Nina’s Story

Arlene Brailey

I have been ill for 9 years as I had to have my gallbladder removed and one thing led to another. Now 8 operations later, I know I have developed a resistant infection which means I will need antibiotics for the rest of my life.

During the long recovery from surgery, I became jaundiced a few times, and experienced flu-like symptoms where my side became swollen. I was admitted to hospital as an emergency with fever and infection, but doctors could not find the root cause. I was treated with intravenous antibiotics for 4 days for septicaemia and sent home with oral antibiotics. However, I learned this would probably now happen on a regular basis, so I had to expect to come into hospital whenever it happened. I was advised that if I got flu-type symptoms again, or if my finger nails or eyelids turned a yellow colour, I’d to go to A & E immediately.

The last time I was in hospital my consultant said the antibiotics had taken longer to work this time and because of that he was a bit worried. However, it’s been over 2 years since I was last in hospital, which is brilliant, as beforehand I was being admitted every 6-9 months.

What impact did your experience have on you and your family?

In the beginning when I was given the antibiotics, I didn’t have very much information or answers to my many questions. So, my family naturally didn’t really understand what was going on either! But my husband and my children have been a huge support to me, and keep me going, especially on the tough days. My mother was living in Turkey when I was first unwell. She has now come back to live in the UK to help me and provides great moral and emotional support.

I am so aware that with other conditions, such as heart disease or cancer, people get so much information and support, as do family and friends. However, with ongoing resistant infection I don’t really know what to tell family and friends or how to explain it. It’s been such a relief to speak to people about this, like Arlene in ANTRUK, who understand. Some of my closest friends don’t even understand what’s happening with me.

Even now, when planning days away or family holidays, we must consider where the nearest hospital is, should my infection flare up once again and treatment is needed quickly.

To what extent did your experience change your knowledge about antibiotic resistance?

I haven’t been told which infection(s) I have, but I have been told by the medical team that there are potentially 5 antibiotics left that I can take to treat this resistant infection. They also said they hope new ones will be found in the future, to help me in these situations.

I would really like to know what the future holds. But no one seems to know or understand if I will always have these infections or what might happen. I feel I have had this wakeup call, that life is too short not to make the most of each day now.

I didn’t know about antibiotic resistance before my illness, but now I want to do my best to raise awareness about it and help raise funds for research into new treatments too. I want to play my part in making a difference.