Re-Referal for kidney problems?

[Pinnypinny]

Hi all, I was diagnosed with a reflux, hydronephrosis/glomulanephritis (my nephrologist interchanged the terms? All I know is he described it as an oversoaked heavy sponge.), and scarring in my right kidney Feb 2013. I’ve been told I have 2% function loss in my right kidney, but my left kidney picks up 1% of the slack (so overall only 1% loss). I had a history of UTIs from an infant, though grew up thinking these things were completely normal and only about 2 were ever treated and those were under the age of 5. I am extremely bad at actually realising when I have a UTI.

When I was pregnant with my son (now almost 1yo) I was referred to another hospital closer to where we had moved, they monitored me throughout the pregnancy. I had an extremely tough pregnancy. I had a right sided notch affecting blood flow to my son and was put on low dose daily aspirin for the entire pregnancy, we had extra scans to ensure my son was growing normally (they estimated he was 90% centile, but he was born 9th and it was labelled IUGR). I was caught leaking glucose into my urine and when monitoring my blood sugar levels they noticed post meal spikes and labelled me as having gestational Diabetes, and towards the end of the pregnancy my already high blood pressure became a lot higher, and my swelling got so bad I would get pitting edema in my ankles at the end of the day, and couldn’t put shoes on. After my son was born they were supposed to refer me to nephrology at that hospital to monitor my kidney, but they didn’t so I kind of got lost in the system.

We’ve now just moved back to the original area, and I feel I should get referred back to my original nephrologist as I haven’t had a kidney check since Oct 2016 and he told me I had to be monitored after my son was born. Apparently I have to see my GP again for this (this Tuesday). I’m a little concerned my GP may not take me seriously? I’ve had very severe throbbing back pain recently not quite sharp but not quite dull, all right sided and below the rib cage but way above the hip, not directly next to spine but more the side and curving round to the front. Some stomach aches too in lower belly which I’m not sure if it’s a UTI.

Anyone have experience with any of these conditions? I’m right in thinking it’s a good idea for me to get referred to a nephrologist again? Did anyone go through pregnancy with kidney problems, what were the effects on your kidney? Any input or advice anyone can give me would be greatly appreciated.

-forgot to add I had a persistent history of proteins in urine, up until I was pregnant.. I haven’t had any dipstick flag up proteinuria between 10weeks pregnant-6months after he was born? Seems very odd to me!

Thank you

[Celtic]

I would hope that your worries about your GP not taking you seriously at Tuesday’s appointment turn out to be unfounded. From what you have said about your lack of monitoring under those who are supposed to have been monitoring you recently, it does sound as though you have been very let down. Ensure that you come away from your appointment next week with a referral to a nephrologist in the pipeline - be firm if necessary. Only you know how you feel, it is your body and your doctors are paid to care for you. Good luck.

[Sally10255]

Hi, My kidney numbers were off so my GP had me do an ultrasound then on to kidney specialist. It was determined I had a 6 mm stone, my left kidney is shot either from stone, born that way, extremely rough pregnancies where my blood pressure was sky high and I retained insane amounts of water, or from when I was hit by lightning. From what you described to me you have several factors about your kidneys that need to be addressed by someone with kidney knowledge. UTI’s alone can cause damage. Please be persistent. Many doctors have no clue. So many are suffering from kidney issues and most don’t know. Great luck.