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Having PF at a younger age
Hi everyone
Having been diagnosed with hypersensitivity pneumonitis back in 2015, but fairly recently only been given my diagnosis of progressive fibrosing interstitial lung disease (chronic HP) I just wanted to reach out and ask how others of perhaps a younger age have found the journey they have been on and are going through. Has it been hard, difficult, frustrating or has your experience been good.
I am a young 54 year old, have always looked after my health and have served in the military and prison service which have both required a level of robustness and mental strength in order to do the job at hand.I currently still work for the prison service but after 24 years service will be starting the ill health retirement process soon as I am just not physically able to cope despite my mind telling me too hang in there.
My diagnosis came as a shock really, yes I had been feeling unwell and likely had struggled on well past when I should have stopped and recognised the signs but I guess the daily struggles of work, earning my pay and home life didn’t leave a lot of time for worrying about my deteriorating health.
I live in Scotland and am under the care of the NHS and although I often have the odd grump about things, I have found my treatment to be largely positive with just a few bumps along the road.
I am on OFEV (nintedanib) and require the use of an oxygen concentrator whilst out walking.
I guess what I have found so hard is everything in the UK seems geared up to the older patient and I have at times struggled to believe that my consultant understands the difficulty of being a 54 year old PF sufferer and how to effectively talk to me.I asked her once how many younger patients she had and she replied not many, most of my patients are already retired and in later life.
I found that my consultant really didn’t know how to engage fully with me or find it easy to link my conditions symptoms and prognosis to how I was experiencing life and the difficulties and worries I was and am having. Worries such as thinking about giving up work, finances, pensions was really just skirted around when it was obvious that these massive changes in my life were having a stressful impact on my wellbeing….it’s not easy for someone of my age to have too think about a whole new way of living when everything I had worked for up to now was geared to having a good retirement with my wife…..in good health preferably. Obviously being married means any impact on me is felt keenly by her too which is also difficult to come too terms with without feeling guilty.
from really simple things like the various PF help organisations generally using images of the more mature patient, too pulmonary rehabilitation groups not being geared up fully to incorporate someone of my age, mobility and still fairly good health (other than PF) into their classes (I was once asked to come along to a group and it was explained to me that the exercises would involve lifting weights the equivalent of a tin of soup!….now don’t get me wrong, perhaps that is sufficient for some people, but it wasn’t for me and I struggled to accept my attendance at such classes.I also live in a fairly rural area with few options open to me as a PF sufferer.
I have also started too attend a PF support group and everyone is lovely, kind and supportive….but again older with different needs and worries to me.
I could go on but just wanted to maybe hear from others who might feel like I do that there could be more work to do in how the medical and professional field / support network see and deal with the younger patient. As we are all starting this journey we are on at different times in our lives I understand that we all have our own issues and worries but I find that the help available is geared towards the older patient who may have a completely different set of priorities and outlook to myself.
Apologies for the length of this post, it seemed shorter in my head when I was thinking about posting than the reality lol.
Thanks for reading and having gotten this far!
my best wishes to all, whether 20 or 100 years old.We are all on this rollercoaster of a ride together and I am glad that this forum has so many supportive and knowledgeable individuals willing to share their own experiences in order to help others.
Scott
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