By John Beverton
My GP changed my life by recognising early that I was not well and referred me to my consultant at UCLH. I can clearly recall being told I had pulmonary fibrosis (IPF) and what it was. It wasn’t a heart stopping moment as I had no clear idea of what it meant for me as a person, so I went home and looked it up in Wikipedia. That was a shock as it said I was likely to die in two years (not everything in Wikipedia is true). I was still working at that time in a health care setting and some of my colleagues found this news difficult as they had first hand experience of working with the disease; fortunately, they did not share this with me. My employers were good and let me travel by taxi and allow extra time to make journeys. I took early retirement rather than restructure again and the experience of leaving a job and people that had been a major part of my life was an added wrench.
What do you do then?
To start with, my illness consumed much of my time: hospitals, doctors and clinics. I was referred to the pulmonary rehab group which was lovely and I stayed on longer than perhaps I should have done (Thank you Giselle). Exercise helped keep me as fit as I could be and I started to try and walk through as many of London’s parks as I could which was a really positive experience introducing me to areas of London I had never seen, including the magic of finding a disused Victorian tennis court in Crescent Wood, Sydenham. Having a travel pass really helped with this.
I arranged to see a psychologist attached to the pulmonary medicine service, something that I found to be very useful as it gave me time apart to look at the areas of concern in my life at that time: 6 sessions to talk about my reduced future expectations and where I was with this. That was enough to enable me to think through the issues.
I joined a pulmonary exercise class and found the mutual support of the people there to be as beneficial as the exercise. I would recommend these classes. It gets you out; you meet people and do gentle exercise. I did do a high impact class and apart from developing a limp could not recommend it.
Saying goodbye or not
Having just left work, this was something that was on my mind. If you have a disease like IPF, it is tempting to look on the darker side of what is possible. For me, this would have been a huge error and I would have missed some valuable experiences. If you tell friends goodbye, it is a huge emotional wrench for them as well as you. You will then find yourself wilfully surviving, having told people you were off. I found it was best to avoid this by finding opportunity to tell people how much I enjoyed being with them. It is surprising how little we do this and how good the effect is. Don’t say “it’s been great” say instead “it is great”.
For family it is different. I have a very supportive family and it was important for them and me to discuss the reality of IPF and having done this not to go back over the ground, but to maintain, as far as possible, a positive frame of mind. I felt I had a responsibility to my family to do this. That does not mean in the small hours of the night I was immune to fear but, by looking for positives, for example losing two stone and being able to breathe more easily, helped me and those around me to have good times.
To my surprise, I learned to live with a reduced life expectancy, it became part of me and my experience and lost, for me, the power to frighten. It became just one facet of how I experienced life. There is, on the part of some, a feeling that you should become depressed. I did not really find this to be the case except when having to talk about my prognosis to medical staff, in particular when you need to discuss how you are slowly losing function. I felt it was reasonable to show some emotion and Doctors and Nurses were very supportive and more than willing to listen. I was very lucky to have found a great GP who would see me outside of clinic hours so I ran less risk of infection and a super consultant who offered me considerable support. Even UCLH did their bit by constantly moving the location of the clinic so I got plenty of exercise trying to find it.
One question that did arise for me was the question of legacy. What, if anything, do you leave behind if it all goes badly. I was lucky in that I could point to housing for disabled people and more importantly to services that were better than when I started. I could also look at my family and find comfort and solace there. All in all, it was pretty solid and I am grateful for that.
There is no known cause for IPF except that it may be linked to gastric reflux, there is also no real answer apart from a lung transplant at present. To get referred for a transplant was a major stepping stone, as was adopting a better lifestyle, losing weight and getting fitter.
One of the surprising problems was getting too much choice in making decisions. Do you want to join any research programmes? Yes of course I did. Do you want lungs that have been cleaned up if needed; well OK. The reality is I was completely dependent on the medical team to guide my choices. It comes down to trust. I have never chosen a set of lungs before, wouldn’t know a good set if I could see them, the transplant team have, so I said, “Please let me know when you find a set”.
The transplant interview is a fairly fearsome process designed, I think, to discourage those who are not sure this is what they want to do. I was sure and keen to go ahead although some of the information is scary. Survival for 10 years is the 50:50 point, I hope I will be content if I achieve this.
Having been accepted onto the programme, you learn to wait. This gives time consider what will happen if the transplant does not happen, after all you are waiting for a donor and these are rare. Carrying a donor card myself, I would encourage everyone to do this as you never know when you might be in the position to save another life.
My call came in the middle of the night just when I had come to terms with the reality that it might not come at all. Be prepared, have a will done, a bag packed, say something positive to those around you. For me, consciousness began to return after 6 weeks of intensive care, gruelling and scary for those around you and not easy to endure as you may not be as unconscious as others think. The dreams that come are not always pleasant. This however is the exception not the rule, others were in and out before I came round!
After the transplant
For me, making the choice that these lungs were now mine was a critical one, don’t over think it. My muscles had wasted from all the time spent lying around and exercise was important to regain mobility and get some control back into my life. A further 6 weeks in hospital at Papworth passed before I could go home but, once I was home, my improvements continued and I am doing well, they say. I have new lungs and take medicines four times a day, dutifully recorded in a big blue book. To be honest, it is all a bonus and, while I have yet to recover fully, I want to make the most of the new time I have.
IPF makes you very aware of being mortal; transplantation reveals the gift of life and the simple miracle that it can be done at all.