This is my first time on this site while travelling to London for the cistinuria patient day. I look forward to seeing some of you there.
A bit about me... I am now 50. I had my right kidney removed aged 15 because it was filled with stones and had failed. I was then diagnosed with cystinuria when I was 21. I had problems during pregnacy with stones forming very quickly. I had emergency surgery 5 weeks after giving birth when the kidney became blocked. This led to my diagnosis and prescribed penecillamine.
Over the years I have experienced various ways of removing stones at St Thomas and then Guys.
I experienced the first lithotripter machine at St Thomas as I see some others on here have.
I have followed a low protein diet for a number of years with the guidance of Guys Hospital and am convinced this makes a difference.
I have had periods when I could make stones within three to six months of surgery or even less. I recently had a large stone removed which was my first in 7 years.
I was back at was part time after one week and full time after two. How treatment has progressed!!!
I will be great to speak to others on here and read your experiences. When I was diagnosed the was no information that I could find and nobody I knew had any experience of the condition. I hope this site can also help other who are newly diagnosed.
