4.9.18

Broken...

I think my body has officially decided to completely break. It's hit the metaphorical meltdown button and can't seem to return to a functioning order. For those who don't follow me on Instagram, Twitter or Facebook and are unaware of the current situation, well, my lung collapsed.... AGAIN! The bloody thing decided that it wasn't having enough fun functioning like the crappy thing it already is and thought "hey maybe I should collapse again whilst Stacies sister, husband and nephew visit..." I can honestly say collapsed lung has to be one the few experiences in my life that I really truly don't want to have another repeat of it is so terrible for me and I really don't like it. 

This time I had, had a lovely day with my twinny and yes I had probably done a bit more than I had done over the previous few days but nothing I would consider 'pushing it.' we all decided to sit down and watch a movie whilst Jenson was getting to sleep which is when "it" happened. I stood up from the sofa and then I felt a pull in my chest so I thought okay this could just be a pulled muscle so we gave it a few minutes and then I knew it wasn't, the sensation started to spread throughout my chest and my breathing became extremely laboured within a matter of moments. I think it took 5 minutes between the initial 'pull' feeling to us saying "lets go to A&E" and off we went. We literally got to A&E within 10 minutes of leaving and although there was a massive line waiting to be seen by the desk Mark and Megan just pushed me straight on past until we came into contact with a nurse/doctor and we just said "I have a collapsed lung. I need 15litres of oxygen now" I got pushed straight on into Resus and dealt with immediately. The bit I found the most amusing though was a Dr who wasn't very impressed that we hadn't rung an ambulance, I mean how ridiculous why would we have rung an ambulance when we could have ended up waiting longer for an ambulance to arrive at the apartment and do all it's bits and bobs than it took for us to drive up there and basically have the drain in? Exactly we did the sensible thing, especially as we knew what the situation was so we knew this was the quicker, easier, more sensible option, I think that articular Dr just prefers protocol to be met and being seen within a few minutes on A&E is not regular protocol.

I officially had my second drain placed and it was even worse than the first time, The woman doing it, as good as I'm sure she was, was doing it under stressful and emergency circumstances which meant emotions were high everyone was on very high alert and i just don't think it was done the best it possibly could have been. There was A LOT of screaming on my part and even after they had got the drain in I was still screaming out in pain as it still hurt intensely. I'm told this is where the lung was expanding and was creating more pain plus having another drain in so quickly after the previous one has meant some nerve damage all creating a not very nice scenario for me. It eventually calmed down though but I can honestly say tiredness can also be the worst thing about these situations as well. Mark and I were basically delirious from lack of sleep. We were in the Norfolk and Norwich Thursday evening and managed to get out of there by Friday afternoon. This was after Mark and I threatened to leave and come to Papworth under our own steam. Normally we're very patient patients but unfortunately this just was not the day to pretend or lie to us. They told us Transport would be between 1-4 hours and then when it hit the 4 hour mark and they said there was a 2 hour delay we had just had enough, it was what happened the previous time we were there and we ended up waiting 24hours for the transport and we were not in the position where we were going to do that again. So we packed up all of our stuff got me in my wheelchair, pump bucket in tow and we were about to leave when a nurse caught us :-/. When they realised what we were doing low and behold there was a transport just downstairs.... tah dar lol! 

I got to Papworth and I really do just feel like I've arrived home, I feel like i'm with friends I'm with people I trust. The past few days have been stressful for me though, I honestly didn't think I would have to have another drain put in but unfortunately the drain that was placed in to get my lung back up although it did the job it wasn't in the best place/position for the "blood patch" procedure they wanted to do. So it was decided to remove that drain and replace it with a new one. To say I wasn't best pleased really is a understatement the terror that went through me at the mere mention of this is was massive. Then I had lots of people telling me that this time it would be SO much better because it was being done by a surgeon who's bread and butter was chest drains. They all LIED well and truly LIED! I don't think they meant to but ultimately they did. Firstly removing the first drain became more of an issue than it was supposed to and they just couldn't get it out smoothly enough. Then when they finally had and it was time to insert the next drain, the drain insertion wasn't too bad it was the after effects that were terrible, sooooooooo much pain and it just didn't go away at all. They gave me a tonne of morphine, zormorph, codeine and iv paracetamol and even those didn't quite cut it. 

Then on Sunday evening I woke up and my neck, my boob, stomach and arm had all blown up and was inflated by escaped air from my body! It is so uncomfortable and my boob feels like it has just had the worst boob job ever, it's super hard and also when you press it it feels somewhat like a bean bag. My arm feels really heavy, definitely have a tonne of pressure in my throat as well and my stomach is like semi-pregnant woman LOL.... 

~          ~          ~          ~         ~          ~ Small interlude ~          ~          ~          ~          ~          ~

So I took a small break writing that post up there ^ ^ ^ and had totally planned on continuing to write it but in the course of that my Lung decided the collapse YET AGAIN! So lets continue shall we... 

After getting the surgical emphacema in my chest (trapped air in my muscles) it was all considered fine, it's just something that sometimes happens when having chest drains inserted and it slowly disappears by itself being reabsorbed by the body and being released thank goodness. We proceeded with the Blood Patch as planned after a day or two and that went as smoothly as it could have possibly have gone although my arm was being a bit annoying and not wanting to give any blood but we got there and it happened, I was so happy that it was all finally done and I would be able to go home with hopefully a co-operating lung.

So Saturday the 26th of August came and I was allowed home to see my baby and hopefully get back to mine and Mark's normal way of living minus collapsed lungs. We had a really lovely evening and I felt quite calm considering everything and I was just so happy to see my Marzuki who seem just as happy to see me too. I got to get in to our own bed which was amazing and cuddle my wonderful human all night and it really is just these things I miss whilst I'm in hospital. Okay it's nice to have a bed to yourself sometimes but when there are times that all you want is a cuddle or just that someone to tell you that actually everything is fine and the mean things that lurk in the dark aren't going to get you, you can't get that in hospital, the mean things that lurk ARE there and they definitely could get you. But that's what I got for one night i got my human, I felt safe and it was just lovely. 

Sunday morning was of no particular interest, the day plan was literally to REST, end of, and I kind of wish I had just stayed asleep but a body being a body I needed the toilet and so had to get up and go for the toilet. At that point I saw no reason to go back up stairs so me and Mark started to sort my drugs out on the dining room table but I was feeing what I would call a fluttering under my ribs which was definitely a newish sensation for me and only a sensation I had felt whilst having a drain in and air bing released into a bucket. I decided to stop sorting them out and sit on the sofa where my breathing had started to become a bit laboured but I was questioning whether I was just having a panic attack or not which would be reasonable I've been through a lot and truly am very unsure of my body nowadays so anything could probably trigger me. Mark had continued with my drugs hoping that i could distract myself with it, I couldn't. Now i decided it was time to make a move somewhere but where? was the question. We had a bed reserved at Papworth till Tuesday over the bank holiday weekend in case anything happened but could I make it there or did we call 999. It got to a point where I was so panicked and out of my head with worry that I wet myself (side affect of panic attacks that i've now had the pleasure of experiencing :-/), I was completely out of control of myself and unable to breathe, so Papworth was not the answer there was no way we'd get there so Mark ever my gallant savour was on the case and we had a ambulance to us with 5-10 minutes. Credit to the guys they basically decided I was way out the range of expertise and not even going to bother doing anything more than basic obs and just wanted to get me to the A&E where I was shuffled into RESUS immediately. 

Collapsed lung was diagnosed pretty much the second we got there x-ray confirmed it and they were putting a drain in pretty asap. Now this being the FOURTH drain in 3 weeks I have very little room on my side for drains so the guy had a tricky job of having to avoid my spleen whilst trying to insert the drain as he was further down than he would have liked. All praise to the man out of the four drains his insertion has to have been the best and least painful, that is NOT to say that it wasn't painful because it fucking WAS, drain insertion is hell on earth and anyone who says otherwise is a maniac! Once again me and Mark were running on no energy and I was delirious from exhaustion yet again. We were moved to ward where they had clearly nougat a clue about who they were receiving because they were about to put me on a ward bay with 5 elderly lung problem women, bad move. I started by saying you know "excuse me, but I'm immuno-supressed I can't be here" normally a bay can be fine but these were so squished together i felt like any infection could leap from one bed to the next they were that close but they replied with "oh no it's fine we've checked your bloods, you should be ok." Me and Mark were of the same mind, they clearly didn't care about me catching anything but they might care about these elderly women catching something so we allowed them to get me in the bay and settle me into a bed whereby they were then informed of my current and active aspergillous and pseudomonas which they were unaware of to this point as clearly no-one had read my notes properly. Immediately it was obvious to the head nurse that I could not stay here not because she was afraid of me catching something but me spreading my infections to her five elderly patients. I was swiftly moved the a side room thank heavens :) where I stayed until Tuesday. The care this time around was not great to be honest I'm high and regular doses of pain medications that they were regularly late with and it became frustrating i was so pleased to leave. 

Tuesday 28th August I was moved to Papworth back into one of my regular haunts in room 16 which has become quite the cosy hole for me. We've basically just been waiting all week and coming up with a plan of what to do. It was decided that surgery was the best option, it really is the only option remaining and failing that nothing has been discussed beyond yet. I have a lovely surgeon who will be performing the procedure and he is considered the 'best in the west' because he specialises in this particular field of surgery and is used to dealing on the most delicate of people and their delicate lungs. I certainly help by being a bit chunkier and not a minuscule size, that's always a benefit when it comes to operations. People seem positive but then again I wouldn't expect them not to be that would be weird turning up to people completely unsure of what they were about to perform 

Okay so tonight is the night before the OP and I'm nervous but Great British Bake Off is about to come on and I can think of nothing better to distract me from my stress and my risky operation than GBBO. Wish me luck for tomorrow and hopefully the next time i speak to you I'll have a lung that wants to do as it's told :)
    
As always, thank-you for reading and chat soon