Archives: Lung Function

Ups and downs are par for the course in life, and we all learn to live with our own particular roller-coasters and merry-go-rounds.

Right now, I’m in a pretty substantial dip, enclosed as I am in my hospital room with what appears to be very little day-to-day improvement or sign of change.

I’ve been in just under a week now and, while I do feel better than I did when I was admitted, I don’t feel like I’m somewhere the docs might describe as “better”.

What’s become worse over the last few days is my intense focus on my transplant and when it’s going to come.

For the last 20-odd months, I’ve lived with the ever-present likelihood of that crucial phone call at any time of the day or night, but it’s always been something which I’ve lived with in the background and not paid much heed to.

Now things are looking less rosey, and with landmark moments being missed and life being put on hold, the urgency has been brought to the fore and the once-in-a-while thoughts have turned to a daily dwelling.

What upsets me most about things at the moment, though, is how much this borderline obsession is changing me as a person.

Not only do I feel more negative than I have for a while – finding myself struggling to see the fun side of life or consider anything that might be conceived as residing in the “future” – but I’ve also developed what can only be described as a jealousy towards others.

One of my closest “net-friends”, with whom i’ve shared many of the bizarre, amusing, surreal and downright scary moments of the transplant process, has been granted the gift of life which had so long eluded her.

But rather than finding myself eagerly awaiting news of the new joys she’s discovering every day, I can’t bring myself to catch up on things because I am constantly hit by a wave of “what about me” feelings.

I don’t recognise this as a trait in myself – it’s just not me. I’m not a jealous person and i’ve always delighted in the triumphs of my friends, family and all those around me.

So why the change now? What is it about my life at the moment that has brought out parts of myself that I never knew I had?

They say you learn a lot about yourself in adversity and “they” are often right. But how much of my current mood and outlooked is a deep-rooted personality defect that’s been dormant for years and how much is it merely distorted through the prism of life-threatening illness and the hope of salvation?

I honestly don’t believe I’ve changed as a person, nor do I think that my current health-hurdles are insurmountable. Similarly, I don’t expect my run of negative thinking to go on forever, but see it merely as a darker period brought on by hospitalisation – an effect I’m all too aware of from past admissions (both recent and historic).

The trouble with lung damage and infection is that it’s incredibly hard to know when you can reasonably expect to regain your lost lung function after a bout of infection and when you have to accept that you’ve waved goodbye to the portion of lung for good.

Clearly, the lower the function in the first place, the less there is room for movement either way. So when lung function drops, it’s hard to keep the fatalistic wolf from the door – both physically and mentally.

I’m not giving up yet, though. I’ve been through tough times before and although I’ve never considered myself quite as close to kicking it as I have this time, I’m confident that I can get past it.

This is largely thanks to my ever honest and sensitive team at Oxford who know what goes through my head and aren’t afraid to tackle the issues – and fears – as they come up.

I may not be able to bring myself to stay fully abreast of a good friend’s post-transplant progress, but I can still remind myself how often things looked bleak before the big day arrived.

Everything comes to he who waits, and while my new lungs may be the longest-settling pint of Guiness in history, I’m sure I’ll soon be frustrating someone in my position with my tales of new wonder in my life.

Amid all the hullabaloo (gotta love that word – never thought I’d use it here!) surrounding L4L, I have actually been looking after myself, too, you’ll be pleased to hear.

In fact, I was booked for a check-up at clinic today.  I popped along, with K in tow for waiting-room entertainment, and saw all the necessaaries, who all seemed to be buzzing about my appearance on Radio 4 and/or the upcoming gig.  It was almost like a taste of celebrity…

But most importantly, things went really well.  Off to a cracking start when I weighted in at 52.6kg – the heaviest I think I’ve ever been at clinic.  According to my notes I’ve put on a kilo and a half in a month – pretty good going!  Especially considering a week of that was spent in hospital, where eating enough calories in a day is more like a carefully managed game of skill than a diet-plan.

While I was up there, since I was due to start back on my TOBI neb (a nebulised form of the antibiotic Tobramycin), I asked them to do a check on my lung-function before and after, as the last couple of months I’ve had of TOBI (it’s taken on a month-on, month-off basis) I’ve noticed my chest getting tight after a dose and I wanted to check it out.

Sure enough, my before and after L-F showed a drop from 0.7/1.4 to 0.6/1.3, which doesn’t appear overly significant, until you work out that actually what shows up as a 0.1litre change on paper calculates to a 14% drop in the “real world”.  And I challenge anyone to lose nearly a 7th of thier lung capacity and not notice.

So after a quick conflab, the powers that be (that’s my CF nurse and Doc B) sent an order to pop me on a ventolin neb to see if it would relax my airways back from the TOBI.

I haven’t taken ventolin in years, and even then it was only as an inhalor, not nebulised, so I don’t have a great deal of experience with it and didn’t know what to expect.

What I didn’t expect – at all – was to find that after a single 2.5mg dose, my L-F jumped to an eye-watering 0.9/1.6 – a scale I’ve not reached in over a year!

To say I was happy is to do understatment a disservice – it’s unbelieveable that a quick 2 minute neb can make such a difference to my breathing.  But more than just the numbers on the page, I really noticed it in my freedom and ability to breathe and walk and just generally not feel breathless.

In  fact, there’s a good story that will show you how good it was.  When I got up to leave the ward after the trial, I switched from the hospital-plugged oxygen supply back to my walkabout tank and wandered up the corridor to Pharmacy, from where I then walked back to the car with K, had a 5 minute telephone conversation, walked back to pharmacy, returned to the car and then popped quickly back inside for a pit-stop before we left.

When I finally got back to the car and switched to my “driving cylinder” (long story), I discovered that I’d forgotten to turn my walkabout cylinder on when I left the ward.  So I’d spent the best part of 45 minutes walking up and down and all over without once noticing a shortness of breathe and questioning my oxygen supply.  What’s more, I actually remember noting to myself how I seemed to be walking faster than I normally would without noticing any adverse effects.

You don’t get much better than that.   Consider me not only well chuffed with my day’s activities, but on a personal high both physically and mentally.  Things have a way of turning themselves on their head – it only takes a bit of positivity and something to add a bit of meaning and purpose to your life.

So the New Year has started proper now, hasn’t it?  First day back at work notched up and I’m relishing the challenges ahead.

It was awesome to be back at the Theatre and to see the group again.  The majority of the girls are still the same people I’ve been working with for a while now and it was like slipping back into a comfortable pair of shoes, or a freshly made bed, or something similarly warm, comfortable and welcoming.

The guys I did know seemed so happy to see me that it really lifted my spirits and the ones who I didn’t didn’t seem to think of me as too much of a freak, which was good.

I have to confess, I was feeling pretty nervous ahead of time – it’s been over 6 months since I last properly set foot inside the Theatre and whilst it’s full of familiar and friendly faces, I couldn’t escape the fact that for me, a lot has changed since I was last there.

Striding in with my oxygen cylinder (OK, strolling), I tried to embody the kind of confidence with which I normally arrived at the building, but I found it a lot harder to muster my usual sense of artistic bravado.  Somehow the oxygen makes me feel weaker, and more self-conscious, and at the same time I know that it’s only my attitude which is creating that impression.

As much as people tell me that no one notices the O2, I know that it’s not true.  It may not be as big a deal to other people as it is to me, but it’s also nonsense to pretend it’s invisible.  My hang-up about looking “ill” came back with a vengence and seems to be staying firmly put for the time being, although I’m trying hard to learn to ignore it.

I didn’t wear my O2 all the way through the session – apart from any vanity-related reasons, it’s hard to fully engage with a group when you’re tied to a cylinder and I sure as heck wasn’t going to have the energy to lug it all around the rehearsal room with me.

On reflection, I should have been more strict with myself and re-attached when I was sitting down discussing ideas or talking to the group and only coming off when we were doing something that demanded me being on my feet.

That’s a big part of the learning curve that I’m going to be on for the next few weeks, though, and I know I’m going to have to push my boundaries to a large degree and see what I can and can’t cope with.  I appreciate that I don’t have much room for error, but if I don’t try things I’m never going to know how much impact I can have on things.

The rehearsal itself went really well.  The group are all really keen and worked really well, incorporating the new people quickly and in a much more friendly and welcoming way than has often happened in the past. 

They were also all really pleased with the ideas for the show that Suze had drawn up and happy with the casting for the sections we’ve decided on.  There’s going to be a few tough calls on casting for some of the pieces and I think the Hamlet section could prove a tough one to fill – whoever we choose is going to have to work hard.  The great thing with this group, though, is that you know they all will work hard and give it their best.

The 4-hours I was out of the house was, I think, about my limit for the time being – although the strain was doubtless enhanced by my being off the O2 – and on Thursday I really felt it. 

I woke up feeling pretty good, although tired, and I knew I had to take it really easy all day.  Things seemed to go pretty well in recovery terms until about mid-afternoon when everything took a bit of a nose-dive and I completely ran out of energy.

About 5pm my reserves seemed to have deserted me and I was left absolutely shattered and dying for my bed.  I eventually made it until about 9pm, but not before I’d managed to cause a mini-argument with K over the phone by trying to organise things when I was tired.

I really knew I was exhausted when I found myself in bed reading Ben Fogle and James Cracknell’s story of their Atlantic rowing race and getting emotional with the ups and downs they were experiencing in their moods.  When they talked of missing their wives and getting tearful and I started welling up too, I knew I’d let myself get WAY too tired.

Still, today has been a clear and bright day (mentally, if not meteorologically) and I’ve been to Oxford, where my lung function was only ever-so-slightly down (which I still put down to it being taken before not after physio) at 0.7/1.3 and my weight had risen to 50.8kg.  I also spoke to the dietitian about the sickness I’ve been feeling and she prescribed me… something I can’t remember for a couple of weeks to see if it takes it away.

Tonight, with my Gramps here and my bro heading off into the sunset on another punishing course (who’d be in the army, eh?), we sat and ate dinner together before he high-tailed it away to colder, wetter climbs.  Rather him than me. 

Now all that’s left is for me to get my beauty sleep before Phase 1 of the Move Home tomorrow.  If all goes to plan, I’ll be back living in my little apartment paradise by this time Sunday!

For all the forward motion I’ve been making recently, the pendulum was bound to swing back.  I’m sure someone far more intelligent than me said something once about equals and opposites and all that kind of thing, but I have better hair than him, so I can’t be bothered to quote him properly.

Still, after confidently striding forward and warning myself strictly against doing too much too soon, I spent this afternoon in bed after, well, doing too much too soon.

I hasten to my own defence to say that a) I spotted it early and nipped it in the bud and b) actually the hour-or-so I spent in bed on Neve (hmmm… maybe not such a clever idea to name the NIV after all – that could get a little confusing) and the extra session of physio have done me the world of good and this evening I feel top-notch.

Yesterday I went to Oxford to finish IVs – that’s a grand total of 5 weeks all together, my record for recent times.  My chest is a lot better and my lung function was hitting the 0.7/1.4, which is about as high as I go these days.  For those of you who work in percentages, that’s very roughly 20%/25% predicted.  More encouragingly, my SATs were running at 93% on 2 litres O2, which is unheard of for my since around August.

I’m coping pretty well off-oxygen now.  I’m still using it almost all day, but I can cope with wandering around shops (ok, Borders) without it for an hour or so, which is good.

I try to justify it by saying that it makes shopping a whole load easier not having to lug a cylinder around the shop with me, and I reassure myself that I’m good and have it in the car when I’m driving and wear it all the time at home, but if I’m truly honest with myself, it’s still very much a vanity thing.

K and I decided we wanted to cook dinner tomorrow for Mum, Dad and my bro, who’s home for Christmas, to thank them for putting up with me for the last few weeks (well, not my bro, ‘cos he’s not had to cope with me invading his life, but it seemed a bit mean to cook for everyone else and not him when it’s in his home…).  So we had the cunning plan of hitting Tesco’s late last night to avoid the crowds.

At 8pm we thought we’d got it right and BOY were we wrong.  It was still heaving and in one despairing moment of realisation I stood at the threshold of the store in Kingston and realised that it was WAY too huge for me to wander round, especially at the end of a long day.

It’s always a little dispiriting to have to acknowledge your limits – especially when things are looking up again.  But I’m proud of the fact that I didn’t just try to “soldier on” through the shop and completely wipe myself out, but instead called it a night with two bars of Toblerone and headed home.

I think, actually, our late-night jaunt is probably the crux of what lead to my energy shortage this afternoon and, again, I’m pleased I spotted it and took action (or rather, in-action) to combat it without trying to soldier through.  I feel much better for it physically and it’s given me a boost in my mental confidence to know that I’m learning to listen to my body again.

So tomorrow I’ve prescribed myself a day of rest, doing nothing all morning and afternoon and plenty of physio so that I’ve got energy enough to help K whip up a storm in the kitchen and give Mum and Dad a proper thank you.  And my bro, I suppose…