It has taken me a couple of days to get over this appointment, as it just did not go as I wanted at all. Firstly, I went on my own, I had lost a lot of my confidence in actually going anywhere without my daughter but she was working, so I had to do it alone. And, I did it very well and enjoyed the day out. I was mostly worried about all the walking that would be involved because the car park is quite a long way from the front door and once inside, there is loads of walking to do. I surprised myself and managed quite well with the walking. It was about 400+ metres from the car park to the x ray department and I stopped a number of times but absolutely loved the fresh air it was quite windy and the blow did me the world of good. Negotiating the centre of Leeds was also worrying me, I hate driving in Leeds its so busy and I was travelling at rush hour. I managed to p*** off a few drivers and got honked at a few times but overall did quite well.
I had my x ray first and then walked back to the Thoracic Surgery Department to see my consultant. By the time I had sat down in the waiting room, it was not long before I was called to see him and I must admit after all that walking I felt so much better, I almost ran in. However, I didn’t run out, after talking to him for about 10 minutes (a very short time really), I became under the impression that he really was not comfortable about doing endobronchial valves, he didn’t seem to have a lot of success with them. He made up loads of excuses, the first one was my heart.
I have got a stupid arrhythmia the cardiologist said it is not dangerous and should right itself as it usually does. I have had it for years (palpitations); ever since my son had an accident and fell 25 foot through a roof and was in ICU in Leeds. It normally puts itself back to normal but the last time I had to go into hospital for 4 days so they could get it under control. Now, I am on tablets for a short while and have to have a cardiogram next week just to check everything is fine, so I am crossing my fingers that it is. So, obviously the first thing the consultant talked about was this heart thing and said it needed to be sorted before he could consider the valves. I told him that I had mentioned it to my cardiologist and he had declared me good to go for an operation. Anyway, he wasn’t having any of that at all and moved on to his next objection which was the fact that I wasn’t on oxygen so was not an urgent case. Actually, I found his bedside manner terrible, I was beginning to wonder if his wife had given him a poor breakfast or had a row or something before he came to work. The next objection to the valves was the fact that they don’t work for everyone and he didn’t have very much success with them, he also stated that they only lasted for 3 years anyway! He said you will get worse anyway I can’t make you better! Oh blooming heck, I knew this already did he think I was stupid or something. I just want a little bit of lung function back, I was hoping the operation might turn back time a bit for me; and enable me to do lots of exercise and allow me to go on an upward spiral instead of the downward spiral that I am in at the moment. I must admit I started to cry with frustration because, I know that they last longer than 3 years in the US they stated 10 years but even if you half that for optimism that is 5 years. I just felt that he did not want to do it! He said I needed to do another Pulmonary Rehab Course, I told him that I did a lot of exercise at home anyway and was active. But he said I needed to do a full course which I am happy to do anyway and he also said I had to do a 6 minute walk test. When I asked him what he would learn from that test he didn’t give me a real answer. Just mumbled something I couldn’t understand. I hate this about some doctors they just don’t explain themselves; but I can remember being guilty of this when I first started teaching. People, need very simple explanations in order to follow unfamiliar subjects. Drawings and diagrams are preferable!
And this is what I like to hear from Doctors someone being positive –
Anyway, the interview ended with me walking out of the room very disappointed and bemused and wondering exactly what had taken place. He definitely was not working on the same page as me. Since I have had time to think about his response, I feel that I need to search for a consultant who has more experience and success with fitting these valves like the guy in the video. That is something I had not thought of before. Its the same as anything, if you were going to have a new conservatory built you would ask about and choose the best builder; but we regularly hand our health over to Drs, Consultants, Specialists who we have no knowledge of at all. We trust that they are the fountain of knowledge and fantastic at their job. Well, I think I will have to think seriously who I trust with what’s left of my lungs, I can’t afford to waste any more. And this experience has in no way deterred me in my mission to find ways to improve my life, I just need to look elsewhere! The fight is not over!!! Look out for next episode.