Archives: Transplant

After almost a full 24 hours tucked away in bed sleeping off the after-effects of our 3am bedtime from Tuesday, I was back up to Oxford today to finish off my IV’s and see how the exercise program appears to be working.

First of all, though, I had the morning to spend with one of my best friends who I’ve not seen for an age, who came around with her shears to attack my unruly barnet, which she did with considerable gusto, even tipping a small vat of bleach onto my head for 45 minutes.

To be honest I’m not entirely sure I like the result, but the thing with Lea’s haircuts is that in all the time she’s been doing my hair (which is about 6 years and counting now), I’ve never actually liked the cut or colour for the first 24 hours. I think it’s because it’s nearly always pretty drastic, so I’m not used to the sight that greets me in the mirror. But without fail a couple of days after I’ve had it done, I always LOVE it. I’m odd like that, but there you go.

We’ve kind of got used to each other now – she’ll finish and stand back excited and happy, cooing and purring over her handiwork and I’ll stare at myself in the mirror and um and aahhh over it for a while and generally be unenthusiastic. Then in a couple of days’ time I’ll do my hair in the morning and be straight on the phone to her to tell her how much I love it. Legend, she is.

What’s more, she’s one of those fantastic friends who you can go for months without seeing but pick up from exactly where you left off as soon as you’re back together again. We had such a great time this morning, it really helped lift any of the remaining fug from Tuesday night.

Oxford was good again. With the steroids being tailed off – reduced by a third in the last week, and with a noticeable energy reduction – I was expecting to see a pretty big difference in the workout session with Lou the physio today. So I was pleasantly surprised again (and pleasantly surprised to be pleasantly surprised again) to get through an 8-minute step-up workout with her and see my sats stay in the optimal/safe 90% range during exercise and rising back to 93/94% at rest afterwards.

The next couple of weeks is going to be the real test of the plan’s long-term prospects as I drop the IV’s and begin to slowly ween myself off of the steroids. If I can keep my appetite up and give myself enough fuel to run through the programs I’ve got, then potentially I can keep my chest feeling stronger and clearer for longer and avoid the usual post-IV dip.

The motivation is still there, even if the energy levels are more variable. It’s just a case of trying to find the right moment in each day to get the most out of my chest without leaving me exhausted for the rest of the day. It’s another of those slow learning processes, but at least it’s got very positive benefits to aim for and a real sense of achievement to top it off if it works.

The end-of-IV checks included looking at my lung function which has stayed at a fairly stable 0.8/1.4, which is good if unremarkable. Mind you, I’ve not been over 0.8 for more than a year now, I think, so it’s probably safe to say that’s pretty much my ceiling now, so as long as I’m staying there and not dropping, we know things are going OK.

Although the exercise program is unlikely to improve my base lung function, the hope is that it will help out with the oxygen flow round my body and help reduce the breathlessness. We’ll have to wait and see if the theory holds true, but for now, it’s time to plough onwards.

PS – thank you all for your wonderful comments and messages of support over the last couple of days, they really do make a massive difference in picking myself up and keeping on. And K wanted me to add big thanks to everyone for her birthday wishes to! So you all rock, muchly! xx

I don’t have much to ramble on about this morning, I’m tired and I don’t think my brain is working properly.

I got another call from Harefield last night, around 6pm (the Tx-coordinator actually interrupted the end of Neighbours, the cheek!).  It took me a while to grasp what she was calling about as I’d phoned her earlier and thought she was returning my call, so I was merrily chattering away to her about this that and the other before she manage to slip into the conversation that she wanted me to go down.

It was a very different experience this time, although I can’t quite put my finger on why.  Feeling completely serene (at least for my part), we drove the back roads so as to avoid the rush-hour motorway traffic and got the the ward just before 8pm, where I slowly went through the battery of tests they perform to check your suitability.

For the first time on any of my calls, I saw one of the surgical team, a really nice German/Austrian doc who talked through everything with us in immense amounts of detail which managed to be both petrifying and completely reassuring.  Not quite sure how that works.

The combination of it being early evening rather than late night and the collection of tests and assessments being strung out over a longer period of time all seemed to help the time pass much quicker than on previous calls.

By 11pm I was showered, shaved and scrubbed in my gown, lying in the bed ready to go, waiting on word from the team.  Almost to the second around 11.15pm I started to feel the nerves kick in and then they somewhat ran away with me.   It’s a strange kind of fear that I felt, centred largely on not knowing what I was going to wake up to.

Strangely, I don’t have any fear of dying on the table, or post-op, nor do I particularly fear any of the rest of the process, but what bothers me is not knowing how it’s going to feel and what I’m going to see when I come round the other side.  Everyone reacts totally differently to the op, so it’s impossible to judge by anyone else’s experience how it’s going to be, which in turn means there’s nothing I can do to prepare.

As nervous as I was, though, I was confident in myself and my decision to go ahead with things, and still excited at the prospect of my new lease of life.

Unfortunately, the coordinator came in just after midnight and let us know it was a no-go.  They had apparently all had very long discussions about the suitability of the lungs, but in the end they’d had to err on the side of caution and decided it was just to dangerous to transplant them in their current state.  It was odd, though, as the coordinator seemed almost as gutted as we were – I think everyone there was convinced that this was our time.

I felt completely gutted, in a very literal, physical sense – it felt like I’d been hollowed out in my stomach and left gaping.  The three previous false alarms had been disappointing, but have never caused such a swelling of negative emotion in me.  The journey home was a long, tough one last night.

Of course much of an adverse reaction to things like last night comes through pure tiredness – lack of sleep does all sorts of odd things to your emotions and thought processes.  I know that things have to be 100% right for me to stand a decent chance of coming through things, so I know the docs are doing their best by me.  I know also that they are thinking of me and will get me up whenever they can.

I still feel tired and flat this morning, but I think it just needs 24 hours of bed rest and I’ll be back on all-cylinders again.  Apologies for typos in this, spell-checking is lower on my priority list than sitting doing nothing at the moment.

So I’m now mid-way through my course of IV’s (provided I’m only on for 2 weeks, which is always a big “if”) and I was back up to Oxford today for a check on how things are going, some mid-point bloods and an exercise session.

As I mentioned in my post about my annual review here, the docs think that if I can get myself doing some exercise and building some of the muscle mass I’ve lost over the last few months, I’ll stand a much better chance of keeping my lungs ticking over for a while longer than they may first have predicted.

Apart from the exercise (which I’ll come to in a bit), the most amazing thing to come out of today were my oxygen saturation levels – the amount of O2 that gets transferred into the blood stream to be carried around the oxygen.  I know I’ve been feeling brighter and fitter over the last few days, but nothing prepared me for the physio clipping the monitor to my finger this afternoon.

Normal sats levels run between 99-100% and back when I was off O2 and doing well a couple of years ago – and for a good while before then – I used to run fairly steadily about 96-97%.  Recently, even with my constant flow of 2 litres of oxygen per minute being shoved up my nose, I’ve usually topped out at 89%.  That’s pretty low.  OK , very low.

Imagine my surprise, then (I seem to say that a lot on here, so I guess all you guys who stay with me and continue to read this must have a pretty good imagination by now) when I perched on the bed on the ward today and saw my sats hit 94% at rest for the first time in well over 4 months.

I was totally gobsmacked.  I have to admit it was totally beyond my wildest dreams that I could or would recover the function that I’d lost, having convinced myself I’d waved  it goodbye for this set of billows.  Even my physio seemed a little startled by it, but she said she didn’t see why we couldn’t maintain or even improve them with the right exercise programme.

Obviously, it’s not exactly Olympic standard – I don’t even need any gym equipment, unless you count the beautiful, girly-pink dumbells they had me using for my bicep curls – but it’s something which gets my heart-rate going and will hopefully strengthen some of my core muscle groups and increase my general exercise tolerance.

The programme consists of a “cardio” set (in quotation marks as it’s not exactly pushing my maximum heart-rate) to build endurance and “weights” set (in quotation marks because all but one of the exercises actually uses body weight and nothing more) to strengthen my arms and legs, the areas which take the biggest hit during any period of inactivity.

The endurance set is a very simple 5-6 minutes of step-ups onto a low stair, broken up into 1 minute reps with 30 seconds recovery in between.  The aim is to increase the time by 30 seconds every couple of days until I reach a comfortable but taxing plateau, repeating the set every day.

The strengthening set consists of several different extension exercises, including leg-lifts, quad stretches, hip movement and arm/shoulder lifts. The idea is to do 3 sets of 8-10 reps of each of the exercises three times a week – so Monday, Wednesday and Friday, I should think.

I’m actually really psyched about being presented with something that I can do to help myself.  For so long now I’ve felt like a passenger on this ride.  I know that doing nebs and physio everyday is a big part of fighting off the avalanche of attackers busying themselves in my chest, but this finally feels like I have a chance to do something to take the bull by the horns and drag myself back up the slope.  (And on the way up I’ll find some more weird metaphors to mix, too).

It remains to be seen just how good I am at staying motivated when things get tough and I’m tired, aching and stressed out, but everything has to start somewhere, so it might as well be on a high.  If I can just help to turn this into a habit, then maybe it’ll become as second nature to me as nebs and physio are at the moment.

Needless to say, I’ll be doing my best to use the blog as an exercise diary, so I can be applauded or chided as necessary to spur me on.

(PS – for the record, my lung function mid-IV’s is at 0.8/1.5 which is actually better than it was at the END of my previous set of IV’s)

You know, living from day to day gives a weird perspective on life. I’ve said it before and doubtless I’ll have plenty of opportunity to say it again in the future, but this bumpy road called life certainly throws up a few of those Yank-loved curveballs.

Today, I’ve done hardly anything more than I have done for the last three weeks – I took K to work (possible on a good day, not an exceptional event), I worked on the computer (and have just remembered the one thing I had to do that I forgot to – hooray for me), I had a cup of tea with my Mum (she was having withdrawal symptoms, so had to swing by on her way off for the weekend) and went for a bit of a drive in the sunshine when I picked K up from work, which is about the only difference to my days of the last month or so.

But I did all of this while feeling absolutely brilliant. My chest felt open and clearer than it has in ages, I only stopped to grab my breath a couple of times in the whole day. At no point did I get overwhelmed by tiredness and I didn’t have to have a snooze after my afternoon dose of drugs. It would not be an over-statement to say that today I’ve felt amazing.

It’s all relative, I know, and compared to “normal” people, or even to how I was six months ago, it’s probably not much cop – I’m certainly not bounding up staircases or thinking about giving my oxygen the heave-ho – but to spend a day without the burden and weight of lugging around a stroppy chest and cloudy head has been truly indescribable.

(There’s an irony here about an entire blog entry trying to describe something which I can only describe as indescribable. Maybe there’s a hint at how I can cut down my word counts, too…)

I’m also aware that this feeling may not last for long. By tomorrow, the updraft could have floated away on the breeze and I’ll be gliding gracefully back down to sofa-dom, but interestingly I think it’s made me appreciate and enjoy today all the more. I have so many truly rubbish days these days that to have even a sniff of a good one is beyond compare.

If it goes a little way to making this journey a little smoother, to making me a little happier, to making these blowers last a little longer, then I can plough through the rough and enjoy the hell out of the smooth.

Tonight, aided by Happy Feet (go rent it now, it’s brilliant) and the unmistakable rhythm of life, my heart and my head are vibrating with the energy of the world and an old African proverb has just sprung into my head:

“If you can walk, you can dance
If you can talk, you can sing.”

Let the sun shine, let the music play, let the world spin on and don’t let it stop. In the words of a much wiser lady than I, “This is my life and I choose to love it”.

I was back in Oxford today for the second half of my annual review and surprisingly, given the distinctly non-positive vibe that I’ve been getting from recent hospital visits, I actually came away feeling good today.

The diabetes tests looked clear – or at least not significantly abnormal, my blood sugars remaining pretty much within the normal range consistently for the last couple of weeks while I’ve been measuring them, which was a good start.

Even better, though, was my conversation with my consultant, the ever-wonderful Dr Bennett, who is encouraged by my progress since June.

I’ve been more and more breathless recently and it’s started to impact more and more on what I can and can’t do (as you’re no doubt aware if you’ve been following along).  Raising it with the team today I was fully expecting downcast looks and a feeling of, “that’s pretty much where you are now,” and facing a determination to put up with it and keep fighting.

To my immense pleasure and surprise, DocB felt that it’s something we can tackle, given the right effort and application and can aim to improve my breathlessness and stamina and bring my quality of life back up.

Looking at my health in general since my downturn in June, she suggested that although I’d had a really bad month and the infection had hit me very hard, it was encouraging to see that my lung function had pretty much returned to what it was pre-exacerbation – about 0.8./1.3 (actually dropping slightly to 0.7/1.2 today, but I was expecting that, and to go on IV’s, anyway).  What this indicates is that the infection, whilst making me seriously ill, doesn’t appear to have any lasting impact on the conditioning in my lungs.

What has been affected, clearly, is my exercise tolerance and muscle mass, both significantly weakened by spending the whole month in bed and by not being worked on in the four weeks or so since.  It is DocB’s belief that if we can work out an exercise plan, with extra oxygen support as necessary, and work to improve my cardio-vascular fitness, there’s no reason we can’t combat the breathlessness.

This was all news too me – good news, to be sure, but news all the same.  I had resigned myself, I think, to the downward slope of things ahead and didn’t really think there was much of a way around it.  So it feels pretty great to be told not only that there’s potential improvement around, but that the docs actually feel like it’s achievable.

Clearly, it’s not going to mean a massive turn around, but if I can raise my tolerance levels enough to manage a trip out of the house a little more often, maybe a stroll around Borders once in a while, it’ll make a big difference to keeping my spirits up.

It’s doubtless going to be a really hard slog and I don’t quite know how I’m going to deal with it at the moment.  I’ve never really pushed myself really hard through exercise and I’ve no doubt that whatever program I’m given, whilst laughably pitiful for regular mortals, is going to be a hell of a job for me.

But when you’re facing the months ahead that I’m facing, I suppose motivation should be too much of a factor – after all, my entire life right now is focused on stretching things out as long as I can until that call comes.  If doing 5 minutes of step ups a couple of times a day is going to help achieve that, I can learn to tolerate the gasping and rasping that comes with it.

I’m sure I’ve said it on here before, but sometimes the on-going frustrations of life with little lung start to get to you.

The last few days have seen a small pattern forming of good mornings and a gradual downward slide during the afternoon, which is just about possible to cope with when you know what to expect. It’s the limitations of the downward turns that are starting to get to me.

Take this afternoon, for instance – by no means a stand-alone example and definitely something that’s struck me over the weekend, too – when K was feeling pretty rubbish.

Home from a day at work and having bathed to wash the day away, like many of us she just needed a little bit of TLC. TLC for K meaning Tea, Love and Chocolate.

Wanting to do what I could (not being content with only being able to offer one of three) I headed to the kitchen to brew up a cuppa and the five-minute rinsing/boiling/brewing marathon left me breathless and exhausted.

It was standing over two cups of half-made tea, leaning on the counter trying to get my breath back that things threatened to boil over – and by that point the kettle had been turned off.

It goes beyond what you’d call “frustration” – it’s so much more than that. I was overwhelmingly angry as I stood there feeling utterly useless and debilitated. The trouble was, I don’t really know what I was angry at. I’m not even sure there is a something to be angry at.

I was just angry. And as if to rub hard-crusted rock salt into the gaping jaws of a shimmering, seeping wound I couldn’t even summon up enough air in my lungs to scream in frustration.

It strikes me as the ultimate sort of irony that the next time I have enough energy and breathe to scream at how sh*tty it all is, I’ll be passed it and won’t need to scream.

But I can’t tell you how much I’m looking forward to whatever the first thing to really rile me post-transplant is, because boy is something going to get it full-blast.

So a word to the wise – be nice to me after my op, you never know when I’m gonna blow.

I’m not entirely sure what day it is today.  I’m fairly confident it’s Saturday because there’s more sport and less Richard and Judy on TV, but as far as I’m aware it could just as easily be Tuesday week.

I’ve suffered something of a lack of sleep over the last few days and my body clock is so far out of synch I could be in Australia.  All thanks to my third aborted transplant call.

Aborted call, false alarm, non-go-ahead shout, call it what you will, it was my third foray down to Harefield in the middle of the night to be pricked, plugged and prepped for an op that never came.

This one was, however, at least mildly entertainingly different, being as I was a “back-up” recipient for the first time in my 3 calls.  The previous two times it has happened, I’ve been right ready to receive the lungs when it was decided they were no good.  This time, I was second in line to someone waiting (at another hospital) for both heart and lungs, which obviously come best as a package.  Should there have been anything wrong with the heart or should there have been any reason the other recipient was unable to go ahead with the operation,  I would have received the lungs.

This meant a very different thought process for me from the last times I was on ward F East, nervously waiting to be told if they were good enough or not.  This time, I was convinced from the moment I spoke to the T-C, Julie, at just after 11pm that it would not be my night.  Which lead, inevitably, to a VERY boring 5 hour wait in a room on the ward to be told that I wouldn’t be heading to theatre.

The saving grace of the whole night was the comforting knowledge that the heart had been fine and the heart and lungs were being transplanted into the original recipient on the list.  Not only did it mean that at least someone’s life was being transformed in the early commuter hours of Friday morning, but that the organs of a lost loved one were being put to the greatest use possible and that perhaps in days or weeks to come their family may draw some comfort from that fact.

As it happened, all the whole experience meant for me was an entire night with no sleep whatsoever, which in turn lead to sleeping from 7.30am (when we finally arrived home in the morning on Friday) until 2pm and sitting through the rest of the eternally-dragging day feeling beyond terrible, hardly able to lift myself from the bed to drink some water, let alone contemplate eating or doing anything more energetic like watching TV.

It was pretty horrible, to be honest, and a mark of how much my body now struggles to cope with the unexpected.  Without a night’s sleep to rest up and repair some of the daily damage, my body was truly struggling to cope and wasn’t backward in coming forward about it – it was making more than sure I knew about it.

Things are better today, after a sensible night’s sleep, although the tiredness is still pervasive and I could do with a kip every half-hour.  I’m sure after another day in bed and another good night’s sleep I’ll be back where I was before.

And at least this time I managed a whole 6 hours at Harefield without mortally offending someone.

I like to think that I’m a nice guy – I’m friendly, jocular (wow – now that’s a pretentious sounding word when you put it down in black-and-white), fairly unimposing generally and keen to get on with people.  I’m also always keen to make a good impression when I meet people.

Imagine my dismay – nay, my horror – at putting my foot so spectacularly in mouth that I could almost taste my kneecaps.  Not only that, but doing it with one of the lovely, friendly, wonderful and caring transplant coordinators, in whose hands – more or less – my life may rest.

The coordinators at Harefield (there are 4 of them) have changed around over the last year or so, meaning that I’ve actually only met 2 of them in person.  I’ve spoken to all of them and know them to talk to, but it’s still very different meeting someone in person.

So it was a delight to meet one of the disembodied voices at the clinic I went to yesterday.  In fact, she even shared my sentiments, telling me, “It’s nice to put a face to a name – to finally get to meet the person you know down a phone line.”

How lovely.  Being the self-depreciating chap that I am, I countered with a swift, “I’m always a bit disappointing, though.”

Only I didn’t.  The first word didn’t actually appear to emerge from my mouth when it should have been the most prominent part of the sentence, leaving merely, “Always a bit disappointing.”

It was one of those wonderful moments when you realise you’ve sunk yourself so deep into a giant well of not-very-niceness, when your stomach lurches and your brain races to catch up to say something to hurriedly recover the situation, but all the while you just know that nothing you can say is going to make it sound any better.

I drifted off into a daze of internal arguments with myself of how best to back-track, while the vast majority of my head is telling me not to say anything more as I’d only get more and more David Brent with every passing word.

By this time, of course, I look like I’ve just hurled and insult and shut up shop – even better!  Not only do I knock the lovely lady down, but I then ignore her completely.

I tell you something, my brain is in a LOT of trouble, not to mention my mouth for running off and starting the whole escapade before it’s communicated properly with the up-top.

Cringe-worthy introductions aside, and ignoring the fact that I spent the majority of my trip to Harefield yesterday waiting (appropriate, I suppose, given the subject of the visit and the hospital), it actually went rather well.  I think they could see that I’m no where near as well as I was last time I saw them and probably consider me a more important/urgent case than perhaps was their perception before they caught up with my  for my review yesterday.

So, provided the mortified coordinator (who shall remain firmly nameless) hasn’t sent a memo round telling everyone that I’m the last person on earth who should be given a second chance, I’m hopeful that my habit of getting through things almost exactly 6-months behind our Emily means that I’m due my new blowers any day now.

We can but hope.

I’ve come to the conclusion that if I’m going to be sitting around on my rump for the greater part of the passing days, then I might at least put the working parts of my body to good use and exercise my eyes and brain by learning some new stuff.

So in a spirit of adventure, I have embarked upon devouring the full 800-odd closely-typed pages of a biography of Churchill written by a man so famous that his name eludes me and shall continue to do until I clamber into bed this evening, seeing as I’m not inclined to rise myself from my typing post to go and check it now.

(The thought has just occurred to me that I could check the author’s name on Amazon, and even provide a link to said biography, save for the very important fact that it would interrupt my flow and my stream-of-consciousness would become merely a trickle.)

It’s heavy going, for sure, and I’m only managing about a chapter a day – any more and I don’t think I’d take any of it on board – but it’s fascinating stuff.  He was quite an impressive bloke that Churchill, not just bowler hats and cigars, you know.

I’m also working my way through the Alastair Campbell Diaries, which are just as fascinating, albeit in a very different way.  They’re much more easy to read and digest, too and being in daily-diary format (my personal preference for historical/biographic material) are much easier to pick up and put down.

I say easier to pick up, actually they’re mildly hard since they’re about the same numberr of pages, but in hardback not softcover, making Alastair Campbell more weighty than Churchill and I bet that’s not something oft said.

Given the political bent to my current reading, I have developed something of an obsession with it over the past few weeks and have additionally to my real-world reading, spent a lot of today online learning all about the parliamentary process and goings on in the Houses of Parliament.

They say you learn something new everyday, which is undoubtedly true, but by my judgement, I can after today go for the next eight and a half weeks without learning a thing and still hit my average for the quarter.

Other than that, I’ve not done much today.  Harefield tomorrow – I’m going to lobby them with my new-found political powers to bump me up to the top of the list and get my butt-sittery days behind me.

It’s been an up-and-down few days (when isn’t it, these days), but more up than down.

The trouble is, this evening I feel so tired and my back is causing me so much bother that try as I might, I’m struggling to pin-point the highs and lows  of the last few days.

A definite high was seeing K’s big niece, little niece and nephew, all of whom I haven’t seen for ages.  It was nice to see their dad, too, although even nicer of him to go get us a paper (thanks, Rob!).

I managed a good hour or so of fairly sedate entertainment, leaving K to do most of the running around and baby-chasing as little Jack set off exploring the wonders of the un-baby-proofed apartment.   Having palmed off the high-maintenance duties to K, I settled myself with a game of chess and a bit of a story book/CBeebies magazine, which is much more my kind of pace.  Although chess with a 1-year-old knocking about is a far more defensive game.

The rest of Sunday was gainfully employed resting, although we did pop over to my ‘rents for some food in the evening.  The trouble is it’s such a long way away now (yes, 20 minutes’ drive is a long way now) that to avoid being a dangerous, half-asleep driver on the way home, we literally only get to swoop in for food and then run away.  I know parents are parents and they don’t mind things like that, but it does bother me somewhat how anti-social we can be.

I suppose it’s one more thing to look forward to post-transplant: those long, leisurely Sunday lunches which start at lunchtime and roll on to dinner time with a good deal of laughing and chatting in the middle.  Another thing to add to my “To Do’s”.

Saturday was very quiet, resting up at the promise of baby visits on Sunday, and expecting a slightly fuller day of visitors were it not for the odd drunken mishap changing plans around. (No names.)

Today started really well after a bad night’s sleep.  I woke feeling surprisingly spritely and sat reading for a while before showering (with my oxygen!) and doing physio and finally getting through the few pieces of copy I had to write to finish off this issue of CF Talk.  We should now be at a final proof stage, which I should receive in the next few days, and  I can check it, correct the mistakes, sign off the whole thing and get it out.

This afternoon has seen a bit of a down-turn, with my chest getting a bit tighter and me more breathless, with a slow onset of not only a headache but a good deal of back pain, too.

As I write, I’m about to whisk myself off to bed to see if I can settle myself and sort it out, before trying to get an early night’s sleep for a change.  I could really do with a good, long night’s kip.  Here goes…