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Hello. I am 25 years old and have suffered with Urological problems since birth.
Long story short, it’s affected my entire life. I am severely prone to getting Urinary Tract Infections and/or pyelonephritis (kidney infections), which always result in me being admitted to hospital as I have become resistant to many anti-biotics after being treated for these problems so many times in the past.
Things were apparantly very rough when I was a child (having septicaemia and being near fatal a couple of times) but to be honest I don’t remember much of that, I think I’ve managed to block it from my memory as a coping mechanism. What I do remember as a child was being bullied in school, as part of my condition I was unable to control my bladder, leading to wetting myself most days and with kids being kids, I got picked on for that. Things settled down for me in High School thankfully, I had less infections and incidents of incontinence.
However in July 2014 everything flared up again, I got a kidney infection which progressed onto me having septicaemia and pneumonia also. I was put on high dependency (not quite intensive care) and since then my life has been very difficult. I lost my dream career (I had managed to become a Police Officer) because of my health issues and it has all affected my relationship with both family and girlfriends as I have struggled to cope. My kidney function began to get worse and worse, and I had my left kidney removed in July 2015.
It was then deemed that to prevent any further damage to my remaining kidney, I needed major bladder reconstruction to manage the bladder pressures and stop reflux up to the kidney. I had this done in april 2017, and as a result I have to self catheterise to go to the toilet, as I am unable to empty my bladder on my own (was expected and agreed to when I had the surgery, as the reconstruction stops the bladder muscles co-ordinating properly.).
Between the kidney removal and bladder reconstruction I continued to have frequent UTIs / kidney infections and my remaining kidney took further damage. Since my bladder reconstruction I had a bit of time without any problems and everything was stable, however in the past month I had surgery for a kidney stone (first time I’ve ever had one) and then had an infection as a result of the operation (as I said earlier, very susceptible to infections when things are ‘played around’ with.).
My egfr is currently 20, it was 19 last week (the lowest it’s ever been) and my creatinine is currently 270. My urologist and nephrologist hope that these will improve slightly after having the kidney stone removed, however it is only hope. I see my specialists every couple of months to monitor my condition and in the long run, the plan is dialysis and/or a transplant, but no one seems to know how long that could be, as I can have periods of stability but just one infection or another kidney stone could bring my kidney function down enough to get to that point.
I’ve never posted on anything like this before, but I am just feeling extremely down about it all at the moment and feel like it is all relentless. I’m not sure posting this will help me in anyway, but it’s worth a try I guess. If anyone has any advice, or has been / is going through something similar, then it would be nice to hear from you and to know I’m not the only one suffering. I also may be able to share advice from my own experiences. Thankyou for reading 😊
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