The Big Reveal
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.
As I wrote previously, my ultrasound yielded no new information. From the outset it was suspected by both my primary care doctor and my nephrologist that the cause was my high blood pressure. Diabetes and high blood pressure are the two most common causes of CKD. I didn’t have diabetes in my history at all, and since I was on blood pressure medication it seemed like high blood pressure was the obvious choice. Once again I was thrown a bit of a curve ball.
Okay, Just A Little Pinprick
For those who haven’t been blessed with the experience of a kidney biopsy I’ll run down what I do remember of the experience. First plan on taking the day off because it’s a day long affair. I was driven to the hospital early (because I wouldn’t be allowed to drive home), and after a short wait was pulled into the prep area which would also later serve as my recovery room, where I had more blood taken from me for labs. I had the IV inserted which would carry the anesthesia that would sort of knock me out. I had enough wires, electrodes and what have you attached to me that I was quickly looking like someone’s middle school science project.
After a while I was wheeled into the operating room and introduced to the surgeon, anesthesiologist, and other physicians/nurses who would be carrying out the biopsy. This went smoothly and they were friendly and informative, explaining what I could expect. Shortly thereafter they gave me the anesthesia. I would be awake for the operation but wouldn’t feel much pain. I had to be awake so that I could turn for them and have myself positioned correctly.
I got really tired and did start go out for a bit, until I felt the sharp poke of a needle going into my kidney. It was uncomfortable but not incredibly painful due to the anesthesia. I must have reacted though because one of the staff started explaining to me that the needle was in. All I know is if I wasn’t numbed up I would have been in some serious pain.
After that I weaved in and out of consciousness. They woke me up briefly to explain that everything went well and to give me some follow up instructions. I remember almost none of it since I was still out of my mind at that point. Then I was wheeled back into the prep area where I fell back to sleep for several hours. I finally woke up and had some of the side effects of the treatment explained to me and was sent home with instructions not to work the following day. There would be some pain at the site of incision and I would be tired much of the day. My side was sore for a couple hours but I eventually drifted off to sleep once I got home.
Without Any Further Ado…
With a good bit of trepidation I went in for my follow-up appointment with my nephrologist to finally get the results. As it turns out, it wasn’t high blood pressure at all. The diagnosis was IgA Nephropathy, also known as Berger’s Disease. It’s a confusing disease that’s hard to describe and I only recently got to the point where I could pronounce it correctly. I swear they name these diseases as a way to mock us simpletons. Since I can’t articulate it quite as well, I’ll just quote the description that the Mayo Clinic site gives us:
IgA nephropathy (nuh-FROP-uh-thee), also known as Berger’s disease, is a kidney disease that occurs when an antibody called immunoglobulin A (IgA) builds up in your kidneys. This results in local inflammation that, over time, can hamper your kidneys’ ability to filter waste from your blood.
The site also goes on to say that it typically progresses slowly over many years. In my case, based on my creatinine lab history, it appears to have come along quite suddenly and progressed quickly (over the course of a year). While this does happen in some cases, it’s still very unusual. I’ve read a number of patient stories online and they always describe a progression that drags very slowly over the course of 10, sometimes over 20 years. So to see my numbers suddenly jump late in 2018 from out of nowhere without any hint of creatinine issues before that is odd to say the least.
Now that we know that IgA Nephropathy(IgAN) caused my CKD, what could have caused the IgAN? That is the new question that probably won’t be answered any time soon. Based on my case, there’s no way to know. The suspicion is that it could have been caused by an infection during a bout with the cold or flu, but that is just a guess based on prior case histories.
Cure IgAN? Yes IcAN!
Well, actually no. Currently IgAN can’t be cured, nor can it be prevented. Doctors will prescribe different types of blood pressure medications to slow the progression, as mine did. I will be one of the 1 out of 4 who will have kidney failure as a result. At that point the options will be the same as anyone else dealing with kidney failure – dialysis and/or transplant.
Researchers are continuing to learn more about IgAN and it’s causes, but it’s a very slow process right now. In the future I will try to post on what is currently known about the disease and where things could be headed. There are some interesting clinical trials out there, but being as I’m already at stage 4, I’m not a good candidate for those. For people at stages 1 – 3 it’s definitely worth checking out if you are a candidate for some of these trials. The following list is just a few of the sites that provide further information on clinical trials of IgAN medication:
Also don’t forget to check out The IgA Nephropathy Foundation Of America (https://igan.org/) for further information on IgA Nephropathy and to help contribute to the IgAN community.
In the weeks since I received my IgAN diagosis, I’ve sought a second opinion (it was confirmed as expected), and saw my GFR bounce around a couple times while my blood pressure medications were adjusted. To date my GFR is hovering in the 20s. The good news out of this is that based on the biopsy results, there was no inflammation going on which means that it wasn’t active. The kidney function will still continue to go down, but lack of inflammation at least keeps that process from accelerating even more.
In a future post I’ll look at the progress of CKD related treatments and the search for a cure. I’ll also look at the various community efforts with regards to fundraising and the work people and organizations are doing to help improve the lives of those living with or approaching kidney failure.
Disclaimer: I can be considered a lot of things, but a medical professional is not one of them. The Internet is not a medical facility. Always make sure you consult with your physician before making any medical decisions.