Home on my 9 month anniversary

I made it out, and on my 9 month transplant anniversary too. My sugars seemed to be more under control yesterday and so far even more so today, and my lung function is gradually improving - I'm only about 10% under my best, or normal, levels now. I woke up at 3am last night with a slightly worrying rattle in my left lung, got up and did a few 'huffs', or forced expirations, and eventually coughed up a blob of blood about the size of a 5p piece. A bit disconcerting, but a very normal result of having a biopsy of the lung. I mentioned it to Jas this morning and he didn't seem to worry.

So I was sent home with a blood glucose monitor and finger pricker (ouch!), as well as an insulin pen and some tiny little needles. They want me to monitor my sugars four times a day - when I get up, before lunch, before dinner and last thing at night - and if before lunch or dinner it is higher than 8 mmol/litre to give myself a little shot of insulin. So far today all my readings have been normal, so no insulin required and hopefully things will continue to improve as the steroid pills are tapered off over the next week.

Still, I guess it is useful to get the training out of the way with the diabetes stuff before it becomes a permanent feature of my post-transplant life as no doubt it will, especially if they at some point decide to change my Neoral (cyclosporin) to Tacrolimus, which sends virtually everyone that way.

Now for a relaxing weekend...

Still in here

Another day in paradise...

Jas was back and on the ward round this morning. That man certainly calls a spade a spade which I guess is good but can also be scary. "your gut may just be colonised with campylobacter now", "we might want to do a colonoscopy if it comes back". And other gems.

I'm finding dealing with variable blood sugars really hard from a mental perspective - I'm really hoping it settles although it seems everyone turns diabetic on the immunosuppression eventually, especially CFers who are more prone anyway. It seems to have been a bit better today and I haven't had any insulin yet.

My lung function was very slightly up this morning although I was very tight on my upper airway - there was almost a whistle as I breathed in. Things got better through the day and I tried my blows again this afternoon and got a good improvement - now back to around 10% down on my best.

So I'm hoping that these two things combined will get me an honourable discharge tomorrow and I can try and get back to normal life.

The last thing is that I repeated my concerns over the delay in getting even an appt to discuss the fundoplication with Jas and when the transplant coordinator chap popped round at 4pm he said they'd talked to Addenbrookes today and an appt is in the post for me! He has some influence that Jas Parmer...


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'minimal A1'

That then is the bronch diagnosis. Those of you with long memories may remember I had some A1 rejection fairly soon after the transplant and they treated it with raised oral steroids for a while. In this case we don't and can't know whether it was major rejection before the IV pred or minor + cold. Still, minimal A1 is a as minor as it could possibly be so I guess that's good. My blows still aren't up to much so I'm sure the virus is having an effect too.

The treatment plan is to do around three more days of 30mg oral pred and then taper it off, and re-FOB me at some point to check the rejection is fully clear. Full details to follow at the ward round tomorrow morning. Hoping for a discharge in the morning.

Here's us by the pond. Nice day.


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Bronchage

Had my bronch this afternoon and have been gently expectorating blood ever since, as is the way when they cut 5 bits out of your left lung. They didn't seem to give me as much sedation as sometimes as I felt the probe going in and heard the 'open' 'close' commands of the biopsies being taken and certainly felt the probe coming out.

Got a raised temp and heart rate of 110 for a while after the procedure bit that seems to have largely settled.

The doc said there was no sign of infection but my trachea was inflamed which could be down to aspiration of tummy juices from reflux - damn them, I need that fundoplication. I am genuinely quite annoyed if the waiting lists and doctors not getting organised and referring me to london if necessary is causing me lung damage already...! I'll have words with the doctor in the morning when I'm feeling less tired and woozy.

So, tomorrow evening I'll learn whether there is any rejection and that will dictate the treatment plan henceforth. I really just want to get back to feeling fit, going to the gym and being normal again.


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Rejection...or just a cold

Interesting little chat with the doc: seems I came up positive for Rhinovirus, otherwise known as a cold. So it's possible, as rejection was never actually diagnosed by a bronch, that I just had an upper airway viral infection. Still, he's planning to follow through with the last steroid dose and bronch me tomorrow.

Seems also the steroids have pushed me borderline diabetic, as they can. I had a blood sugar of 19 this morning (normal 6 to 7) so they are going to test me every so often and give me insulin jabs if I go above 15. My pre-dinner test was 15.3 so they didn't treat it. Bit borderline. Apparently things usually, but not always, revert to ok once the steroids stop.

My hope is that I don't end up diabetic because of a steroid treatment I never really needed because all I had was a cold. That's the worst case scenario...


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What a nice setting for a hospital

Just taking a brisk walk around the grounds and thought I should share what a lovely and unusual setting for a hospital Papworth has. It'll be a pity when it moves to the Addenbrookes site in Cambridge, but that's not till 2013 or maybe now even later with the state of the public finances...

Here's a view from the parkland with the big house on the left that's used for hosp admin and the pond, which you'll know well if you've been reading since I was transplanted, down to the right.


Here's the pond and the red brick building behind is Mallard ward where I was in the 3 weeks post surgery.



So guess I'd better get back to my room in case anyone wants me. I'll probably write again soon as there isn't much else to relieve the boredom!

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1 down, 2 to go

I managed to get about six hours sleep, which isn't really any less than you'd expect from the first night in hospital with the unfamiliar bed and ward sounds (thank god for ear plugs!)

My blows this morning had shown a reversal and are back up to Saturday's level. If tomorrow is like Friday then we are definitely on the right track back to health...

I saw the docs and they confirmed they will do the three doses very probably and will do the FOB on Tuesday. So by Weds pm I'll know what level of rejection remains after the steroid treatment. After they stop the IVs they will switch me to a high dose of oral prednisilone (prob 60mg). The amount of rejection the FOB shows will dictate the speed that they taper off the oral steroids.

They moved me this morning from the ward to a room I can call my own. Room 13 Baron Ward.


Look - I get a little TV, a nice big window and even access onto the balcony where I can get just enough of a smidgen of mobile reception to send this post.

Onwards and upwards...

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The joy of steroids

Well there was no change on the xray and no sign of infection in the blood test so they decided to start the methyl prednisilone IV. Three daily infusions of 700mg. Had my first this evening and no side effects other than a bit of a euphoric buzz and a funny bitter taste in the mouth. We will see how I go and I guess they will probably FOB me after the treatment to check the rejection has gone.

The other side effect of pred is lack of sleep so, combined with the noises of a hospital ward, I'm not expecting much tonight. Vicky brought me my laptop and the box set of the first series of the wire which I was wanting to re-watch anyway, so tonight may be a Wire marathon...

I'm standing outside the hospital writing this as I can only get phone reception outside so I'd better post it and get back to the waterproof sheets and hard pillows.


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Location:Papworth

Rejection?

I went to Papworth on Friday as my lung function was down by a little under 10%. Enough for me to worry. They did a barrage of tests - X-ray, nasal vacuum tube thing (most unpleasant) to look for viruses, I tried to produce a sputum sample, some blood tests. They found a doc and he provisionally booked me in for a FOB on Thurs next week in case of rejection.

We went off to Norfolk to visit my mum and yesterday the blows had dropped again and today more so - they are 20% down now, and it is starting to hit my FVC as well as FEV1. Temp is fine, don't feel ill, still have 98/99% O2 at rest and pulse this morning was 58!

I rang the transplant doctor on call at Papworth and he's going to ring me back once he's spoken to the on-call consultant. He said it sounds like we need to start things sooner rather than later. Sounds like he thinks it is rejection.

Other possibilities: Upper airway infection - either viral or bacterial. Strange reaction to Azithromycin - I'm on this antibiotic to treat the re-emergence of campylorbacter and I'm just thinking that last time I had a dip in lung function and was almost FOB'd it may have coincided with the course of Azith following the original campylorbacter bout. Just my pet theory.

We will only know after they FOB me and at current pace of decline I'd rather that was soon!

Campylobacter....the return

Over the last month or so I've never quite felt right in the guts - pretty much ever since the awful Campylobacter episode. I have felt bunged up, and then loose. It's not been very pretty. About a day every week I've had an unexplained slightly raised temperature, usually accompanied by tummy pain. I was wondering if it was just mis-management of Creon (the pill that digests food for me) and discussed it at length with the dietician at my CF annual review.

Eventually Vicky, being a very sensible wife, persuaded me to go to the GP and do another stool sample, just in case. I've just had a call saying that the campylobacter is still there. Well, that'll explain the symptoms then.

I rang Papworth and they said to use Azithromycin again as the antibiotic of choice, as the other two options can affect the immunosuppression levels. One of the side effects of the Azithromycin last time was really nasty tinnitus...so here goes with another 10 days of that.

The nurse at Papworth also said that she had a friend who had campylobacter and it kept on coming back. Not terribly reassuring!

Thou shalt stay away from building sites...

... which is all very well until your next door neighbour decides to build an enormous extension. I, predictably, am anxious about the dust and the fungal spores and Will's lungs. We've talked to the neighbour and the builder and our letting agent and our landlord and everyone is being very decent and we've agreed working hours and basic principles and compensation etc etc. But nothing gets away from the fact that they are still pulling down walls and ceilings and dicking around with soil and rubble, right outside our kitchen door:

Our garden on the left, neighbour's on the right

So my plan was to keep the doors and windows on that side of the house closed pretty much throughout. This has been scuppered by the HEAT. Cambridge is a swirling mass of matching-backpack-clad foreign language students; as they mill and shriek their scantily-clad way around town, we locals sweat to and from work on our bicycles, crumpled and overdressed for the unseasonable weather. Oh to be 14 again. So I've had to relent on the kitchen door a couple of times - it is just too hot to be in there otherwise. Which means, of course, that I am back to being anxious about those spores... Hey ho...

CF Annual Review

The way it works at Papworth hospital is that at the point of transplant you are handed over from the CF team to the transplant continuing care team. The CF crew have done all they can for those poor old scarred and clogged up lungs and once they are out of the picture, so to speak, it's more about looking after the new set and the Transplant team are the experts there.

There are, of course, the other aspects of CF: Digestion, possible onset of diabetes, liver disease, bone density and so on. To keep an eye on all of these bits the CF team continue with the annual reviews, where they do every test under the sun - a full annual MOT. Today I went for this year's.

Needless to say, my blows were a lot better than last year. A LOT. They produce a graph showing your % predicted (for your height, gender and age) FEV1 (1 second forced expired volume) from every CF clinic visit since records began, which for me is the last 15 years. That's quite a lot of data. It is actually remarkably interesting, especially if you're a bit of a spod like me, so I've copied it in below with some arrows to interesting events, and some explanation (click on the graph to enlarge):

So interesting things to note:

• I never had above 50% FEV1 from the age of 20 (in 1995), until now!
• The introduction of DNase is understandable when you look at the gradual decline over the previous two years
• I used to really bounce straight back from infections - look at the first University one, and the Africa one - later on with the nasty infections I took a step down each time and never really got the lung function back. In the old days the antibiotics really worked - it was the infection hitting the lung function - clear the crap, suddenly you can breathe again. Later on the underlying lung damage was prevalent and didn't allow me to recover.
• The Africa trip was a fabulous month of messing around in East Africa, and I thought the risk of not taking DNase with me (how do you keep it refrigerated when backpacking??) would be worth taking....er...no! I've never quite understood how I survived the flight home from Zanzibar - let's just say I don't remember much of it and was probably in a hypoxic stupor...
• Starting the nebulised antibiotics gave me a lot of stability - see how the variation in lung function between visits is markedly reduced? It gave me a good 4-5 years extra time.
• 'Aint it just the coolest jump up in lung function at the end? 20% predicted to 90% in one hit!

So, go and sign up for the donor register, because this really works and a lot more people deserve to get transplants than currently do.