...Will Cramer!! Yes, it's an all clear for me on the 12-week bronch and biopsy. The results were 'completely normal' and there was 'no infection'. They seem to refer to infection as a flare up of a bacterial presence so I expect the pseudomonas is still there in some capacity, although I didn't actually ask, so don't know.
In the end they persuaded me to stay the night after the bronch as they wanted to do an X-ray the next day to check for any inadvertent damage to the lungs from poking around and taking biopsies. So I was installed in the RSSC (Respiratory Support and Sleep Centre), where they happened to have a spare bed as the usual Chest Medical wards were full. This is where I used to go for sleep studies when I used the NIPPV ventilator before the transplant, and I think I wrote about my fairly grim experience of one of those studies in the early stages of this blog. After spending lots of time in CF and Transplant wards and clinics, where everyone is doing their very best to look after themselves, it is striking to spend time in RSSC where the majority of patients have smoking-related emphysema or are desperately obese and so have problems breathing. There is a very different feel to the place - it's the 'other side' of NHS care, and feels a lot less positive.
I was second on the list so went down for the bronch around 3pm. I was mid-conversation with Jas about various things while Massoud (Little Mo) busily started injecting the sedative, so my conversational skills got a little hazy as I felt the now familiar numbness and tingling in my feet as the drug took hold. I was awake as they inserted the probe and it was very uncomfortable - I felt like I was choking and coughed a few times - I remember them encouraging me to breathe and heard Jas asking for another 2ml of the sedative. And that's the last thing I remember before being woken at the end of the procedure and getting onto the bed to be wheeled back to the ward. With all that sedative I was straight back to sleep and Vicky tells me I slept soundly for an hour before waking up around 5pm.
Not much else to tell really. I slept pretty well as I was in a side room so was spared the sound of all the other RSSC patients' ventilators whirring. Today was extremely dull. It was dreary and pissing with rain and I had nothing at all to do other than a 5 minute X-ray (Radiologist: "This is supposed to check for pneumothorax, but I think you'd already know if you had one of those"). I went for a walk in the rain, visited the duck pond up by Mallard ward for old times' sake, found it to be mostly frozen over, went back to the ward, messed up the Sudoku in the paper I'd bought, finished my book, watched rubbish daytime tv and waited for the docs to arrive with the results.
This 12-week point is a milestone, as I've pointed out several times, and the all clear result seems to have been a trigger for removal of a few meds. They've stopped Aciclovir (anti-herpes), Colomycin/salbutamol nebulisers (as the infection looks ok), Amiloride (one of the diuretics), Nystatin (anti-thrush). The immunosuppression is also starting to taper off. The prednisilone steroids are reduced to 12.5mg/day from 15mg, with the aim of getting down to 5mg. The Neoral is down to 175mg, 3 times a day, from 200mg, with the aim of reducing it as much as possible over time.
For my whole life pre-transplant I had to do physio in the morning to clear my lungs. 14 years ago I added to the regime of physio and pills my first nebuliser - DNase, a mucus-thinning drug started during my 4th year at University. From then on in it only got more and more onerous with additional nebs, right up to the point pre-transplant where the regime took around an hour. Now, for the first time ever I can just get up and go. Well...pop a few pills, weigh myself, take my temperature, do lung function and go. It's still completely brilliant!
5 weeks ago