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Justine - Interview 11

Age at interview: 37
Brief Outline: After ten years of illness, including chest pain and collapsed lungs, Justine was diagnosed with a rare lung condition, called LAM, aged 31. She had a double lung transplant in 2006 and has been raising awareness of LAM and organ donation since then.
Background: Justine is single. She is an artist and professional speaker. Ethnic background / nationality' White British.

More about me...

Around the age of 21, Justine had severe chest pain and was rushed into hospital, where doctors told her that her right lung had collapsed. Two weeks later, her right lung collapsed again and she had surgery to pin it to her ribs. The operation took time to recover from physically and emotionally and Justine had counselling afterwards because she’d found it traumatic. She continued living with chest pain for about seven years, never knowing why she had it, occasionally admitting herself to Accident and Emergency. She was usually given painkillers and told that there was nothing wrong.

After talking to her parents and doctor, Justine was referred to a pain specialist, who thought the pain may have been related to her operation. She continued living with chest pain for a further three years.

In 2004, aged 31, Justine felt very unwell at work and was taken to hospital by her parents because she was looking extremely pale. She was told that both her lungs had collapsed and she would need a chest drain. This was a very painful procedure but Justine said that, by this time, she was finding it difficult to breathe. She was later referred to a specialist hospital and diagnosed with a rare lung condition, called lymphangioleiomyomatosis (LAM). LAM mostly affects women in their mid-thirties and forties. In LAM, abnormal, muscle-like cells begin to grow out of control in certain organs or tissues, especially the lungs, lymph nodes and kidneys. Over time, these LAM cells can grow throughout the lungs and destroy the normal lung tissue so air can’t move freely in and out of the lungs.

Justine was told that she was at the end stage of the disease and, without a transplant, would have only twelve to eighteen months to live. She said, ‘Words, emotions, it’s so hard to say. I just felt everything crumble around me. I was a young woman in my prime. When you get told devastating news that you’re going to die or with transplants it’s a 50'50 chance; some people do, some people don’t. And I knew now I was in this category.’

Justine said her lungs collapsed on a number of occasions and, each time, she was rushed into hospital. She set up her own website about the condition, LAM, and when the doctors at her local hospital didn’t know what it was, she was able to refer them to her website (www.justinelaymond.com). By now, her right lung was no longer working. Her left lung collapsed thirteen times in total. In one week, Justine had thirteen lung collapses and was left struggling to breathe on three occasions. She said her family came to say goodbye to her after visiting her grandmother’s stone setting the same day. This was the most difficult part of her experience.

Around this time, Justine was given a new type of surgery but, unfortunately, it did not work. She ended up critically ill in intensive care for three weeks and spent two months on a ventilator (life support machine). She recalled being allowed to have her first sip of water after seven weeks and, gradually, over time, learning to walk again with the aid of a Zimmer frame. In total, she spent six months in hospital.

In 2006, after three ‘false alarms’, Justine was given a double lung transplant. She said she felt ‘amazing’ after coming round because she was able to breathe properly for the first time in years. She said the pain was managed well and, three weeks later, she was discharged from hospital ‘after being ill for ten years’. Later, she got shingles and a virus that damaged her lungs so that, now, she has 60% lung function.

Since her transplant, Justine has been heavily involved in raising awareness of LAM and organ donation in the media, on the internet and amongst friends and family. She has travelled widely and taken part in the British Transplant Games. Two years after her transplant, Justine wrote a letter to her donor family via the specialist nurse [transplant co-ordinator]. She’d like to hear back from them but understands that they may not want or feel able to write back.

Justine now has follow-up appointments every 3-6 months. She takes about fifteen tablets a day and has a machine at home with which she can monitor her own lung function. Justine said she still gets tired but exercises and enjoys doing artwork. 
 
 

 

Justine was told she was at the end stage of her disease and had about eighteen months to live...

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I was diagnosed with this very rare disease called Lymphangioleiomyomatosis, which is called LAM for short. And I was actually told that I was at the end stage of my disease. I had maybe twelve, eighteen months to live, and I needed a double lung transplant to survive.

Words, emotions, it’s so hard to say. I just felt everything crumble around me. I was a young woman in my prime. When you get told devastating news that you’re going to die, or, you know with transplants it’s a 50'50 chance, some people do, some people don’t. And I knew now I was in this category.

But being the person I am, I wanted to be positive and the disease, I did some research with my family, we found out it affects one in a million women only. There is no cure. It’s not genetic, it not hereditary, and I wanted to set up a website to give inspiration and educate people in this disease.

Unfortunately, it didn’t stop there. My lungs kept collapsing and I was rushed into so many hospitals. When I said to doctors I had this disease called LAM, they laughed at me. They never knew what it was, never heard of it. And I was so glad I’ve set up my website because doctors would then hover around and read my illness, and then come back and take me more seriously.

My right lung I was told at this stage no longer worked. I was only surviving on my left lung, which had less than 30% function. The illness actually causes cysts to grow inside the lungs and so the pain I understand now I was feeling, over these seven to ten years, were cysts growing inside my lungs, filling up my airways, making it difficult for me to breathe. The cysts would pop, which would also explain the pain that I would feel, and at this stage I had hundreds and hundreds of cysts.

My left lung then collapsed thirteen times, so overall I had fifteen lung collapses. I was left fighting for my life so many times and one time my left lung had collapsed three times within a week.
 

 

Justine had three false alarms while she waited for a double lung transplant. She didn’t raise...

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I had three false alarms. They were, I think one was when, I think they were all when I was in the hospital. The first one I had, my white blood cells were too high. I had an infection, and they’re not able to give you a transplant if you’ve got an infection. Your risk of survival is very difficult.

The second and the third time, I think it was a single lung not a double lung. And I think it was maybe another time I was sick again. And it’s very hard emotionally when they say you know, “We’ve maybe got a pair of lungs.” And then they say, “Oh I’m sorry it’s not going to happen.” I didn’t want to get myself too excited. That’s when I knew, when they said again on the fourth time, “We’ve got some lungs,” I kind of almost thought the worst. And mentally I’d be prepared for the worst again.

But I also knew realistically, if this one didn’t go ahead, then I wouldn’t be there much longer. And obviously we all, I think everyone knew that. And then we were so happy when they said it was going to happen. It was the best news.
 

 

Justine was thin and fragile when she first came home and found it hard to walk. She could do...

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So you were out after three weeks. In that time every day you saw small improvements?

Yes. I mean I will admit I was very fragile. I was still very thin. I was trying to walk every day. Walking was a bit of a challenge, but I thought if I’ve walked five minutes today, then I’m going to walk six minutes tomorrow.

It’s also your own attitude. You can have this gift, but you have to help yourself to get where you, to get better. And then it was a gradual process. After about three months, I think I was able to do a bit more walking. And then I thought I wanted to start exercising again.

But it was very slow. They didn’t rush in at the deep end, took it day by day. And I started to feel myself coming back.  I lost, my appetite came back. I put on weight. I’m now a woman, I’m not a skeleton. I have all shapes and curves I never had before. And I see it as a wonderful thing.
 

 

Justine felt much better after the lung transplant and was home after three weeks in hospital....

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The next time I woke up was amazing. I felt like I could breathe for the first time in years, when towards the end every, every breath was a struggle. Everything I did, I needed people to look after me, wash me, clean me, I couldn’t do anything for myself.

And I was waving my hands in the air going “Whay, I’ve got new lungs, I’ve got new lungs.” I was so excited and what happened after that is just incredible. Within three weeks, I was out of hospital after being ill for ten years. And living in the hospital for six months, literally three weeks later I was out in the real world, living my life without the oxygen, without my wheelchair. And starting to rebuild who I was as a young girl when I was 20, 21.

I did have some struggles after my transplant. I got shingles and I got a virus on my lungs called RSV that unfortunately damaged my lungs. So today I’ve got about 60% lung function. But I’m still so grateful, it’s so much better than what it was. Yes, I still do get breathless and struggle sometimes, but I accept that.
 

 

Justine felt strong enough to write to the donor family two years after transplant. She wanted to...

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After everything I’d gone through I wanted to get in contact with the system. You don’t know if they’ve [donor family] received your letter, if, but you know, what they’re feeling, thinking if they have. And I waited about two years until mentally I was in the right place that I could actually say everything that happened to me, all the wonderful things that I’d done two years after.

I was able to write to them, and I only hope that they did receive the letter and they will look and think, as awful it was to lose their loved one, something amazing has happened. Something has gone to save someone else.

I would like to hear back from my donor family. I don’t know if that will ever happen, but if I have peace knowing that they’re happy, then I guess I will find happiness through that too.

Yeah. And some people said that they wanted to know more about the donor. How old was the person and all that kind of information. Was that something that was important to you, or not really?

Yes. I knew how old the man was. I knew that he was 42 and that’s all I’ve been told. If I’m honest, sometimes I wish I would hear back from my donor family to help me with my healing, as I’ve said, but it may not happen. But that’s how it is.

So I could learn more about this person to see what an amazing person it was that gave me this opportunity. I think what donor families go through must be so traumatic but if they can see the goodness of a story like mine and others, how well we do afterwards. And lets hope that they get that same feeling of like, “Wow,” and for me if I heard back, it would also make me feel “Wow.” But then I have to accept that it may not happen.
 

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