Not much sleep again.
I do my physio and think I’ll lay back down again for a kip. But I have a coughing fit and I’m just panting trying to get my breath back. You see I’m used to this from the old days and I was just literally breathing it out – but my nurse looking after me came to see the other patient then saw me struggling.
So there was little bit of panicking, as the nurse explained to me later, I was taking a very long time for my oxygen saturation to come back up. We found also that on most machines, my fingers weren't reading well or very truthfully. So we started using an ear probe instead. Just clip it on where your earrings go.
I did another nebuliser in the meantime – and the nurse (with a few other nurses staying around in case got worse again) called my registrar. The registrar ordered another X-ray (they have amazing X-ray machines that are mobile, so when you are really sick, they can just come to you) and also my physio came to see what was happening.
I worked with the physio (with a student watching) for a while, and I was desaturating whenever I coughed (after or during a neb or from doing my Bubble Pep) as my airways were closing down.
One of the physios would talk me through purse lip breathing, which helps to relax the airways and open them again.
I got the tears out after about 3 rounds of this – mostly from exhaustion I think!
My registrar thought it best to do a bronchoscopy, to see if they could get a better understanding of what was going on in my lungs. They could do that the next day so that was good, I wanted them to find out too! I didn’t realise until later, that they were doing it on the ward, not at the Alfred Centre.
On the ward, they only use light sedation, and at my 2nd last Bronch as you may remember, I was moving around and coughing a lot, so I got my marching orders to be bronched at the Alfred Centre from thereon.
I was pretty unwell from my last Bronch on the ward, so I thought that was a good idea, I must have gotten pretty punched up in there, with all my coughing and moving around!!
The nurse said to me they’d shift me to a single room for some more peace and rest – as it turned out, my neighbour was leaving that day, but no one else came in.
A fungus had turned up in my sputum called Aspergillus. I was already familiar with this bug from my CF days. It could be causing the infection, but they still don’t know, so I get given another oral anti to take.
You have to fast from midnight for Bronchs (and most other procedures involving anaesthetic) – the food I was fine about, but gee I was thirsty. I had been drinking a lot of water each night through the nights, so obviously when you can’t have something that’s all you think about – haha!
I had to resort to swirling it in my mouth and spitting it out. I think my fevers were having something to do with me wanting extra fluids during the night.
I managed to get some sleep – still interrupted and not deep, but it was sleep!
When it was Bronch time, I was wheel chaired down to the other end of the ward. Before the procedure, you have to inhale this revolting stuff to help numb your throat. I always try not to swallow as that is when you really taste it (Melanie, it was would so make you gag!) lol
You breathe in that joy stuff for about 15 minutes.
I was then wheeled in to the procedure room and hopped on a trolley - quick chat to the doc (who I knew which was nice) – and then I was put to sleep. I did tell them that the last one I had was difficult and they said no worries we can pin you down…. (chortle chortle)…
I wake up with the old cliché saying of “a sea of faces” – and said, “what happened” as I realised they had a little puffer thingy (I just googled it to see what it's called and it's a Bag Valve Mask) helping me to breath.
They said they had to abort as I was coughing too much and desaturating – and that they nearly needed to call the crash cart (I don’t really know what that involves but it's a resusitation thingy!)
Well I told ya so - I say in my head!! Lol
They only managed to see the top half of the right lung, which had gunk and give it a wash to get a sample, so hopefully they can gain something from that.
Later on the docs said they would try again at the Alfred Centre on Tuesday.
I didn’t feel too bad afterwards, just very woozy. In the afternoon I worked with my old CF physio (all the staff are great, but familiar faces are even better!) and I asked could I do a walk around the ward. So it was with 4 litres of oxygen but I made it round.
Because of the past few bad days the night duty nurse was going to have to come in a bit during the night, to keep on eye on my saturations.
I have steadily lost another 3 kgs on top of 3kgs I had already lost, so I thought I had better start eating things I don’t normally to help with the weight. So I had ice- cream and it felt very odd and naughty! I’m not really interested in food at all, so I have to really force it down. Breakfast seems to be the easiest at the moment.
I dreamt there were three cute old ladies sitting on the bed near mine, like they were having a picnic – but very quiet. I wonder if there are ghosts here, I’ve often wondered!
Anyway, I seemed to have the most sleep since arriving to the Ye Hotel Alf – as predicted I was woken a fair bit by the nurse but I didn’t feel so exhausted.
My breathing felt pretty crap though, so I got on the nebuliser straight away and did some Bubble Pep.
My registrar came around and I asked her about my X-rays – she said that the left lung initially when I came in had been clear, but the latest one showed shadow (infection). She said we have talked to infectious diseases and seen your X-rays and other things, and we both feel satisfied you are on the right meds and covering everything that has shown up so far.
I asked is it normal for healing to be this slow and she said most definitely and particularly being immuno suppressed.
My dietician also visited and we were on the same page about avoiding sugar - it's just too hard when your sick! So I told her I had had my first ice cream...lol!!
After she left, I was thinking about settling for a bit of shut eye, but the w’d physio came – so I worked with her but she didn’t feel very confident with what I was doing because of my desaturating (still) with coughing – so she went off to get another more experienced physio who also works with Cfers.
I’d never met him before but he was very nice, and we did some breath work.
I still got pretty much nada from my lungs, but I felt more comfortable.
I was to do that again this evening.
My sister came during this – before she left, she helped me go for a walk around the ward (still with oxygen) and I must say I have felt brighter and stronger this afternoon. I manage a shower most days but have to sit in a chair…tee hee.
A friend asked me in an email how am I doing as I haven’t mentioned much emotional stuff. In the beginning I was relieved to be having treatment, which then turned to feeling overwhelmed - I’ve been so scared at times on why I haven’t had a turn around. I asked why is this happening to me when I have done everything right – why am I suffering again. I’ve felt exhausted. Other times I’ve felt quite ok. I guess what makes me the most anxious is, when I come out of this, what will be left? Am I going to lose some lung function or will my lung function be ok? And that I'll be even more paranoid of bugs!
So I’ve been meditating a lot to help deal with all this, playing relaxing music and I’m sure all my lovely friends and families prayers are helping me too.
Bye for now Love Genevieve