Up The Farway Tree

6 Month Check up

Well, I will just jump straight in with the good news - I got an excellent report! The bronchoscopy showed much less inflammation in the lungs and absolutely no rejection. Three months ago I had stage 1 rejection (not enough to treat) but this has now gone down to stage zero! My lung function has jumped up to a staggering 97% (Fev1 2.74L). I have a feeling I may be forever chasing the elusive 3% ;-) My chest x-ray, apart from the wires holding my sternum together, is completely normal and my oxygen saturation levels are 100%. My weight has held steady and they seem happy enough with that. My blood pressure was perfect (high blood pressure can be a problem post transplant due to medications) and all my bloods were normal. Now if that doesn't deserve a massive gold shiny star then I don't know what does :-) The doctor said it was my best report to date and he seemed very pleased indeed. I have to go back in 8 weeks for a check up. I would have been allowed longer based on that report if it hadn't been for the early episode of rejection..but better to play safe.

I did mention the problem with sore knee joints, which keeps flaring up. He agrees that it is most likely CF related joint pain and would expect the immunosuppressants to help with this, however it might just be because I have been walking a lot...so this should settle down with time. The reflux is still a bit of a problem but I had my last study of this yesterday (with the nasogastric tube) so I can discuss the report next time I am at clinic.

I had a few problems with the bronchoscopy this time, starting with trying to get IV access. It took an impressive 9 attempts to get a line in (and I had just had three attempts to get bloods before that) and I must admit I was nearly crying by this point, although desperately trying not to! After attempt number seven, I suggested they get a basin of hot water to put my hands in because the room was absolutely freezing, so all my veins were hiding. Thankfully this did help and we finally got a rather precarious venflon in. Then the fun started - mainly due to that fact they could not sedate me enough. Despite 14mg of the sedative medazolam (this is a massive dose!) I was wide awake and talking coherently, mostly saying "Should I be as awake as this?!" I'm not actually sure how I was managing to talk with a mouth guard in and a scope down my throat (although Andrew says it would take more than that to stop me!) The registrar was a bit freaked out, probably by the fact I was staring wide eyed at her as she tried to start the bronch, instead of sleeping as would be expected but they could not safely give me any more medazolam. She was unhappy to continue, especially with me chatting away very lucidly, so they had to call the consultant in. He was a bit perturbed by my behaviour and was more worried I would remember this as a traumatic experience, so he did the bronch as quickly as possible. Back up on the ward I slept for about an hour, before waking and saying to mum "I was just dreaming that the consultant was doing my bronchoscopy, and I was awake and people kept saying I was doing really well, and I was asking when it would be over....but it must have been a dream, because the consultant couldn't have been there!" It wasn't until the next day at clinic when the consultant asked if I had recovered from the day before that I realised it hadn't been a dream and that he had been there! I told him I was very relieved to hear that I had not been having strange dreams about him ;-) I wasn't really that traumatised by it because medazolam affects your memory, so despite the fact I was awake, I only remember it in a dream like way, as if it didn't really happen at all. It is quite surreal. I also realised they must have been rather hasty, as I coughed up a lot of watery blood when I woke up....they do wash outs to check for bugs growing and I swear they must have left 1/2 pint of saline down there! The blood is because they do biopsies (they take quite a few as I am enrolled in numerous studies) but this clears pretty quickly and sometimes I don't get any at all.

After the bronchoscopy, I was trying to convince the nurse that I should actually be allowed home for the night instead of staying in hospital, but they said it was protocol. Pah! Who says you always have to follow protocol?! So I managed to negotiate a couple of hours off the ward instead. I was actually gone for 4 hours but I don't think anyone noticed ;-) We just headed back to mums friends and relaxed and has some dinner. I was so tired from the mornings events that I couldn't have gone anywhere anyway. Once back on the ward, mum had to leave after visiting at 8pm and I was alone with 4 elderly woman in a bay. Well, would the stop talking? Not a chance! Mum had barely left the room when the questions started...'what was I in for' ' Did I have CF' 'Was I 'in education'?' Now, by 'in education' I suspect they meant secondary school or college at a push, so they nearly fell out their beds when I told them I was in fact nearly 30 and married! I decided that saying I was a doctor might finish a couple of them off completely so I just said 'I work in psychiatry'. That was surprising enough for them. As the evening progressed the chatting continued. I got my nebuliser out so they wanted to know what that was and why I was taking it. They then watched me sort out all my medications (transplant patients self medicate on the ward) and then I asked for sterile water so I could make up a saline solution for my sinus wash. So I am sitting there pouring water into this bottle and spooning salt (that I had in a wee tub) into this, before disappearing to the bathroom with it all. I wonder what they thought I was up to? It seemed more amusing to let them wonder. The time ticked on and there was much hilarity, with one of them shouting that they needed a psychiatrist to assess the other one. I kindly informed them that they were all in need of psychiatric assessment but were all probably beyond my help. I then loudly asked the nurse if she would give them all a sleeping tablet so I could get some peace...the nurse agreed that this seemed like a good idea :-) I was also rather amused when the next morning the nurse had to do an inventory of one woman's belongings as she was being moved to ITU after her surgery....it was at this point they found she had 6 cigarette lighters with her. She was only expected to be staying until the weekend! I suspect she had a reserve in case they confiscated one ;-) Ah, the joys of sharing a room...

After clinic yesterday we went up to the ward to try and see my friend Louise, however she just been moved back to ITU so I couldn't visit. I am not sure what has happened but it's rather worrying and at 7 weeks post transplant she shouldn't be back in ITU. There is also another fellow transplant patient (who goes to same CF unit as me) in ITU at the moment. She is 3 1/2 years post transplant but suddenly became unwell 2 weeks ago and has been in ITU since. I bumped into her mum, but there was not any more news at this time, as they are still unsure what is wrong. She is holding steady just now but has a long way to go, so if you can keep them both in your prayers it would be most appreciated. It did really put things into perspective for me, and I am truly grateful that I am doing so well just now and being given the chance to live life to the full. Long may it continue.