This guest blog is from Steph. I met Steph originally on Asthma UK’s online forum. We didn’t know who each other were. I was Olive86 and Steph was disco dolly or DD for short if I remember correctly!!! We chatted through the forum for a few years and then with the creation of Facebook we chatted more and eventually met about 8 years ago perhaps. I was still living down in Winchester and Steph was at uni in Birmingham. I drove up to meet her and we had a great day. It was like we had known each other for ages. We talked and talked and had many laughs. It was lovely to meet her as we were both facing the same problems and on sub cut Bricanyl so it was great to meet her. Over the years distance has kept us apart but staying in touch online is second best!!
Steph has achieved so much despite her asthma. Her most recent achievement is that she had just completed her PhD and is now a Dr. Many congratulations!!
For me Steph is probably the one person who I can identify with the most in asthma terms. She has had a similar journey to me with asthma and had to deal with being abroad and going into hospital. Deal with university and asthma etc etc.
Here is Steph’s guest blog!!!
How long have you had asthma and how did you get diagnosed with asthma?
I first had problems back in November 2005 so scarily nine years ago now. I was 17 at the time and I had just come back from a trip to Paris to celebrate a friend’s 18th birthday. On the following Monday when I was going back to school, I told mum I didn’t feel very well and she told me I had been burning the candle at both ends and to go to the walk-in centre at lunchtime if I still felt rough. By lunchtime I felt terrible so went to be seen. I had never had any chest problems previously. After waiting for what seemed like forever, I saw a nurse who took one look at me, gave me my first nebuliser and called an ambulance to take me to A & E. After being there most of the afternoon, I was sent home with a blue and brown inhaler and a spacer. On the Wednesday of that week, I went back to school but in my first lesson, my biology teacher took me out of the room and called my year head to send me home as I still couldn’t breathe. My mum collected me and took me to our GP where the receptionist reluctantly allowed me to be seen. Once again I was sent to A & E, given some nebs and sent home later that evening with some prednisolone. On the Friday morning, I received a phone call from the hospital asthma nurse following things up as I had had 2 admissions n as many days. She was not happy with how I sounded on the phone and asked me to ring the GP surgery asking for a home visit. Both of my parents were out at work, it was the beginning of November and was cold and pouring with rain. I rang the surgery and was told I was not elderly or terminally ill so did not qualify for a home visit and there were no appointments left so to ring back on Monday. I relayed this conversation to the hospital asthma nurse when she rang back and I was told to go back to A & E and not leave until she had seen me. I had my doubts but got a taxi to the hospital and give the nurse her due, was met by the asthma nurse on arrival, saw the chest consultant and was admitted for 4 nights. So not really a positive first experience but I would say it took a year of monthly hospital admissions before brittle asthma was finally decided on as a diagnosis and that it was not just dysfunctional breathing.
How did you feel when you got diagnosed with asthma and has this had a big impact on your life, and friends and family?
I was scared. The first night my parents left me in hospital, I cried most of the night. It didn’t help that at 17 I still felt like a child but because I was over 16 I was admitted to an adult ward which was full of old ladies. I have since learned that old ladies can be very funny! Once I had got to grips with it and done my research I went through a phase of being angry and asking why me? Then I became the stubborn person I am today. Yes I have it and yes it can be annoying but in a weird way it makes me what I am. I don’t think I would be where I am today if it wasn’t for my asthma as it has made me more determined to achieve what I set out to achieve and beat it. I would also never have met a lot of the people I have met over the years both in person and through online websites like Asthma UK. I know my mum was very upset, especially when a couple of years after diagnosis I spent a lot of time in hospital and in intensive care when I should have been out enjoying student life. I have since found out that she in some way felt responsible and blamed herself as it is a mum’s job to protect their child and this was out of her control. My friends were supportive at first and came to vsit me in hospital but as time went on Steph being in hospital became the norm and they didn’t bother. It was interesting as the year after I first had problems (in September 2006) I left home and moved 100 miles away to university. My uni friends never knew anyone other than the Steph with asthma. I was lucky in that when I was at uni I made 2 very close friends who were more than happy to come to hospital with me. One studied nursing and the other physiotherapy so the A & E staff at the local hospital use to refer to us as the nurse, the physio and the patient.
Many people look at chronic diseases such as asthma with such negativity but has having asthma brought any positives to your life or changed the way you view your life?
Definitely, as I alluded to before, it has made me more determined. I refuse to be beaten by it. When I was first diagnosed, I went to chat forums and facebook groups looking for support especially from other young people and you are right a lot of it is negative with some sort of competition of who can be more ill. I don’t understand it. You have to live with what you have got and be thankful for the good days. I have found some very close friends as a result of the diagnosis, for instance I would not be writing this if it wasn’t for it.
You have had experience of different healthcare systems from being abroad- do you think one is better than the other and did the treatment differ either positively or negatively?
As you say in September 2008, when my chest was at its worse, I went to New Zealand for 10 months as part of my degree course. I literally turned up with a suitcase full of meds, syringes, needles and sub-cut insertion sets with about 5 pairs of spare underwear! New Zealand has a healthcare system where hospital admissions and appointments are free but you have to pay for GP care (about £12.50 per visit) and ambulance trips. Having said that, the ambulance service was run by St John (like here) as a charity and if you became a supporter of them for the equivalent of £17 per year you were entitled to free ambulance trips anywhere in the country. I never realised you had to pay for ambulances until I received a bill for £25 after a trip from the GP to A & E. I guess it is just something I have always taken for granted. Perscriptions were much cheaper £2.50 per item but then they only allowed 3 repeats before you had to pay for another GP appointment.
I think the internet made my trip easier as my chest consultant here wrote to someone at the local hospital before I arrived. Most of the medical team were English anyway. Some of my meds had to be changed because they were not manufactured in NZ and sub cut bricanyl was from another planet! I was first admitted to hospital about 5 days after I arrived as I picked up a cold on the plane. The staff were lovely but I was very upset as I had to be quarantined and barrier nursed as they were terrified of me bringing MRSA into the country. However once the swabs came back as negative I was allowed onto the ward. Hospital staff definitely had fewer patients to look after so more time to care. The city I was in also had a respiratory psychologist. My consultant up at the North West Lung Centre had always talked about referring me to one to talk about the anger / frustration side of my asthma but it had never been feasible as I lived in Birmingham at the time. That was very helpful and something I believe there should be more of in the UK.
Have you always been compliant with asthma medication? It’s a big issue with young people not complying. If you have ever not complied why and what happened to make you change?
I have to say 99 % of the time I have been. When I was firdt diagnosed I was in hospital enough when I was complying that the thought of not doing so didn’t cross my mind. Since having bronchial thermoplasty 3 years ago my chest and quality of life have improved dramatically. Now and again I don’t comply but that is generally when the GP thinks I should start or increase my prednisolone and I don’t agree. My GP aires very much on the side of caution so I tend to bypass them now and talk to the chest team at the hospital directly.
Sadly we know someone that has died of asthma- has this changed your view of your own asthma and how you live your life?
It always makes me stop and think twice. Too many people do not recognise / acknowledge the seriousness of asthma. I think because now it is just part of me and people around me are very blasé that it always comes as a shock when you hear about people dying.
Everyone wants a cure for asthma but is this and should it be the top priority in asthma research??
I don’t know. I mean a cure would be brilliant but I think it is unachievable as there are so many levels / types of asthma. Personally, I think it is best to use what money there is in to something that can be achieved but has equally as big an impact. The stop asthma deaths campaign is one way of doing this. Having said that, I was lucky enough to have a treatment called bronchial thermoplasty three years ago which came as a result of recent asthma research and for me was funded by the lst remaining bit of a research grant. That has completely changed my life and dramatically reduced the number of admissions I have had allowing me to complete a PhD. It was interesting to be part of it especially because my career is in science research so I saw it from the other side.
Patients and the public should always be the focus of academic research do you think if we as asthmatics were incorporated more in the research process there would be more understanding about what the actual needs are of asthmatics rather than a researchers perceived perception?
Yes because what we see and what they see are not the same. Patients and researchers have different priorities and if they do not agree at all then the research is a waste of time.
Do you have any parting words of wisdom or advice to offer to anyone who feels that having asthma is just the end of the world and its all doom and gloom?
I genuinely believe my stroppy lungs have made me the person I am today. I did well at my degree because I had time on my hands when I was in hospital all the time to study. It has made me more determined to beat it and succeed. If I can do this, anyone can as I am nothing special. You just have to try and take a positive attitude, which is difficult at times. I always tell myself it could be worse. I have met some great people as a result of asthma and made some good friends. As much as possible you just have to take it in your stride and multitasking with a neb in your mouth because you are running late just becomes a normal routine!
Last one! What is your greatest achievement?
That is hard. I think there are a few which are all related as my asthma could have stopped me so many times but going to live in New Zealand for 10 months, getting a first in my degree and then doing a PhD are all up there. The other one is completing my Gold level Duke of Edinburugh Award. I had to do the expedition part 3 times before I finally completed it and at one point had a trip in an air ambulance but as I say never give up. There is always a funny story to tell.