Investing for your future.
“An ounce of prevention is worth a pound of cure”. Benjamin Franklin’s famous quote dates back to 1736, and at the time, referred to fire safety issues in Philadelphia where lit coals being carried up and down wooden staircases often meant that seemingly harmless scraps of fire later led to far more disastrous outcomes.
Clearly, preventing fires is better than fighting them and unsurprisingly, the same goes when the fight in question is one of chronic illness, infectious disease and managing the associated symptoms.
Whilst CF is an intricate and varied condition that affects patients in many different ways, as overwhelmed parents start to come to terms with a CF diagnosis, there is a consistent foundation of best practice on which all advice sits. As well as managing weight and encouraging exercise, treatment compliance is considered the number one priority.
There will never be a better time to invest in your health than right now, and just like contributing small but regular savings into a bank account, the sooner we commit ourselves to treatment compliance and embed it as a habit, the bigger our potential return on that investment in the future.
The thing is, whilst the idea of prioritising health seems obvious, in my experience as a person born with Cystic Fibrosis, it’s not easy, because along the way life will always attempt to get in the way of any amount of good intentions.
The battle begins early on and persists throughout life. As a child, you don't think beyond right now. You don't dwell on or remember too much about yesterday, or what might come tomorrow and so the idea of investing today, for a benefit that may or may not come way into the future, is a hard sell for any parent.
The ‘investment’ we are asked to make day after day represents our most precious commodity: ‘time’. It’s a precarious balancing act, one that asks us to consider the amount of time we are comfortable giving up today, to potentially earn more time back in the future.
The return itself may come in the form of fewer hospitalisations, fewer interventions thanks to healthier lungs, or optimistically, it may even lead to a longer life. However, this is CF and it's impossible to quantify the benefit, so as with all investing your ‘capital is at risk’. If we’ve learnt anything about CF over the years, there are no guarantees so we have to put our faith in the process and do everything we can to set ourselves up for success.
For those lucky enough to be enjoying the benefits of CFTR modulator therapies, the balancing act is arguably just as difficult to navigate. For those showing positive results, thanks to such a dramatic increase in health in such a short period of time, it’s easy to see this as the time to cash in the return and cease further investment. In my experience, my lungs are much clearer, the CF cough I’ve known my entire life has faded, my appetite is great and so is weight management and exercise has never felt so easy.
But having said this, for me, the key is in the word ‘balance’ and rather than considering whether to continue our other daily treatments or not, perhaps an approach that sits in between the two extremes is better; a ‘maintenance process’ that can flex in either direction in line with how we feel, medical recommendations and data.
The role of non-modulator CF therapies and why, for now, they're here to stay.
There are no right or wrong answers for our outlook on traditional CF treatments, and the role they play in parallel to CFTR modulator therapies is a personal thing, but here’s why I think for now, they're here to stay.
The future isn't written yet (so make it a good one!)
At the time of writing this, the latest CFTR modulator triple therapy has been in patients’ hands for a very short period of time, in the UK it’s less than a year and we have no idea what the potential long-term implications are yet.
For many of us, we've spent far more of our lives fighting CF without modulators and as a result, have suffered permanent lung damage that these drugs can’t fix. Remaining consistent with our existing treatments is therefore a great way to do our best to preserve areas of our lungs that are as yet undamaged.
The cost to invest has fallen!
I used to spend hours, sometimes 6 hours every day on treatments and it felt like I was giving away far too much of my precious time to CF.
With CFTR modulator therapies, however, the ‘cost’ has fallen significantly and my mindset towards traditional treatments has shifted. Rather than hating the thought of getting through them, I now consider my daily treatments as a simple ‘check’ to ensure my lungs are good to go. It takes very little time to run a check and it comes with the added benefit of peace of mind and the confidence that I’m in control of my health, rather than being in the dark by simply assuming things are okay.
Unfortunately, CFTR modulator therapies are not a cure for CF
We still have CF, we are not immune from bugs and infections and our daily treatments are just as important as ever when it comes to putting us in the best position to fight them.
When the most recent modulators first came to market in 2020, many of us spent the next year or so in isolation. We weren’t on busy trains, buses, in classes or crowded offices. We weren’t fighting our way down supermarket aisles and in shops and we weren’t on cramped aeroplanes jetting off for a summer break abroad. Therefore, it’s perhaps not surprising that so many of us experienced a health improvement, with help from new drugs and being hidden from bugs.
Where some CFers have since experienced a decline in health now that they are integrated back into society, if CF treatment compliance has fallen too, then it makes sense to address this no matter how painful that might initially feel.
Have we reached our potential?
How do we know if we have reached our potential with CFTR modulators if we don’t continue to push our lungs with daily treatments? What if there are a few extra percentages locked away? Daily treatments might be the key to unlocking further potential that might surprise you and your CF team even more!
Compound Interest!
Even with CFTR modulators sitting at the heart of our strategy for managing CF, the reality is that many CFers are still relying on IV interventions. This tells us that CFTR modulators alone aren't necessarily enough to fight off infection.
Using IVs as an example: Whilst not a guarantee, a simple daily check stands us in a better chance of needing fewer IVs over time. Fewer IVs could lead to fewer vascular issues. Fewer vascular issues might prevent the need for a port-a-cath which could in turn mean fewer hospitalisations and other associated complications etc. and so on.
I was once told that regular IVs are a good thing. I would book up a year’s worth of IVs whether they were needed yet or not. IVs are a great backup plan until you run out of veins. Remember, preventing fires is better than fighting them.
Ultimately, a little time today could offer more time back in the future. And the benefits (or issues) can compound in either direction!
Staying on track with daily treatments.
1: Know your WHY:
Anchor your daily treatments to a strong WHY, something beyond the right here and now.
You can position your WHY in whatever way you like. For some, this might be about avoiding problems down the line:
I want to reduce/eliminate the need for IV antibiotics
I want to avoid hospital admissions
For others, it might be about creating a life you never expected:
I want to be well enough to fall pregnant, carry a child and become a mother
I want to be well enough to go through and graduate university
I want to train to complete a marathon or triathlon (or like me to paddle an ocean)
Whatever your WHY, anchor your daily CF treatments to it and make them a non-negotiable stepping stone.
Simon Sinek once famously wrote:
“When you’re motivated by WHY, success just happens”.
2: Set meaningful habits:
They say it takes an average of 66 days for a new behaviour to become automatic.
If you’ve fallen out of your treatment routine, try to recognise this early on and get back to it as soon as possible. If you constantly fall off track, use visual management to remind you - apps or progress charts that will think for you are a great way to stay on track.
If you lack motivation or find yourself forgetting, you can use ‘habit-stacking’ as an effective tool to help you succeed by attaching your treatments to the end of a habit that is already in place.
James Clear (Atomic Habits) describes habit stacking here:
You probably have very strong habits and connections that you take for granted each day. For example, your brain is probably very efficient at remembering to take a shower each morning or to brew your morning cup of coffee or to open the blinds when the sun rises … or thousands of other daily habits. You can take advantage of these strong connections to build new habits. How? When it comes to building new habits, you can use the connectedness of behavior to your advantage. One of the best ways to build a new habit is to identify a current habit you already do each day and then stack your new behavior on top. This is called habit stacking:
James suggests the following formula:
After/Before [CURRENT HABIT], I will [NEW HABIT].
Example: After I [pour my cup of coffee each morning], I will [do my DNASE nebuliser].
Habit stacking is a great way to embed a new habit, and if you can commit for around 66 days, you might find the following years fly by with treatments getting done on autopilot.
3: Share your WHY with others:
Tell those around you what you’re doing and why. Saying it out loud in front of others applies welcomed added pressure to help you stick to your goals and by asking others to do what they can to help you achieve your goal, you’ll be in a better position to stay on track.
Change your mindset from one of hating the reminders from parents and friends or partners to one that welcomes them with positivity. Use the support to constantly reconnect with your all-important WHY.
4: Build a process that works:
Sit down and figure out how you can improve the process of getting your treatments done each day. If your process is failing you, your treatments will take much longer than they should. That ‘waste’ within the process is eating up your precious time. A good process should contain no wasted time whatsoever.
Wasted time can come in many forms:
‘I can’t find my meds/treatments/tablets!’
‘I have run out of stock of [insert medication]!’
‘My [insert medication] has expired!’
‘My nebuliser isn’t clean!’
‘The battery has run out on my nebuliser!’
‘I can’t remember whether I have done that one today or not?!’
The other thing to say - again from experience - is that if you don’t concentrate, nebulisers and treatments will take longer.
Short, focused daily sessions are far more effective than long, drawn-out half-hearted sessions where concentration is lost.
I understand that everybody is different, but as an example:
I know that if I concentrate, I can do my nebs and airway clearance within 20 minutes. My process is effective, I’m switched on and engaged, and I benefit from consistency.
The more consistent I am every day, the less rubbish I have on my chest. The less rubbish I have on my chest, the less time required to shift it. The benefit compounds over time. These days my airway clearance is a ‘check’ for rubbish, rather than a clearing of rubbish and most days I find nothing.
So, ask yourself:
How and when do you order prescriptions?
How do you store your treatments and track usage and dates?
How do you remind yourself to do your treatments?
Can you always find everything you need when you need them?
What habits can you attach your treatments to?
What problems do you run into when getting treatments set up?
Do you concentrate to prevent treatments from taking longer than they should?
How often do you clean your nebulisers?
Are you tracking your compliance and consistency?
How can you make the process easier or more efficient?
Challenge your treatments processes, improve them and standardise them. This will help to embed healthy habits and reduce the time you spend thinking about, prepping and doing treatments, giving you more time for life.
Training not treatment, help not hindrance.
Over the last year, thanks to the internet I have been lucky enough to meet hundreds of CFers from around the world, all with unique and interesting CF stories but with a shared understanding of the pain associated with managing our health. The physical pain of simply getting through often exhausting and brutal daily treatments, but also the emotional pain of knowing that over time, CF asks more of us and the balance inevitably shifts closer to CF and further from life.
The work required to be consistent with CF treatments, I believe, creates a foundation of work ethic. CF trains you to work hard now, investing time today in the hope of a return on that investment way into the future, and that in itself is a lesson that can take others a lifetime to learn.
This mindset transfers seamlessly into many aspects of life: work, education, relationships and fitness for example. Giving up a slice of time one day after the next, striving for small but consistent progression and committing to the idea of self-improvement, just like the commitment to health and treatment compliance, slowly but surely leads to adaptation and transformation.
With or without CFTR modulator therapies, CF provides us with an important daily reminder that perseverance is key, a reminder that to live a remarkable life, it is vital that we believe in ourselves and that we commit to consistency regardless of fear, doubt or discomfort.
And for all the discomfort CF puts us through, in return it creates something far more powerful. Resilience. No one is resilient without struggle, and for me, CFers are some of the most resilient people I have ever met.
To me, the time I spend doing my daily treatments is no different to the time I give up each day keeping fit in the gym. I’m building resilience, purposely putting my body through that process in order to build a stronger version of myself that I may need to rely on in the future.
It's a weird relationship really, CFers and their treatments.
We start out in life hating every moment spent doing them, but the older we get, eventually we learn that life would be very different without them.
They constantly remind us that, for all the reasons I've talked about today, an ounce of prevention really is worth a pound of cure.
Written by Marc Cotterill:
Connect here: https://bio.site/marccotterill