Swimming to recovery: Amanda's story

I was diagnosed with type 1 diabetes in 2001, aged 18. I got all the usual symptoms, the thirst, going to the loo a lot, and I lost a lot of weight. I had a blood test and was at work later that day when I got a phone call the same day saying I had to get to the hospital immediately.

I was a bit numb. I don’t think I took in half of what I was being told. They showed me how to do injections and I had to show them I could do it, but it’s obviously a complete lifestyle change. I was 18, just finished college, just started my first job in a travel agent, and I didn’t want to watch what I was eating and drinking, inject insulin or test my blood sugar. I just wanted to be like my friends.

I didn’t deal with it, which is why I’m in the pickle that I’m in now.

In my early 20s, I did the bare minimum that I had to do to make myself not feel completely rubbish.

When I was 21, I got flu. I wasn’t taking enough insulin anyway, but because I was ill, I probably needed even more, because you produce more glucose when you’re ill as your body tries to fight the infection. I was admitted to hospital with diabetic ketoacidosis (DKA), a serious problem that can happen in people with diabetes when there is a severe lack of insulin in the body. At the hospital, they said to Mum and Dad, ‘if she lasts the next two hours, she’ll be ok.’

During that hospital stay, it was suggested I speak to someone older who had complications of type 1 diabetes. I think it was to shock me. But I didn’t want to speak to anyone, I didn’t want to know. I was in complete denial.

After I was discharged I thought, ‘I’ll do it all properly now.’ but that lasted for a couple of months. I hid the fact that I wasn’t doing my injections. If my parents asked if I’d done them, and I’d lie and say I had.

If there are any teenagers reading this who have type 1 and have the same mindset that I had – I’m invincible, I don’t need to do injections or check my blood sugar – I want to say, ‘you’re not!’

I don’t want you to be in the same place that I am years down the line.

But it’s also important to remind myself that it’s not my fault. I should have been given more support at the time. Thankfully there is better information and support for teens that are being diagnosed now.

At 28, I was working as a holiday rep in Spain where I noticed my eyesight was getting worse. I was struggling to read the fine print of booking forms.

When I came home from Spain, I had my eyes tested. I was told that as a result of my diabetes I’d developed cataracts in both eyes and retinopathy. Three days before I was supposed to leave for a placement in Venice, I was told I had to stay and have surgery to save my eyesight.

I was angry at diabetes and at that point I was starting to feel it was maybe my fault – I told myself if I’d looked after myself a bit more, I wouldn’t be in this situation.

I had to give up my job and I had two operations on my eyes. Around the same time, I also found out I had Charcot foot – a complication of diabetes where nerve damage means that when you put pressure on your foot, the bone and joints can start to change shape over time. I had to use a wheelchair for eight months.

Once my eyes were better, I started doing art lessons and when I was told I could start walking again, I got a job in a travel agent and met my other half.

Six weeks later, a routine blood test at the diabetes clinic showed that I had 21 per cent kidney function. It stunned me. At that point I wasn’t showing symptoms. It was later that I started to feel tired and sick.

In January 2017 I was put on dialysis. I felt awful at that point, although I was still working full time. That was hard. I was trying to be all happy, selling holidays, but I felt so rubbish.

I was on dialysis for 14 months. At that point I blamed myself. But a counsellor at the kidney clinic said that at the age I was diagnosed, you don’t necessarily have the mindset to be able to deal with type 1 diabetes. Yet you’re treated as an adult patient. She said it wasn’t my fault, that there are special clinics now for teenagers like me who struggle with a type 1 diagnosis.

In March 2018, I had a kidney and pancreas transplant. It’s not very common. The doctors said that as diabetes was the cause of my kidney failure, it would make sense to have the pancreas as well.

They gave me the choice of having just the kidney or both, but it felt like a no-brainer, really. The waiting list for both organs together is a lot shorter as there’s a lot less people on it. Because both organs would ideally come from the same person.

I was called twice by the transplant team. The first time, when they said, ‘we’ve found a match,’ I was a complete mess. They give you three hours to get to the hospital. It was crazy. I had to take a couple of minutes, breathe and just think.

We got there, I had all the checks to make sure I was stable and it was a definitive match. Then we had to wait overnight for the organs to arrive. They have to make sure they’re suitable, but unfortunately the first time the pancreas had been damaged along the way. That’s really disappointing. We just went home.

My second call came about a month later. I was at work when my phone rang. I was a lot calmer that time, because I knew what to expect.

At the hospital, as I was taken down to surgery I felt hopeful, scared, everything.

My recovery afterwards was slow – I developed a bad infection – but my new pancreas started working immediately. Since that day I haven’t needed any insulin. I’m still classed as having diabetes, but I’m treated by transplant. Today, I live life as though I don’t have diabetes.

It took a while to get used to. Even now, occasionally, I think, ‘I haven’t done my injection!’

I still have to be careful with what I eat and my overall health because the medication that I have to take after my transplant can cause type 2 diabetes.

A year after my surgery, as I was getting my strength back, my sister-in-law, Cheryl, saw Swim22 advertised on Facebook. I needed to start being more active, and swimming seemed like a good option. It’s the one sport that I actually enjoy doing. I was still in and out of the hospital, adjusting to my medication, so I signed up for 11 miles with Cheryl doing the other half.

When I started training, I struggled to swim 12 lengths in an hour. There were times I felt like swimming through treacle. But within three months, I was doing 50 lengths in an hour.

My family kept me going. We got into a little routine where three generations would swim together on a Sunday morning. It was a great way of getting us all together.

This year, we managed to rope in Mike and his mum to our team. I’d swum four miles when Covid hit. As a transplant recipient, I had to shield. My consultant still isn’t keen on me going back to the pool, but next year I’m going to do the full 22 miles.

Taking part in Swim22 helped my recovery so much. Despite all the upheaval of this year, I’m in the best place I’ve been for a long time.

I knew about Diabetes UK and I followed them on Facebook. When I signed up for Swim22, I joined a separate Facebook page for everyone taking part. People post about how they’re doing, if they’re struggling. It’s a really supportive place. You get regular emails, there are league tables and there’s website to log your lengths. It felt like I was part of a community.

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