August 12th 2013

In August 2013, at the age of 20, Zoë suffered a kidney bleed, but there was no obvious bleeding, just a terrible pain in her side. We had no idea it was so serious and took her to an osteopath who sent us off to A&E where Zoë was assessed. She had a CT scan which showed her right kidney was bleeding internally. It was lucky we were there, because the normal procedure would be to remove the kidney but, for TSC patients, embolisation is recommended to preserve what’s left of it in case there is another bleed on the other side. We were able to contact Dr Amin at Bath who liaised with the doctors about what was to be done in Zoë’s case.

Although the embolisation was successful and she was sent home, Zoë’s digestive system shut down with the shock, and she became very bloated and uncomfortable, so she had to go back into the Royal Berks for several days to go on a drip until that was put right.

She had lost 3 stone, and her haemoglobin was very low, so she was given some iron tablets and told to eat lots of calorific snacks, something that she had avoided to keep healthy!

The photo above shows her at the Newbury Show five weeks later. Nothing was going to stop her going on her favourite annual day out, and you can just see that she is sitting in a wheelchair. She had been through such a lot.

It wasn’t until 2014, when she was diagnosed with LAM, that we became aware of the connection between kidney bleeds, oestrogen and LAM: her hormones had kicked in at the start of childbearing age, resulting in the bleed.