Our Stories

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 very 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 frightened 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 expected 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 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 firm what was wrong with me, I thought they’d give me the sack, but 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 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'd expected to be in loads of pain and it would take a long time to recover. The recovery was quick and in the end I was only at Papworth for 8 weeks. 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, and 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 and my breathing wasn’t very good at all. For 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. I was put 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’ exercises, 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 necessarily and then 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 worked in a hairdressers, but the chemicals used meant that I had to give it up.

    I then went to work for Gruts at their shop in the High Street. I started dressing the windows, meanwhile I did night time drawing classes (this was my best subject at school). I was eventually asked to do the photographic work for Gruts.

    After a while, I set up on my own and had my own studio and art gallery and sold my artwork. I also taught art therapy at the Castel hospital. I retired when I was sixty-five, but, I still teach further education classes and run various art courses.

    To go back, I had croup when I was 2 years old. That started my asthma and I was always quite poorly as a child, and often had pneumonia. They once had to get a Doctor out to me during an air raid! and then I was told that I couldn’t swim etc as a child.

    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 is the most problematical, 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 do enjoy going to 'keep fit' twice a week and generally I feel good most of the time.

    I’ve been going to Breathe Easy (now lungevity) 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.