradual opening of the state after the lockdown, I’ve done a good job of minimizing my exposure to others for the most part. In spite of the pandemic, I haven’t exactly been standing still.
It’s not easy to get new information regarding current research in IgA Nephropathy. So with that in mind, I wanted to give a heads up to everyone who wants to learn more about where things stand currently and where they may be headed when it comes IgAN treatment and research.
IgA Nephropathy and You is a free live webinar brought to us by Nephcure Kidney International and it will be taking place on Friday May 15, 2020 from 4:00 – 5:00 PM EDT. You can check out the full flyer below, but I just wanted to point out that this is a rare opportunity to be brought up to speed on current developments.
If you are interested in attending, please be sure to register before hand. The link is provided in the flyer. I hope you’ll be there!
Researchers and scientists are hard at work trying to figure out what makes certain diseases tick. At the time of this writing Covid-19 is the 800lb gorilla that the medical community is trying to chase down, but let’s not forget about Alzheimers, Cancer, Parkinson’s Disease, and of course Kidney Disease among so many others.
One of the avenues researchers are investigating is the science of how certain proteins fold to make up the necessary systems in the human body and how they can cause (and help cure) diseases. I won’t pretend to be an expert on folding – I know next to nothing as a matter of fact. So here’s a snippet from the folks at Folding@Home:
Folding refers to the way human protein folds in the cells that make up your body. We rely on the proteins to keep us healthy and they assemble themselves by folding. But when they misfold, there can be serious consequences to a person’s health.
Folding@Home is a project dedicated to disease research. Since this research requires a lot of computing power, the approach they use is to delegate out units of work to volunteers who run the Folding@Home utility on their computers. With this software you can download the assigned units and your computer will perform the necessary computations and send it back up to the research site where they put the pieces back together and do all the sciency stuff that is over my head. But that’s the nice part – we can be completely science illiterate and still help out.
The @Home concept isn’t a new one. There are a large amount of projects out there in other areas (though typically science related) that use shared computing resources in this manner. If you’ve heard of the classic Seti@Home project which searches for evidence of extraterrestial life, the work is similar.
Are you interested in taking part in this process and potentially being the volunteer that opens the door to a cure for a disease? I recommend checking out the Folding@Home website to learn more about who they are, how the process works and how to install the software on your computer. Speaking on my own experience, the installation to my Fedora desktop was very easy (it does require an account on their site so they can manage the work), so I expect it will be just as easy if not more so for Windows and Mac users.
If you do decide to take the jump, please consider joining the Folding@Unfiltered team which at this time consists solely of yours truly. Let me know how your experience goes!
Welcome back to those who have been following my journey and also a big welcome for those of you who are visiting this site for the first time. I hope you’ll read up on the rest of my ramblings and follow along. Between this site and our companion page on Facebook it’s good to see some new visitors giving us a look. Be sure to follow this site to stay up to date with my health journey and more importantly the thing everyone wants more of – my opinions.
While my goal is to pull together other patients who are coping with Chronic Kidney Disease in some form or another, I’d also like to reach out to you healthy people and ensure that you never have to join our ranks.
For all the advances in treatment options that may be coming down the road, do you know what still remains the best treatment for kidney disease?
If you are following the developments of the Covid-19 virus as most people are at this point, you know that a lot of information is flying towards us at a pretty fast pace right now. Things are a little confusing and very much out of the ordinary. If you are a kidney disease patient with autoimmune concerns, this is especially true.
Below is a short video that was posted on Youtube by Nephcure Kidney International with some general advice for kidney patients (a lot of this applies to everyone really) on how to avoid the virus as much as possible and what to do if you feel you may be getting sick.
If you are like a lot of people there’s a chance you’ve never heard of Nephrotic Syndrome. It’s also possible you are now reading this because you’ve only recently been diagnosed or have a loved one who been diagnosed with this condition. I know I’m still trying to sort out not just the different diseases that result in NS, but why they are such a common cause of kidney failure. There’s a lot to learn here.
This video, a webinar from 2017 hosted by Nephcure Kidney International is a great introduction to NS by Dr. Mindy Banks. It runs for just under an hour and I recommend carving out some time watch her presentation as she does a good job of covering a lot of ground not just for relative newcomers like myself, but she also answers some questions for patients and parents who have already been struggling with this condition.
Are you new to Nephrotic Syndrome? How has it impacted your life?