CT scans, disappointing results & pulmonary rehab

[dodgylungrunner]

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.

[Bkin]

Hi DLR

I understand how frustrating it can be getting down to the nitty gritty with consultants, they seem bent on not revealing the entire story.

What I always do now is get copies of my test results, even though this can be a task in itself. I had to put pen to paper to get mine in the end, saying I have on several occasions requested copies of my test results both from the consultant and from my GP and have found this increasingly difficult therefore I am writing to reassure you that I do wish to have copies of my test results, could they please arrange for them to be sent to me.

Another thing you can do is request on line access to your medical records so that you can view blood test results as well as request repeat prescription and book or cancel appointments at your GP surgery.

Although some people do prefer just that their doctor or consultant communicate results without copies of the actual test results.

I have found with my own consultant, is he likes to focus on improvement and will discuss that but the test results may not show improvements in all areas and for some patients they may not want to know this, so in this case best just to try and get the info from the horses mouth.

BLF have pages on getting the most from your appointments but don't hesitate to contact the helpline for further advice.

Best wishes to you.

Hope you find the results are not as you feared.

Wishing you good health for 2018

[Bkin]

Its great you got a good boost with the PR physio so pleased

[skischool]

Andy,you are once again to be applauded for your positive and realistic outlook on life given the seriousness of your Ipf diagnosis.I am rather surprised that your consultants registrar was so unhelpful given that you are a patient of a hospital with such a good reputation for treating respiratory conditions.Hopefully you may be able to contact his secretary to arrange an appointment to discuss the scans.My wife had Ipf and significant information can be gained from current CT scans with regard to fibrosis intensity and it,s potential progression.

Your current regime of gym work outs,the PR course and taking advise from professionals can not really be improved upon.Good luck and maintained health in the future young man........skis and scruffy

[Caspiana]

Hello dodgylungrunner .

Have they ever mentioned transplant? Or are you already in the list? How much has your FEV1 fluctuated over the course of a year?

I know it's frustrating. Lung issues seem to be very hard to assess. I am sorry you didn't get the answers you were looking for. But so glad you are benefiting from the PR sessions. And well done with your gym regime.

Have a good week.

Cas xx 🙋🐕