I was thoroughly unimpressed by now. I had had a reading that had been ridiculously high much earlier in the year, had a re-test, and then it was fine. I explained this to them and was told that one of the SHOs was coming to talk to me. She arrived and I asked jokingly if she’d come to give me good news and she replied cautiously “I’ve come to talk to you.” She went on to explain that the un-recordable reading (which I’d automatically assumed was too high) was actually far too low. That it showed hardly any presence of Cyclosporin in my blood. She looked at me, somewhat nervously and said as firmly as she could “we need to know if you have stopped taking your medication.”
What I should have been able to do is casually laugh and gently reassure her that there’s no way I’d ever be that stupid but I was so shocked that my stomach flipped and I felt tears gathering in my eyes. I couldn’t believe they would think that of me. She went on to say that obviously they hoped this was highly unlikely but a sudden drop in lung function coupled with these blood results did begin to look suspicious.
Just to reassure anyone who may have any doubts, I would never ever stop taking my immunosuppressants. They are keeping me alive. They are keeping these lungs healthy. A handful of tablets morning and evening are allowing me to live a normal life. To stop taking them would be suicide.
I started babbling, feeling like I needed to prove myself to this doctor, who was very kind but didn’t know me at all. She explained that if I did have no cyclosporin in my blood they’d put me on an infusion straight away to get the levels back up. This helped clear my mind a bit – I knew there was no way the blood test could be correct and whatever the evidence might suggest it was not true. As she went to discuss it with another doctor, I phoned A tearfully, just to check that he hadn’t notice me miss any doses either. He reassured me that I know I haven’t and I got myself together and went to speak to the doctor.
I told her again that I’d never do that and due to the fact the level was so low (suggesting I’d stopped taking them for some period of time) I was convinced this was a dud reading so I would refuse the infusion for fear of further damage to my kidneys if they did suggest it. Luckily she said the other doctor had agreed that if I said I hadn’t stopped they couldn’t believe I’d ever do that either and it was suggested I return for a repeat blood test early the next morning.
This was all I needed to hear – they didn’t believe I’d ever treat my new lungs with that contempt. I was so relieved. I ran out of the hospital (forgetting to collect the inhaler in my haste) before anyone could change their minds and headed home for a good nights sleep. The next morning I whizzed back up bright and early, had the bloods (which they rushed through so I could go again if it was fine which I thought was lovely) and sure enough around 9am was told the level was absolutely fine.
I have no problems at all with the way the hospital dealt with this – I think they were cautious and thorough. If I was a doctor greeted with reduced lung function + no cyclosporin in blood level I’d have to come to that conclusion as a possibility too. Every move they made was for the safety of me and my lungs. As for the initial result (which must have been a dud reading) I’m just glad that it’s all ok now and mix ups must happen in the labs sometimes so no one is to blame.
As I say it was a strange few days. The inhaler has been fantastic and my lung func is nearly back to normal. My cold is also well on its way out. It’s not long till Christmas now (wooo!) and hopefully that will be the end of my mini-drama and I can focus on work and on festive preparations. Now if you want to read a real thriller of a story, take a look at Sarah’s blog, where she is detailing the incredible events in the run up to William’s Transplant.
Thanks again for all your lovely wishes and big yay for being at home.
Update to say there is no update!
1 week ago