Last Friday I had my latest check-up at the Brompton. I've had a lot of check-ups over the years for my leukaemia and I'm normally quite calm until the day before when I start to get really anxious about what I might find out.
However the appointment was playing more on my mind than previously as it would also involve a CT scan - my first since my diagnosis - which I feared would reveal more extensive scarring than either I or the treatment team would care to admit.
I geared myself up to be prepared for the all possible scenarios and in the end it was all for nothing as my normal consultant wasn't around to see me for the third appointment in succession and the registrar, lovely as he was, wasn't able or willing to give me any answers to any of the questions that I had coming in to the appointment.
I left none the wiser of where my lungs are at and now face the dreaded wait for a letter from the registrar to find out my fate although the lung test results would indicate that there has been a drop. I've known for some time that the disease is progressive and that it would never get better but part of me was (and remains) hopeful that we can halt further progress. Hopefully the CT will reveal that while further scarring has occurred it will be towards the lower end of estimates.
I appreciate that the nature of IPPFE or any other form of IPF/ILD is different for everyone and that doctors can't give you definitive answers about progression. However I've found the battle for clear answers incredibly frustrating and would really appreciate some more straight talking, especially from my consultants.
Every time I've been to-date I've been told that my condition is stable and that my lung function results are within 10% of the previous result. Yet if you compare the results over the course of a year the trajectory is only heading in one direction and that's not a positive one. Yes, I may well be in-line with where they expect me to be with my treatment plan but I'm anything but 'stable' and I wish they'd explain it to me as such.
I've also tried talking to my consultant several times over the past 4 years about contingencies for future intervention and treatment but never had much joy and was wondering whether others had suffered similar and felt in a similar state of limbo?
I find I often leave appointments feeling frustrated, alone and more confused than when I went in and that can't be right!
However, it's not been all doom and gloom this week as today I attended my first pulmonary rehabilitation pyhsio session which was absolutely fantastic! The physio sat me down and talked to me at length about my condition and how I was feeling and provided me with some really brilliant tips on how to self-manage my condition.
Exercise is the key to slowing down my lung disease and it turns out that I've been doing a lot of the right things already with my visits to the gym which is a great starting point! A course of pulmonary rehabilitation sessions twice a week at the hospital is usually recommended. However as I remain 'high functioning' for now the physio suggested that it would be better for me to continue going to the gym and helped me tweak my routine to make it of maximum benefit.
She also taught me a really good breathing technique to help me to produce mucus when I get chest infections as well as some really good tips about water intake (6-8 glasses a day recommended) and the benefit of wearing scarves and snoods in the cold air.
In contrast to my appointment with my treatment team I left feeling listened to and more positive about everything going forwards with a clear plan of action on what to do next.
I cannot recommend pulmonary rehabilitation enough if you haven't tried it already. Sadly it's not routinely available and you might have to ask your consultants about it to get a referral but certainly it's something to consider.
Last and by no means least I'd like to thank the British Lung Foundation who made me aware of pulmonary rehabilitation and all the incredible support and services that are available to me which I previously had no idea existed.