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, our companion page on Facebook, and our online forum 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.
For this edition I just wanted to post a brief update on where I am in my treatment and some of the projects I’m involved in.
First off, I hope everyone is staying safe and healthy and I hope everyone is doing the right thing by staying home and basically staying away from each other. If you’ve ever dreamed of becoming anti-social, then this is your time to shine. I know I’m finding it to be a bit of an adjustment, but I’ve also been very fortunate so far, so I won’t complain about being holed up here in the sprawling Perrault Palace.
In terms of lab readings, my kidney function while still low has been seeing minor increases over the last several labs. When I first began seeing my (incredible) medical team at the Tufts Kidney and Blood Pressure Center in Boston, my eGFR had taken a dip very close to 20. My doctor made several adjustments to my blood pressure medications over subsequent visits that has helped to so far stabilize things. The eGFR has actually climbed one or two points over each of the last four visits bringing it back up to 28, so my fingers are crossed that this trend is maintained and that my function at the very least stays stable. In addition, while I’m still spilling blood and protein, the numbers are relatively good considering where my kidney function is.
I’ve also been keeping myself busy in terms of working on kidney health related projects:
I just recently participated in my first ever patient panel for a (currently unnamed) drug company looking to begin phase 3 of a clinical trial for a medication that could potentially treat IgA Nephropathy. I can’t get into specifics on that, but am looking forward to seeing this product and potentially many more treatments that address nephrotic syndrome getting FDA approval in the not too distant future.
Speaking of trials, I’m also going to be having a screening test in May to find out if I’m eligible to take part in a clinical trial for another medication that is in it’s third phase of trials. I’m crossing my fingers that I’m able to somehow satisfy the eligibility requirements, but realistically my numbers are just slightly out of range for both proteinuria and kidney function. But it’s close and I’ll keep hoping. If your interested in taking part, they are still accepting participants. You can learn more at https://kidneyhealthgateway.com/trials/oms721-for-patients-with-igan-boston/.
In addtion I’m also taking part in my first observational study. The Genetic Study For Kidney Patients is being conducted by Dr. Martin Pollack at the Beth Israel Deaconess Medical Center in Boston. This too is as of this writing still an open enrollment, so if you’re interested in taking part, please visit https://kidneyhealthgateway.com/trials/genetic-study-for-kidney-patients/. It’s strictly an observational study as they are trying to learn the genetics behind kidney disease and there is no medication involved. This looks like a great opportunity to gather data from as many patients (and family members of patients) as possible to help piece this genetic puzzle together.
Finally, I’m happy to say I’m working with and learning from a great group of volunteers at Nephcure New England as we prepare for the 2nd Annual Boston Countdown To A Cure taking place in Quincy, Ma on Saturday September 26, 2020. I’ll be going into more detail on this and some additional events over the coming weeks and months.
On that note, looking ahead to my next post, I’ll elaborate a bit more on the Countdown To A Cure and my upcoming fundraising and awareness campaigns. In addition I’m going to look at the state of kidney health awareness in light of the Covid-19 pandemic and what we can take away from this moment in history.
Extra credit: How are you and your medical team addressing your regular medical appointments during this crisis? Are you pushing back appointments and/or blood labs? Has your dialysis changed in any way? What challenges have you been presented with in light of the current situation?