Tag: Renal angiomyolipomas

A Kidney Bleed and Embolisation

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November 15th 2013

Here is the photo our neighbour, Betty, took of Zoë because she said she was looking so well after suffering a kidney bleed a few months before.

As Zoë reflected in RARE,

‘Looking at the photo, I can really see the colour in my cheeks, compared to the photo Mum and Dad took of me the day after my embolisation. I take that as a good sign that I’m looking and feeling better.‘

August 13th 2013

She had been through so much in those past three months: a terrible pain in her back had revealed itself, after blood tests and a CT scan, to be a kidney bleed resulting from the rupture of one of her renal angiomyolimpomas (AMLs). We were very grateful to Dr Amin at Bath who was able to liaise with the doctors at the Royal Berkshire Hospital, and advise them that an embolisation was the best course of action instead of removing the kidney because she may need it in the event of another renal AML on the other side.

The embolisation was done under sedation and a local anaesthetic, and took several hours. She had lost a lot of blood and needed a transfusion. However, even though she was sent home a couple of days later, her digestive system shut down, and her stomach swelled up so she had to go back into hospital to go on a drip to get things moving. All in all, she had lost three stone and had become anaemic, and it took several months before she was totally back to normal.

As she learnt later, these Renal AMLs were connected to LAM (Lymphangioleiomyomatosis) because of the increased levels of oestrogen as she entered her twenties, and this was to have a profound affect on her life.

Kidney Embolisation

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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.