As I’ve navigated my Crohn’s disease journey over the past 15+ years, I’ve often heard that if you have one autoimmune disease, it’s not uncommon to develop another. After a quick Google search yesterday, I found that according to this article in Maedica, about 25% of patients with an autoimmune disease have a tendency to develop another. Which is where this new chapter in my story begins. As most people will be spending the next few weeks counting down to Christmas and New Year’s, my own holiday countdown just got eclipsed by a new one that ends with a now-scheduled kidney biopsy on January 5, 2021.
Over the past few weeks, I’ve been back and forth to the hospital getting repeat labs done, checking creatinine levels in my blood and testing for protein and blood in my urine. My first set of labs in November was originally done for a January follow-up appointment with my nephrologist — just a typical, annual appointment to monitor how things are going with my kidneys. But, when the results came back and showed my kidney function was trending in the wrong direction, we repeated those labs and scheduled an in-person visit this past week to talk about a biopsy. I’ve now had three sets of labs done in the past month that all showed high creatinine levels in my blood, microscopic hematuria (blood in urine not visible to the naked eye) and proteinuria (protein in urine). My nephrologist is thorough and the watch-and-wait period is officially over.
At this point, all signs point to an autoimmune form of kidney disease called IgA nephropathy, but only a biopsy can confirm the diagnosis. While this may appear to be sudden, I’m not surprised at what’s happening. I had my first referral to the renal clinic back in 2016 when my gastroenterologist then noticed elevated creatinine levels. But, things settled back down, my labs were OK and time went on. In 2018, things escalated when I saw visible blood in my urine — a first for me — and I wound up back in the renal clinic under the care of a nephrologist. Since then, we’ve just been monitoring my labs and looking for signs of disease progression. Things looked stable for a while with just microscopic hematuria, but now there’s protein and elevated creatinine.
There are not always obvious signs when kidney function declines, but I can say that for the past three months, I’ve felt pretty crappy overall. I personally view this as serendipitous timing that my labs for my January appointment fell right when I was at my breaking point. There were a few nights in late October/early November that I was in tears because I was so tired of feeling tired, tired of waking up five times a night and tired of feeling nauseous and not myself. I’ve come to know my body well over these years dealing with Crohn’s disease and I knew something wasn’t right, I just had to wait for the labs to catch up to how I felt, finally giving a clear indication of what was happening and what to do next.
While I’m not looking forward to having a kidney biopsy done and I’m feeling a bit anxious about the whole thing, I know I’m in good hands and it’s the right next step. At this point, I can’t say enough how important it is to have a doctor who is truly a partner with you in your healthcare. My nephrologist spent over half an hour sitting with me and talking about the risks and benefits of having a biopsy and what was happening with my kidneys. The thing that really resonated with me during our conversation is when he told me that he never recommends a biopsy unless he’s at the point where even if the worst-case scenario did happen, there would be no question for him that the biopsy was the right thing to do. I know a biopsy is not a decision to take lightly, but I also know there’s a huge benefit to discovering what is happening and having all the information available so that we can make the best decisions about care going forward. If the biopsy confirms IgA nephropathy, it will also give valuable information as to the aggressiveness of the disease, how much damage has already been done and clear guidance for treatment.
I don’t think I’m nervous. I feel confident in the abilities of my healthcare team and the facility that I’ll be at, but I am anxious. I feel my stomach tie itself into knots when I think about the actual procedure (confirming to myself that I would make a terrible doctor or nurse, as I would likely pass out for everything). But, one thing I’ve learned from being a part of the inflammatory bowel disease (IBD) community for almost 20 years is that you are not alone in your journey and many others are going through the same thing you are. There is strength in knowing that others have already faced what you are about to, and comfort in knowing that an entire community understands what you are going through. And, on the plus side, I should be nicely sedated for the procedure, so there is that!
Aside from knowing that I’ll be one step closer to knowing what’s happening with my health, the silver lining I see right now is that I’m still allowed to eat plenty of protein! Those who know me well know that I love a good steak and meat is the one food that is always, reliably, Crohn’s-friendly for me. As we’ve been monitoring my kidneys over the past year, I’ve been increasingly concerned about how much meat I eat and whether it’s adding fuel to the fire. But, even though my body is spilling protein into my urine, eating less won’t stop the disease. With IgA nephropathy, the immune system releases immunoglobulin A (a protein that helps your body fight infections) and those immunoglobulins get stuck in the kidneys and cause inflammation, which then causes the kidneys to leak blood and protein. So, the protein leaking is a symptom, but me eating protein isn’t causing the damage. I’m not going to worry so much anymore about trying to find vegetables that don’t bother my Crohn’s; they seem to be elusive or just nonexistent anyway!
As I continue to think about my own health journey, I also realize how easy it is to feel helpless. I’ve tried for years to control my Crohn’s disease with just diet and lifestyle. And while I’ve been able to stay in remission for about four years without medications, it appears that while Crohn’s was under control, my immune system was busy launching a coup. We can be doing everything “right” and yet, sometimes, there are things that are simply out of our control. For someone like me — who likes to be in control — that can be a hard thing to accept. To that end, I’m continually astonished that any of us are even here when I find myself constantly contemplating how many things can go wrong. Yet we are here, and we strengthen each other, support each other and care for one another. I’m just one tiny speck on this planet with an entire healthcare team looking out for me and doing everything they can to help me live better and longer. For that, I am truly grateful.
Today, I choose not to feel helpless. Instead, I will continue to be as healthy as I can in order to give my body the best chance it has to fight whatever comes its way (even if it’s fighting itself). I will continue to look to my healthcare team for their knowledge, care and guidance, and am grateful that I’ve been fortunate to have many different doctors over the years — especially right now — who make decisions with me and work tirelessly to care for me and others like me. 💜💚