What told you that you had kidney problems?
It was an accident! One day I went to a doctor to find out why my menstrual cycle was not regular. It was about ten weeks since the last period.
The doctor got me to do a mid-stream urine sample and did a pregnancy test from it, which showed that I was not pregnant. Then he joked, “Ah, send the rest off to the lab for the sake of it.” I went home and everything got forgotten.
Days later I got a phone call saying, “come back, came back.” Saw the doctor and he said, “you’ve got blood in your urine,” and he arranged a referral to a kidney specialist (Nephrologist – in those days).”
This made me look at my own urine for the first time. The bright red look of it scared me. “Oh No.” I thought. “What’s the kidney specialist going to say to this? I had better start drinking more water.” This symptom is medically known as Hematuria.
How did you find out your disease?
Once I saw the specialist, we got on like a house on fire because he used to look after me when I had uncontrolled epilepsy. So I didn’t have to tell him my medical history. He sent me for a kidney biopsy.
Someone used an ultrasound to find my kidneys and injected a local anesthetic, took a sample and returned it to the lab for the results to go back to my Nephrologist.
I got worried about what was wrong with my kidneys. I got this pain in my side – in hindsight, it was my right kidney. This terrible pain would not go away until the diagnosis came back.
What was the disease?
My specialist said, “it’s just IgA Nephropathy, don’t worry about it just go out and enjoy life!”
I had no idea what to think about my kidneys until many years later I got Renal Failure.
This was the worst advice I have ever been given! If I had looked after my kidneys or known what to do, this may not have happened.
What’s your advice to others who are getting checked?
- Don’t delay getting a diagnosis,
- Research your disease, learn what is normal for that disease,
- Accept that disease as part of who you are,
- Join a support group or contact Kidney Health Australia for advice, and
- Don’t worry about what’s wrong emotionally or your condition will make things much more difficult for you and your Renal Physician (Kidney Specialist) to manage. The moment that I stopped worrying the pain went away instantly.
Don’t Worry, Be Happy!
If your Renal Physician or Nurse do not educate you or answer any questions about your disease, get a different opinion. Find someone who will educate you!