There are certain times battling cystic fibrosis (CF) when I need to wave the white flag and strategically surrender for a while to re-group and come back fighting.
There are different layers of suffering and corresponding medication with CF. Outside of the daily medication slog of 40 pills, nebulisers, injections, physiotherapy etc, when my lungs are ravished enough I need to take my treatment to an extra dimension… and that means having two plus weeks of high dose intravenous (IV) antibiotics – what I call having my ‘MOT’. I had to wave my white flag five days ago and begin an IV…
In the past, when I socially lived for the moment with the appetite of a person who’s only been eating salad for a week, I did get very run down and my lungs were often in a horrible state of infection prior to the need for IV treatments. My mucous production and subsequent cough would get so bad that I became part human part cement mixer.
When I wave the white flag to initiate a course of treatment, I always feel like the duracell bunny, but minus a battery or two – I can get by my usual day but everything is at a reduced pace in mind as well as body. Tiredness eats at you and my body feels like it’s in freefall – imagine the way you feel when leading up to a break from work but times it by a 1000.
On the day my IV commences, when I’m driving to the hospital I would think of the film ‘Papillon’ featuring Steve McQueen and the iconic scene when Papillon is put in solitary confinement for trying to escape. When at a low ebb in his cell not helped by a less than balanced diet (cockroaches were his culinary delight), he would look to the Heavens via a small window in his cell and shout “I’m, still here!”
I FELT LIKE THAT, though I’d be shouting those words out of a car window instead of one with bars. I was enduring to survive CF and exceeding my life expectancy through my 20’s, into my 30’s and now at the milestone age of 40.
In my experience, IV antibiotics make such a difference because they help to clear my chest infection as the liquid medicine goes directly into my blood through an IV catheter. IV drugs churn up my mucous so that it can be coughed up more easily.
An IV may require a hospital stay, but can also be done at home, which is the route I prefer – splitting the time up between home in London and my folks’ house in Southampton.
I have calculated that this is my 60th IV session – that’s a lot of holes (and scars) on the inside of my arms! If you did a dot-to-dot with my scars, I reckon you could spell out ‘Intravenous’…
I’ve had so many of these that my veins have almost had enough and it takes a lot of effort, blood and swearing to get the lines in these days – that’s even before I start any medication.
I do count myself lucky as my veins have been kinder than most and I have staved off needing a portacath (small medical appliance that is installed beneath the skin).
Always there to remind me
Although there are more horrid medications for CF sufferers, I always explain to the non-CF community that these IV’s are my version of chemotherapy. They stretch me both physically and mentally – it’s extremely gruelling and feels like trench warfare.
Physically the power of the drugs wear me down. I feel lethargic and sapped of energy and spirit. An IV drug treatment can last over two hours (often three times a day) and are done on top of my usual medication regime; which makes for a long day where I go from one treatment to the next in a vicious circle.
There’s always a drama during each and every IV session – going back to blocked and leaking catheters in my teens to carrying my treatments to social engagements while at University. Last year it took the doctors most of the day to get the catheter successfully into the right part of my body. This time the drugs were delivered to the wrong house and my skin has reacted badly to the adhesive plaster covering the point of injection – causing an irritable rash which drove me to distraction.
As with the majority of my antibiotics, IV drugs have caused some horrific side-effects over the years. A snapshot includes fevers, hallucinations, stomach upsets and severe rashes. I once fainted and had to be fetched out of the bathtub by my Aunty Mary who was looking after me at the time.
Mentally, it’s a rollercoaster trying to remain as positive as possible even when things don’t seem to be going well or when my body sends me mixed messages on the effectiveness of the medication.
Psychologically, IV’s are a harsh reminder that CF is very much still calling the shots and affecting my health and fragility. It takes away any spontaneity and makes me feel like the ‘sick boy’ all over again. I find IV’s reign me back in, exclaiming: “Don’t get too comfortable, feel normal or get too ahead of yourself and feel like all those healthy people!”
Generally, patience is a huge virtue when handling CF and my recently diagnosed diabetes but it’s required in bucket loads during an IV session. I need to hold my nerve and stay the course of the medication so that my lungs can reap the full benefit from the drugs. Also, there’s often a lot of waiting around in hospitals for doctor appointments plus patience is needed during the frustrating down time of the treatments themselves. I try to get myself into a ‘Zen’ like state of calm to manage this whole process.
Historically, I’m not always a nice person to be around during IV’s – I’m prone to being grumpy, incoherent and forgetful of the simplest words. Katie and I joke that I once couldn’t remember the term ‘seat belt’ referring to it as a ‘driving strap’. If I forget your name or something I should know when I’m on IV’s, please don’t take it personally but blame it on the drugs!
If you know someone with CF who’s on a course of IV’s, try to be understanding if they are down or complain more than usual – it’s pretty damn awful!
If anyone can manufacture a pill that has the same effect as IV drugs, they would be bought dinner for the rest of their lives by appreciative CF sufferers!
I would certainly have struggled dealing with these IV sessions if it were not for the amazing and consistent support from my parents, brothers, Katie and friends who share the burden with me. My mum has particularly gone the extra mile and been involved with all 60 IV’s through thick and thin, blood and gore, tantrums and agony, but also through humour and laughter which is our overriding medicine.
On a positive spin, these sessions have given me time with my family that my normal busy life in London wouldn’t offer me. Once you leave home, these ‘quality’ times are few and far between. Despite the fact that I’m often higher than a kite, I will remember these times with some fondness.
I can’t deny that it’s an almighty faff taking time out from work, sport, family-life and not being able to be there for Katie and Felix. It’s not normal, is always inconvenient and conflicts with work and social commitments. Luckily, I have the support of an understanding employer in The Fifth Business, who grant me this time off with open compassion.
To the end
As well as making a step change in how I view my longevity in this world, I have also matured in my approach to handling these IV courses. When my social life was all important, the IV’s would hold me back and I used to get straight back onto the hockey field and bar as soon as they had finished – usually in the same day! I would often then go hell for leather and burn myself out far too quickly…
But with most things in life, I have found a way that works for me – a more measured and realistic approach where I listen to how my body feels before, during and after the IV course and act accordingly.
Once an IV course is completed, it feels quite euphoric despite being extra tired for a couple of weeks as a result of the debilitating drugs. Only those people who have had to suffer such medication and time away from their normal lives will fully appreciate how it feels to get your life back on track – it’s probably one of the purest highs I ever feel!
By commencing my 60th IV session, I kick-started this whole mental and physical shake-up, but I always try so very hard to keep my eye on the end goal and project myself post treatment – working hard, playing hockey, going for jogs, enjoying a night out with my chums, taking Katie for dinner and playing rough-and-tumble with Felix.
By realising when the time is right to change my treatment, I temporarily wave the white flag so that I can live to fight another day – I may have lost the battle but I’ve not lost the war…
This blog post is dedicated to my mum and dad who have been through so much keeping me well over 40 years AND to my wife, Katie, who looks after our son Felix on her own when I’m away having IV’s.
I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign up if you have not already done so.
Yours cup half full
* Cystic Fibrosis is one of theUK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations.
For more information and to find out more view the CF Trust Website