So a couple months after my diagnosis after nearly exhausting my web searches for kidney disease, I finally remembered to branch out and being something of an avid reader decided to track down some Kidney Disease themed books. To my surprise and disappointment, there isn’t a whole lot out there.
The Kidney Projectreleased a brief update on their Facebook page on March 10 regarding the push toward the clinical trials. In have had some discussions with the FDA already and they expect to have two or three more over the coming months so that they can (hopefully) submit the full application package over the summer.
Based on the tone of the update they sound cautiously optimistic that this is going to move forward, but the reality is it will likely continue to be a slow process. It’s just how it works when you try to bring this sort of product to market. There are a ton of safety requirements that have to be met before they can even think of starting clinical trials so it’s understandable why they have to take a very deliberate pace.
You can read the official update by following this linkto their Facebook page.
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.
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!
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.
In my previous article I left you on a bit of a cliffhanger. While I told you about my diagnosis of Chronic Kidney Disease, I didn’t tell you how I got it. In this article I’ll discuss what my suspected diagnosis was and what we ultimately found out based on my biopsy results. Some questions got answered, only to be followed by more questions.
I walked into my physician’s office for my six month checkup not really expecting it to be any different than it had been for the past few years. Lose weight. Take your cholesterol meds. Stay on your blood pressure medication. I expected the instructions to be the same. Outside of my weight issue and the fact that my blood pressure – which I never had any problems with before – had suddenly shot up before the last visit, I was actually in pretty good health. I was beginning to lose weight, albeit rather slowly. I didn’t take drugs and I drank moderately at most. What could go wrong?