Archives: Drugs

I’ve just got back from 3 days in Durham where I was asked to talk at an event for the CF Trust for CF Week this week.

It’s an event I first spoke at 3 years ago when I was just 6 months post transplant and it was great to go back to the lovely ladies lunch and share my story so far as well as my hopes and dreams for the future.

The biggest part of my speech was concerned with helping raise funds for the CF Trust, who work tirelessly year-in, year-out to fund clinical research to improve drug therapies, hospital care and overall outcomes for people with CF across the UK.  My hope – as I expressed to the women at the lunch – was that by helping fund the CF Trust’s research into gene therapy and developing a therapy that prevents the eventually-fatal lung damage from CF we can prevent anyone having to go through what I’ve been through.

Not only have I, obviously, been through the hellish wait on the transplant list not knowing whether my call would come in time or if I would die while I wait, but I’ve also had to watch far too many of my friends die while they waited. And now I’m having to watch Tor (who I wrote about most recently in my previous post) endure over twice the wait I went through and see the life and the hope slip in and out of her eyes each and every day.

By donating to the CF Trust this week (or any week), you can make a huge difference to the lives of children being born with this disease today and prevent them ever having to experience the truly devastating side-effects of a life lived in the shadow of an early death.

This is going to be a short summary of how we got to where we are, but suffice it to say that the end result is WE’RE GOING TO HAWAII TOMORROW!!!

It’s been a crazy last 8 days, starting with feeling slightly odd leading right up to Saturday’s blog detailing my admission. My lovely new iPhone then decided to stop working as an internet-receptacle so I couldn’t update the blog any further.

The docs essentially said on Saturday that they a) had no idea what was wrong with me but b) that it looked pretty bad. Although the X-ray techs refused to CT me, the docs between them had come upon the summation that it was some kind of chest infection which meant that whatever happened, Hawaii was off.

When they came around Sunday they told me I was well enough to go home – they still didn’t know what it was but the 24 hours of oral antibiotics they’d had me on were seeing my infection markers dropping and things looked OK. I thanked them and they left.

Them then team leader reg for the weekend came back in and asked about Hawaii. Essentially, he said, they needed to ask themselves 3 questions as my doctors:

1) Was I well enough to go?
2) Was I a danger to other passengers on a plane (ie, through Swine ‘Flu etc)
3) Was I fully insured in case anything worsened or happened beyond what they’d observed.

The answers, as he gave them, were:

1) Yes, as far as they were concerned.
2) No, as they didn’t believe I’d had Swine ‘Flu in the first place
3) They would need me to see.

Cue a frantic rush around last night to try to find out what our insurance policy covered. What we came up with was that because the admission happened before I flew, the chest infection then counts as a pre-existing medical condition which they must be made aware of or no treatment related to it in any way will be covered while we’re away. Being a Bank Holiday weekend, this meant that we were now unable to inform them of the change until we flew, which essentially voided the policy.

Cue frantic scramble to find a company that would cover me for CF, lung transplant and a resolving chest infection – all three of which would need to be covered if I needed any treatment for an exacerbation of my current condition. After a pleasantly home-bound night’s sleep we spoke to a company this morning and – in brief – we shelled out a very large amount of money to ensure we didn’t have to claim back a slightly very larger amount of money for canceling the holiday and we were set to go.

Cue frantic running around the Bank Holiday shops today to fill my uni shopping list, my holiday shopping list and still get back in time to pack it all into boxes, bags and suitcases in time to head over to the ‘rents this evening for dinner and sleeps so they can run us to the airport at silly o’clock tomorrow morning.

It’s been a total whirlwind and both K and I are pretty overwhelmed by it all, but the bottom line is that we’re on our way to Hawaii. And when I get back I’ll have less than 12 hours in Liverpool before the start of my first ever term of uni. At the end of it all, things couldn’t really be more exciting. I just wish I’d done it all in a slightly more boring and less melodramatic way.

I really should learn to keep my mouth shut. Less than 24 hours after confidently blogging that I was on the mend I find myself on the ward at Harefield stuck in my own private episode of House.

I woke on Friday with a much chestier cough and weakness in my legs and – after chatting to my GP and after he chatted to the registrar at Harefield they decided that the best bet was for me to go to Harefield and get properly examined and worked up by the pros.

The biggest down point appeared to be that it was looking less and less like something that is fixable by the time we’re due to leave for Hawaii. We’re fully insured for it, but to be honest the money was the last of our worries.

Arriving at Harefield I was popped in a room and prodded and poked about a bit before sitting down with AP the reg to go over the options.

K and I, being big fans of Hugh Laurie in House, almost burst put laughing when AP actually said, “differential diagnosis”.

There seem to be 3 viable options did everything this week and the condition I’m in now: 1) Swine ‘flu, plain and simple, for which they can send me home with Tamiflu and let us go to Hawaii. 2) A recurrance of the CMV I was admitted with last year, for which they can send me home with a course of Valganciclovir and let us go to Hawaii. 3) A chest infection, either as a result of, independent of or additional too some kind of ‘flu or virus, which would be game over for Hawaii

So I’ve now been bled dry and X-rayed, but the blood results won’t be back until later this morning/afternoon and I’m down for a CT scan at some point today after the X-ray was inconclusive.

It’s a pretty horrible feeling sitting around waiting for test results that will dictate whether I can go on my guest holiday in 6 years or if, like May 2008, my body has conspired to stop me having ant foreign fun at all.

Keep your fingers crossed – I’ll update the blog & Twitter once I know the score. Suddenly “Smile Through It” seems ever so appropriate again.

All this rushing around doesn’t seem to suit me. No sooner had I blogged about all the necessaries for holiday and uni prep than I started feeling a little pesky with a bit of a sore throat. Monday night I woke at 4am with a roaring fever and raging headache splitting my very delicate and uni-bound cranium in two.

After fighting for more sleep, I eventually hauled my butt out of bed at 8am to spend an hour tossing my cookies in the bathroom. When I managed to stop hurling for five minutes I dragged myself to the phone to call the ‘rents and tell them I suspected ‘flu.

Funnily enough, at the time I was more concerned with not passing it on to K as having it 8 days before we’re dye at the airport for Hawaii is bad enough but if it were to gestate a little longer and hit her 5 days before we flew, our holiday could be in very real danger.

Mum and Dad thus rode to my rescue and I’ve been holed up in quarantine at Chez Parental for the last 3 days, with regular GP visits and Harefield consultations. Tuesday was the most concerning day as I kept being sick, a very bad thing when my new lungs are dependent on oral immunosuppressants to keep working properly.

One very sore injection in my left butt cheek later (still hurts, by the way) and the vomiting, though not the nausea, stopped and from there on in I’ve been improving all week.

Now all but mended, I’ll be heading home tomorrow to finish off my uni and holiday packing which I’ve so far abandoned K to. My lung function is looking good, so despite the slight cough I’ve got I’m confident there’s nothing serious going on.

It’s been a pretty rubbish week, bur with so much coming up in the next few weeks I’m kind of glad it happened now and hasn’t – touch wood – spoiled either the holiday or my first weeks at uni.

Lots to do and little time, but still enough to reflect on the marvel that it post-transplant recovery. Had I fallen I’ll a week before flying abroad pre-transplant there’s no way I’d have been fit to leave the country. Thank heavens for the gift of life – a phrase that gains more meaning and resonance each and every day.

My alarm wakes me just after 7am, so I tell it to go away for a while and eventually rouse myself around 7.30ish, where upon I take my Monday morning tablet (the weekly not-so-nice one) and head into work.

The great thing about being a freelancer and working for yourself is that “going back to work” entails turning the computer on and checking emails. It’s a hard life.

I sit at my desk and I rapidly fly through 6 pages of my new script and, today’s quota reached, I put it away for now – silly as it sounds, it’s important not to over-stretch yourself when writing. Meet your quota, whatever you set for yourself, but if it’s not flowing, don’t force it just to get more pages done.

With that out the way, I get on with catching up on the world outside by checking my usual list of industry websites to get the skinny on all the Christmas/New Year deals and rumours.

Once I’m all caught up, I hit my Live Life Then Give Life email account and immediately log in to sad news. Luckily, no one has died (as this is the kind of sad news we get all too often at LLTGL), but I can’t really go into detail about it at the moment as it’s still being resolved.

Once I’m caught up on the not-as-many emails as I’d expected, I set about the rest of my day, although it’s now so long ago, I’m struggling to remember what I did, so suffice it to say I was busy for nearly all of the day on various bits and pieces of work-related gumf.

So I’ve managed to get myself into trouble with… well… everyone this week, although I personally blame K for it, since it was her status update on Facebook which drove the minor frenzy on Wednesday.

Following my extremely positive annual review at Harefield a couple of weeks ago, Doc C lined me up to have my port-a-cath removed – that’s the small venous access device that sat under the skin on my shoulder and was used to pump my regular IVs into me when I was on them every few weeks, less painful and much less hassle than having longlines and cannulae.

Anyway, Doc C is really happy that I’ve progressed enough now that it can come out, basically saying that I’m not going to need IVs again, that to all intents and purposes, I’m “better”.

To my surprise, having thought it would take at least a month or two to sort out a port date, they phoned me last Thursday and arranged for me to come in on Wednesday and have it taken out by one of their surgeons – and who says the NHS isn’t fast?

So off I toddled, with Dad driving as I wasn’t too keen on ferrying myself back home after having my shoulder sliced open, own to Harefield on Wednesday morning, fully expecting a quick and painless procedure under a local anaethetic and then to be shipped off home.

Upon arrival and talking to the surgeon, however, i became clear that there was a large possibilty of the line causing problems with bleeding etc during the op, so he wanted to knock me out under general anaesthetic so I wouldn’t have to put up with the rather over-dramatic process of fixing things up once he’d cut me open.

Of course, the time before last that I ad a general, I ended up on intensive care – nothing to do with the anaesthetic, mind you – but this set alarm bells ringing for K, who posted an update on Facebook saying she was worried about me and my op.

Having thought it was only a minor, local thing, I hadn’t actually told anyone about going in to have it done, other than my ‘rents and K’s and the people I was supposed to be meeting with that lunchtime.  So, naturally, everyone who read the update panicked and starting sending all sorts of (lovely) concerned messages to K to find out what was going on.

I thought I’d help matters once I was straight-headed again yesterday by posting my own update apologising for not telling people.  Only then it got read by all the people who’d missed K’s status update and so still didn’t know, who then got the same level of worriedness about something that had been and gone and I got plied with even more (lovely) concerned emails and was once again berated for keeping it to myself.

So, for the record – apologies to everyone that I didn’t tell you it was going to happen and apologies to those people who we worried by not explaining ourselves properly.

Also for the record, everything went fine, there was no extra bleeding and my mini-lifeline that’s been in situ for over 13 years slid out nicely under the surgeon’s deft hands and now, presumably, lies in a pile of ash at the bottom of an incinerator.  Weird thought.

My shoulder is still pretty sore – hadn’t really thought that one through ahead of time, but it’s a bit obvious really – but I’ve got good painkillers to deal with it and I’m now able to walk about and generally use the arm, which is a good deal better than yesterday.

I solemnly swear from now on that any and all procedures that I know about in advance will be adequately diarised on here BEFORE they happen so that we don’t freak anyone else out.

Sorry.

Today has been a pretty impressively brilliant day.

It was another Harefield appointment, my first in six weeks after MC told me that it was a bit pointless coming back until they had clear data on whether my CMV had retreated for good or not.  So he had sent me away with instructions to send in bloods every 2 weeks to keep a check on things and that if I hit the 3 month mark with no adverse effects or without showing anything above a zero on my CMV then he’d take me off the Valganciclovir I’ve been on since May and see if my body will cope without it without submitting to CMV again.

Seeing him today with a month-and-a-half of clear results, he was suitable pleased and happy for me to drop my Valgan and continue with everything else, albeit being very much more aware and careful about the first signs of CMV infection, necessitated by the fact that CMV can very rapidly kick-start rejection of the not-very-good kind, which could do my serious damage.

That said, though, he came out with something I wasn’t expecting to hear at all.  Although I may feel like I’ve had a fair number of blips, he thinks I’m doing incredibly well and – going by his experience of CF patients post-transplant – thinks I now stand a better-than-average chance of 5-year survival.

At the time of my transplant, I was quoted statistics saying that 73% of people make it through the first year, and within that 27% that don’t are included people who may die on the table or suffer serious post-operative complications.  Once you stretch the survival period to 5-years, the odds stand at 50/50, but MC now believes that for me the benchmark can be shifted from 50/50 at 5 years to 50/50 to make 10 years.

Another decade of life is better than I think many of us dared to hope.  I said before my transplant if I’m given just six months of a new life I’d be happy.  Time enough to play with my Godsons, experience the things I’d not been able to do for breathlessness and lack of energy, learn to do things on a whim again.  Having slipped past that stage back in May, albeit in the middle of a CMV/EBV attack, I’ve felt contented with my lot, whatever is thrown at me next.  To know now that there’s a very real possibility of a future worth planning for is too incomparable for words.

I’m aware every day that someone, somewhere has lost someone they loved very dearly.  I just hope I can make enough use of the extra time I’ve been given to show them what a truly wonderful gift they have given not just me, but my family, too.

It’s taken me a while to get around to writing about my admission for two weeks almost a month ago, but that’s because I’ve still not really managed to wrap my head around the whole deal.

The two weeks I spent on the ward in Harefield in the middle of May were the hardest two weeks of “inmate” time I’ve spent for a long time and I’m not entirely sure why. Perhaps it was something to do with being on an open ward, something I’ve only experienced once or twice in my life, despite numerous, often lengthy, hospital admissions. Perhaps it was because I was missing out on the holiday with a big group of friends that K and I had been planning for close on 3 months.

Above everything, though, I think I struggled more than I have for a while because something in my brain told me I was passed all this. My new lungs have had an amazing start. A minor hiccup after 2 weeks not withstanding, they’ve gone from strength to strength and my lung function has been steadily rising, my exercise tolerance going with it. I even completed the famed last mile of Tresco with my brother and started entertaining thoughts of doing the whole thing next year.

So I suppose I had kind of taken my eyes off the post-transplant complications ball and started to enjoy life without a second thought for whatever else was going on, assuming everything was tickety-boo. Which is, I suppose, a lesson in itself. While new lungs mean great new things, you can never take their health for granted and even though I’d been booming for the last three months, it doesn’t take much to send the body reeling.

The chest pains I’d been worried about were initially diagnosed as Gastritis, but when I saw the team at Harefield I had managed to spike a good-looking temperature to go with the pain and nausea, leaving them little choice but to admit me. For the first 24-48 hours the cause of my ailments seemed a mystery to the docs, until they got my CMV count back, at which point they were more contented, knowing that they knew how to deal with it now that it had been properly identified.

There’s something disconcerting about being given drugs intravenously which are so toxic the nurses have to wear gloves and the pregnant women aren’t even allowed to touch the packaging. Knowing they can’t go near while you watch it being pumped into your veins is pretty bizarre and something I’ve never got used to, despite a history of high-caliber potions in my time.

When I was moved to the open ward, which happened to coincide with K’s departure on the holiday with our friends (at my insistence, I must add, and under considerable duress) and I dropped into a pretty deep funk. It’s the lowest I’ve been since the darkest days of the early post-transplant period and there didn’t seem to be a whole lot going for me at the time.

I’m slightly ashamed of myself now for letting it all get on top of me so much, since at the end of the day I was still a good deal healthier than I had been not 6 months ago, but for some reason (or, I suppose, a myriad of reasons) I couldn’t raise my spirits at all.

Luckily, at Dad’s suggestion, I managed to secure a weekend release while the guys were all away. The ‘rents agreed to drive me in for my doses of anti-biotics twice a day, but I was free to go home for food, rest and over-night sleep, something I’d been getting very little of on the ward, what with the world’s loudest talker on one side and the telly addict on the other.

Eventually, thank goodness, my consultant, the amazing Doc C returned from his paternity leave in the middle of the next week and on his first round of the day told me I was free to head home as they expected my viral load to be low enough to no longer necessitate the use of the IV drugs, enabling a switch to the more home-friendly orals.

I hadn’t been happier than that afternoon when I got back to the flat just after K returned from the holiday and we could just chill out on the sofa and enjoy each other’s company again after nearly a week apart – pretty much the longest we’ve spent away from each other since we got together.

Getting used to the ups and downs of transplant is clearly taking me longer than I thought it would. My mind appears convinced that things can only go well, so any minor hiccup is a bigger deal than it ought to be because it carries with it something of a heavy shock value. I need to keep reminding myself that it was only 6 months ago that I had new lungs fitted and that I still have a way to go to fully recover, however good I may feel right now.

So I’m trying to take things a little more slowly, although how long that will last we’ll have to wait and see. The main thing for me at the moment is doing what I can to avoid what Doc C affectionately calls the “Superman complex”, whereby people (mostly men) post-transplant start to see themselves as indestructible and slacken off their meds and treatments. It’s hardly the way to say thank you for the greatest gift of all, so I’m determined to stay away from it and keep myself at my best.

I wake to my Tac-alarm (the 10am call that stirs me every morning I’m not up in time for my morning dose of Tacrolimus, my main immunosuppressant) and sit and read for a while as K comes to.  Once we’ve rolled out of bed and managed to get some clothes on, we hop in the car and run ourselves into town.  The walk along the river yesterday was great, but knowing we’re going to be exploring all over the hills of Durham today, we opt to take the car in to the centre so the journey home is easier if we’re exhausted by the end of the day.

We park up in their multi-storey by the Elphick Bridge and wander out through their “shopping centre”.  I use inverted commas because it’s not so much a shopping centre as a centralised collection of shops in a U-shape off a parking structure.  Given the olde worlde nature of the rest of the city, the cul-de-sac of high-street shops is somewhat incongruous, but we let it slip past us as we wander off and up the Bailey in search of breakfast, which we find not halfway up the street in the shape of Saddler’s, a small-but-perfectly-formed little cafe which does breakfast till 12 (we make it by 15 minutes) and other luxury items throughout the day.

Having charged ourselves for the day ahead, we continue up the Bailey towards the Palace green and the Cathedral which towers over the whole of the centre of Durham.  I pull out the camera to snap some pics as we approach only to discover I’ve forgotten to charge the battery.  I swear at myself a lot.  Mostly under my breath, although a couple of passing pigeons may have heard a little bit of blue-air in passing, for which I profusely apologise.   What makes it more galling is the fact that the weather forecast for the next few days is terrible, including snow storms tomorrow.  As we walk up to the Cathedral, with the castle bearing down on us from behind, the skies are a crystal-clear blue with barely a smattering of clouds, the city bathed in a warm Spring glow which fails to dissipate through the day.  I’m furious with myself for missing the best part of the weekend to snap decent pics of one of my new favourite homeland locations.

After an interval that would seem short for even the most temperamental five-year old, I clear out of my funk as we enter the cathedral.  It’s magnificence defies even my power of description.  I’m relieved to see all the signs telling me photography is forbidden, making me mildly less frustrated, but am soon distracted by all the point-and-wonder beauty of the inside of the building.  From the windows to the pillars, ever inch of the cathedral is steeped in over 1000 years of history.  The cathedral itself used to provide a respite for fugitives and law-breakers.  With a single knock on the great door, they would be admitted for safe harbour, given 30 days to sort out their affairs or leave the country through the nearest port.

The main hall of the cathedral is adjoined by a cloistered area and a dozen or so more rooms which afford the place ample space for coffee-shops, souvenirs and all the additional gubbins of a modern-day historical site whilst still allowing it to go about it’s regular daily business as a place of worship.

We eventually decide that it’s too much for us to take in after a big walk and with feet starting to ache, so we adjourn for the day to lower climbs down at the bottom of the hill over the bridge where we settle in for lunch at the Swan and 3 Cygnets, a pub which doesn’t end up providing the rustic-pub-grub that we had been hoping for, but it’s decent enough sustenance all the same.

While we eat, we talk to Pops, who’s calling it quits on her day’s work and heading down to meet us, nothing at all to do with the cafe opposite the pub having, “the best cake in Durham” (a direct quote from the text message).  She and her other half wander down and we head over the road to the Cafe Continental and seclude ourselves away in their uppermost room, where the two of them have lunch while K joins them in dessert.  I restrict myself a mediocre milkshake, but I’m assured by all and sundry that the cakes are, indeed, magical.

Totally failing in our planned return to the college to catch some Z’s before the later afternoon’s programme of events, we instead end up sitting and whiling away most of the afternoon in the cafe with Pops and Alex, covering as many conversational bases as it’s possible to cover without slipping into a brain-frying tangential spiral more akin to Eddie Izzard.  Mind you, we still manage to fit in a good few tangents all the same.

We head back to the college, paying our extortionate parking charges on the way, and grab a quick feet-up 20 minutes before we head back up to Castle for the afternoon’s main attraction, the Big Chill With Bill – an opportunity for the Durham students to come and meet their Chancellor that surprisingly few of them take up.  I’m not too disappointed though, as the group who do arrive mean the afternoon is passes in an intimate chat about organ donation and the amazing gift of life – both Pops and I relaying our various personal stories of transplant (her brother being a heart-recipient 2 years ago), with interjections from various people in the group to ask questions or find out what more they can do to help.  In any of the talks of events I do, however formal or informal, I always feel that if one person goes away and talks to someone else, or signs someone up to the ODR, then it’s been a worthwhile use of my time and that’s exactly how I feel as K and I walk away from the Castle to shoot back to the college to change for the main event of the evening.

The Hatfield College Charity Fashion show is an annual event that is run entirely by students (as the Master of the College’s wife was so keen to inform us).  Having never been to a fashion show before, I have no idea what to expect, but manage to take the majority of it in my stride.  Sitting on top table as guests of honour (well, of the Chancellor, anyway), we are afforded one of the best views in the house, which is only a little uncomfortable when watching the La Senza section as the barely-out-of-their-teens models (my God, I sound old) parade themselves mere inches from their Chancellor’s face.  I’ve no idea what he’s thinking, but I don’t know where to look, so take to alternately bitching with Pops and K, sitting either side of me.

The main highlight of the evening (apart from a 3-item attempt at an auction, which included dinner with one of the male models) is the group photo after the fact with all the models in My Friend Oli t-shirts, myself and Bill.  Promotion/attention seeking as I am, I have high hopes that the free t-shirts will be worn and talked about all over Durham and the photos will find their way into as many student publications as  Alice and Pops can persuade.

Torn between wanting to experience a night out in Durham and the fact that we haven’t managed the rest we needed during the day, K and I finally decide we don’t want to push it too far, so after saying our farewells to Bill, who will from here on out be detained on Uni duties and too busy for the campaign (we have spent our allotted day of his time, which is more closely guarded than many a club door on a Saturday night) , we head back to the college to crash out, which we do by 11pm. 

Was back at Harefield today for my first clinic flying solo. Up to now I’ve been along with Mum or Dad and maybe K in tow, too, but now I’m more mobile and – more to the point – can drive myself comfortably for an hour or more (just), I can finally let Ma and Pa go about their usual daily business. In other words, they have to stop skiving off work to run me to the hossie.

What was even better about today (barring all the medical stuff, which I’ll come to in a bit) was that after our experiment with popping into Town last week, I took myself off on the train after the morning tests and got to have lunch with a really old school mate, who’s working for a record label near Archway. It was brilliant to see him and catch up – both of us feeling really happy about our lot in life at the moment, which not only makes a change (for me, anyway) but makes for a refreshingly up-beat and happy little luncheon.

Back at the big H, I saw the main man himself for the first time in a few weeks, which apparently worried him, because you only normally get passed to him if there’s something wrong.

As it happens, there’s not – he’s even given me such a clean(ish) bill of health I don’t have to go back for four weeks(!), barring unseen complications on my part. It’s amazing to think that just 3 months post-transplant, I’m already in a place where my docs are happy for me to stay away for such a prolonged period of time.

The down-side to it is that my lung-function doesn’t appear to be following the usually predicted improvement curve that he would be expecting to see at this stage. Whether this is left-overs from the Organising Pneumonia or signs of something potentially more sinister, he’s not sure.

The big issue with the O.P. is that it can take a long time to resolve (hence the 6 weeks of high-dose oral steroids I’m on at the moment), which means it’s pretty hard to detect if there’s anything else happening. The good news is that the biopsy from my bronch a couple of weeks ago is definitely negative for any signs of rejection and there is also very little or no sign of infection, which are the two main dangers right now.

More likely than not, the plateau in my lung function is a by-product of the O.P. and as that clears up over the next few weeks, my lung function should start to creep back up towards the predicted curve that they would hope and expect to see. Going to the gym and getting more exercise, putting weight on and generally getting stronger should all help that. Since it’s a bit of a waiting game to see how it progresses, that’s why they are happy for me to head off until the steroid course finishes and they can have a proper look to see if everything’s resolved.

For the time being, he’s kept me on some oral antibiotics and added in a second immunosuppressant to try to discourage rejection should there be any lurking or even thinking about having a bit of a lurk. It does make me mildly more susceptible to colds and infections and things, but not to such a degree that it should mess with too many of my plans. The main thing is I can still go to the movies…

All in all – beyond the slight concerns over the plateau – it’s been a good day hossie-wise. In terms of independence and self-confidence, it’s been even better. For the first time since my transplant, I really feel like I’m fending for myself and reaching a level of true independence and it feels amazing. I’ve not known this kind of freedom for a really long time and boy is it good to have it back.