Monday, November 24, 2008

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.


Alice Vogt said...

Phew that's a relief!!!! Very happy for you hun!

Anonymous said...

I know exactly what you mean EMily! When you know your reaction is making you look guilty even tho you are completely innocent. Glad you're home and all better
Lindy x

Jac said...

Yay to being home and on the mend :-) :-)

higs xx

Anonymous said...

I'm SO pleased things turned out good in the end. I could NEVER in a million years think you were not taking your meds Em, it would be so silly plus I know how hard you had things before your TX so why would you put yourself at that risk. Doctors have a good why of making you feel guilty even when your not.Put this one to experience and laugh it off now, your a Stat and always will be

Anonymous said...

Sure soo frustrating for you Emily sometimes can just have'freak' results far too high or 2 low with Tac levels had similar before ahen Drs ask if taking too many but was build up of them so Drs had to juggle to resduce Tac...such a juggling act at times.Sure as you say no way you would ever stop taking immunosupressants as come so far to get where you are today to routinely take all meds and everything Drs give post transplant patients etc...

Also appreciate Drs DO have a responsability to ask to ask too. Know bloods have been mixed up before in hospital(wrong labels applied)! post transplant and given someone elses creatanine levels who was on dialysis hence sky high when was actually low dooohhh :O. Lessons learnt!

anyhow so so glad you escaped hospital and no doubt jumping for joy.....

take care and thinking of you Elaine & Rach xx

Anonymous said...

So glad to hear you're home and back on track.
That must have been really upsetting for you but I suppose doctors must deal with all sorts and they obviously didn't know you very well!
I do find it funny (kind of) that suicide for us is NOT taking a handful of pills.
Audrey xx

Jen said...

hey Em,
must have been a shock to hear the dud result - glad its all sorted and you are feeling better after using the inhaler. lots of love xx

Jess said...

I am relieved you are home and feeling better!

Hope said...

thank you for the lovely comment on my blog. i think your blog is interesting too. i especially like the talking in the backround.