This disease put me on life-support! Most importantly this is not a kidney disease instead, it is “an immune disease that affects the kidneys.” To understand it we first need to know: What is IgA?
We have five classes of antibodies commonly known as immunoglobulins (Ig): A, D, E, G, and M. IgA is commonly found in all of our mucous membranes including saliva, tears, mucous membranes that line the intestines, and bronchi.
What does IgA do?
IgA combines with a protein in the mucous (medically known as mucosa) and defends these body surfaces by seeking out foreign microorganisms and triggering an antigen-antibody reaction. When this happens the common symptom is known as inflammation, a cough or other respiratory infections when referring to the bronchi.
How does this cause IgA Nephropathy?
When IgA is catching antigens (foreign substances, viruses, or bacteria), IgG joins onto it forming an immune complex which travels through the bloodstream and eventually gets caught at places of filtration; the most obvious of these is the kidney.
Unlike many other diseases that affect the kidneys, IgA/IgG eats away at the glomerulus (filtering part) of the kidneys very slowly. It can take many decades before anything is noticed unless a very astute doctor notices symptoms in the urine.
Commonly include proteinuria (protein in the urine) and hematuria (red and white blood cells in the urine). Other clinical signs will be the increase in body waste starting to build-up in the blood: high creatinine, high urea, and uric acid.
How this affected Irene:
When I was diagnosed the biggest shock was the fact that my urine looked like blood! So I started to drink water heaps to try and change this, and so should you, but don’t make the same mistake as me.
I became an aquaholic and drank water to the point of drinking close to four litres per day! My Renal Physician said: “Four litres is too much, whereas two to three litres is good for you.” Unless edema becomes an issue, follow this rule.
Later I got depression and this emotional stress led to the renal failure, so I have learned not to get too emotional ever since.
My renal nurses have trained me to self-monitor everything from my blood pressure, weight, and more. I went nuts with some tips that they gave me, so they tease me as their model for other patients.
Don’t ignore the Warning Signs:
Prior to the renal failure, my skin was starting to go black and I had this terrible body odor which, no matter how much I showered or hand washed, wouldn’t go away. Later I learned that this is uremia caused by the high content of urea in the blood.
As a result, I lost my job at the time because people 1. couldn’t stand the smell, and 2. would not believe that I was cleaning myself.
If not treated early or monitored the end result can be kidney failure which causes a host of other symptoms including an inability to wee, pain in the kidney area of your back – flank pain, and many strict dietary guidelines.
Other complications include fluid retention (edema) due to decreased glomerular filtration, high blood pressure, and dietary restrictions as things get worse, not to mention drug side-effects.
There is no cure. Only drugs and the choice of up-to-three forms of renal life-support.
Life-Support (Stage 5 of Kidney Disease):
Haemodialysis. This is done by connecting to your bloodstream via a fistula (usually on arms) or a graft elsewhere on your body. Your blood runs out and into a machine which has a very fine brush that acts as a filter, and back into your body filtered. Commonly done three times a week in dialysis centres but home dialysis is becoming more readily available.
Peritoneal Dialysis. I chose this because part of your body acts as the filter your peritoneum (sack that all of your abdominal organs are in).
It’s done by inserting a catheter into your belly and you hold some fluid (usually between two or three litres, depending on your body size) inside your belly for a certain number of hours then let it out again, and the body waste comes with it.
Leading up to dialysis, you get introduced to people who will be your new family – dialysis nurses. They are on-call to you 24/7. Same applies to Transplant. The moment you are unsure of anything, you can call your nurse!
Of course Kidney transplant. I found this very confronting and it is a big journey in itself, due to the many drugs that you have to take to stop your body from attacking the donated kidney. These can cause many side-effects, the biggest shock was losing a large percentage of my hair; another alternative drug gives you lots of hair.
So if you experience any of the above-mentioned warning symptoms, swelling (edema), red urine, cloudy urine, dark skin, get smelly for no reason (uraemia), urinary tract infections (UTIs), or have difficulty weeing; I urge you to get your kidneys checked. The sooner treatment begins the lesser the complications.