Our Stories

•  David's Story

I’m 42 year old, and was diagnosed originally with asthma six years ago. I may have had problems before this but because I was a smoker, I didn’t realise there was anything really wrong. When I started to notice a problem I saw my GP and he diagnosed asthma. Sometime later, I saw another GP and mentioned that I was really struggling. He decided to do some more tests, suggested there was something wrong and referred me to the consultant. The consultant ordered loads of tests (this was four years ago. But before I’d got the results of these tests, one night I was gasping for breath and eventually I was rushed into hospital. They didn’t keep me in and I got my breathing under control. However following this I was unable to sleep properly as I felt too scared to sleep. Once the results had come back, I was referred to Southampton and they found out that I had COPD caused by alpha-1 anti-trypsin deficiency. To be honest this diagnosis was better than I thought as I thought they were going to tell me I had lung cancer. I was then referred to Papworth Hospital near to Cambridge in England, to see if I was a possible candidate for a lung transplant. After initially being relieved about my diagnosis, to be then told I was going to be referred for a transplant this terrified me (it wasn’t exactly what I had in mind for my life plans!) Papworth told me that although they felt that I was a candidate, they thought I was too fit at that time and should wait.

I obviously had to tell my work what was wrong with me, I thought they’d give me the sack, however they were really good and kept me. However I then started to get worse and they finally had to get rid of me, because I was just unable to do anything.

I then had a couple more stints in hospital and needed oxygen all the time. I was then re-assessed again by Papworth and put onto the transplant list in 2005. I felt I’d deteriorated so badly that I wouldn’t make it. My life had become non-existent and I was only leaving the house to come to hospital for physiotherapy. I wasn’t eating properly and just basically stuck in my bedroom.

The centre called me at 4.30-5pm and was told they had some lungs for me. From there it was like a dream, well not a dream but a bit of a nightmare really! I didn’t think I was going to make the journey. The mixture of the relief and the scary part of the operation made me panic and I felt that this was the longest journey of my life. It was only when I got to papworth and was on the trolley going into theatre that I began to relax! It had crossed my mind to say I didn’t want the transplant anymore. Recovering from the transplant was better than I thought. I thought I’d be in loads of pain and it would take a long time to recover. The recovery was quick and I was only at Papworth for 8 weeks in the end. I think the transplant has been worth it but the side effects of the medications, my infections and the osteoporosis (which was caused by the steroids before the operation) have now stopped me from still doing the things I want to do.

I’m now going to Salsa dancing and I’m starting life fit next week. It took a long time to relax my body again after so many years of fighting for my breath. I hope to return to work, the only thing that is going to stop this is if my osteoporosis pain gets worse. If someone needed a transplant I’d definitely recommend the opportunity. There are no guarantees with it but given the quality of life I had compared to now I’d definitely go for it.

•  Mrs A 's Story

Throughout my adult life, my health was very good, I rarely visited the doctor. When I was about 60 I had a very bad cold, which went to my chest and I got an infection in my lung. It took quite a while to get over, however my breathing wasn’t very good at all. The years afterwards it seemed to get worse, plus I was a smoker so I didn’t help myself. Then about a year ago my lungs collapsed, I was rushed to hospital and was given 3 hours to live. They put me on a ventilator and of course my family were all around me (so I’m told). I then came to and then the same thing happened again and the family were called in again. Eventually I started to get slowly better and I was in intensive care for one month. Then I went onto the ward and was there for 3 months, just before Xmas I went home. It felt great to be home but I felt weak, couldn’t manage much and had to just sit around. Then I went to the physiotherapist, who was excellent, she helped my condition immensely and I was able to attend pulmonary rehabilitation. Since finishing I now go to ‘Life Fit’, which I find excellent. I am now walking with a stick, which I don’t need to use when I’m exercising. My ambition is to now go out on my own. Its going to take me along time to walk into town on my own, which I recently did with my husband, but I’m really determined about things!.

I asked my doctor, whether he expected my life expectancy was shortened (which is ridiculous when you’re 75!) He said not necessary when he showed me how much my lungs had been damaged against others. This really reassured me. My family have all been so good. I don’t think I could have got through this without them.

I managed to buy a small oxygen generator, which is half the weight of a portable cylinder, which enabled me to get away on holiday without having to cart any cylinders with me. I had a lovely 2 weeks in Dinard and now that I have this portable I can get away at the weekend to anywhere.

My mother is nearing her 100th birthday so I’ve got high hopes!!

•  Mrs M 's Story

When I left school I did hairdressing, but the chemicals in the hairdressers meant I had to give it up. I then went to work for Gruts. I started dressing the windows, in the mean while I did nighttime drawing classes (this was my best subject at school). I was then asked to do the photography for Gruts. After a while, I then set up on my own and had my own studio and art gallery and sold my artwork. I also did art therapy at Castel. I retired when I was sixty-five but, I still do further education and run various art courses.

I had croup when I was 2 years old. That started my asthma; I was always quite poorly as a child, kept on getting pneumonia. They even had to get a Dr out to me during an air raid! I was told I couldn’t swim etc as a child. Then when I was 20 years old, it disappeared completely, I played a lot of sport etc. then and it was never a problem. I never smoked, obviously knew I shouldn’t. Then when I was 60 years old it came back and it started to get worse. The winter its worse, especially in the evenings.

The asthma makes me feel weak. I don’t feel like doing much around the home. If I get really bad, I have to go round to my sisters. I cough some-times and I bring up a lot of phlegm in the mornings. I enjoy going to keep fit twice a week and generally I feel fit.

I ’ve been going to Breathe Easy since it started a couple of years ago. I saw it advertised in the press. I enjoy the meetings; we’ve had some good speakers, some interesting talks. I feel so much better seeing everyone else.

•  Mrs R 's Story

I grew up with my mother making a lot of fuss about me about my weak chest. During the war my oldest sister and I had whooping cough. This is probably when the damage to my lungs occurred.

I first saw a doctor about my cough 37 years ago, but he seemed to be more concerned with the fact that my aunt had TB and I was friendly with a lady who’d had TB. He never identified me as having a lung condition and didn’t say much to be honest. I then continued just to have persistent cough. At one stage I went into hospital and I’d told a doctor there that I had whooping cough as a child, but he didn’t give me the name of my condition or anything.

I use to go on holiday with my children and at times I just wasn’t well at all. I was fighting to do simple things, as I felt so generally washed out and had no ‘go’ in me. That happened quite a few times. Then I kept on going down sick with bronchitis, which always seemed to always to be around March time. One of my doctors said that I had asthma, so I was put onto various inhalers over a number of years.

Last year, I wasn’t very happy because I felt unwell and my GP then referred me to the consultant. It was then that we found out the extent of the damage to my lungs. He diagnosed bronciectasis. Bronchiectasis is the tubes have become damaged and I don’t get enough air into my lungs. I was told by the consultant that I had 54% output of my lung capacity and that people could manage with just one lung, which I knew about, because my aunt had her lung removed because of the TB. Also he said that I needed to push myself as much as I could. Which I’d been doing, bringing up my family for the last 30 odd years!! He also told me there was no cure. After hearing this I really, really felt angry with the fact that nobody had diagnosed me earlier, that was the biggest problem at that stage.

It took a few months for the anger to work itself out and to start being positive. The anger in me was also related to the fact that my husband always had plenty of energy and me being not being able to keep up with him and I’d never had an answer for that for many years. The times I was in bed with bronchitis and a growing family made it very hard for me to deal with. This I how I felt at the time. I just wished I could have been a normal mom being able to do the normal things with them. There was times when I went down with the bronchitis and not knowing what it was….I use to say to the kids go and get a normal mom or to my husband go and get a healthy wife. There was a lot of times struggling to do normal things.

My husband understands now and so do I. If I’m tired after my meal I just lay on the settee and it charges my batteries again.

I saw the Breathe Easy group advertised in the local paper in June last year. I decided that I’d go and see what it was all about. It was good to meet up with others with lung problems as well. To realise that mine was mild compared with some of the others who came along to the group. Its good to meet up with the group once a month.