4.10.18

Block...


Okay so last time I wrote it was the night before my operation so quite a few weeks ago now, it's actually October 4th now so yep I've been a bit slow on the old informing you guys on what has happened and that is simply because I haven't been able to sit down and write anything. Not that I haven't had the time because I have plenty of time I just find it hard to go over and think about and rehash over again. The whole subject is hard on me and just quite frankly draining. I'm going to try but there probably won't be tonnes of details about you know the little ins and outs. 

So I did have my op in the end and everything went well, it took 3 hours in the operating theatre and unfortunately I did spend a couple of hours in recovery because I woke up in more pain than was to be expected but I was given a lovely little morphine drip that I was able to press every 5 minutes on top of my additional Oramorph and Zomorph pain meds. My thumb was certainly very active for a few days haha. What did they actually do though? Well I was unaware going in exactly what he would do as he himself didn't know until he got in there but what ended up happening was the top lobe of my left lung was stapled and removed as this was the section of my lung that had lots of little "bubbles" (only word to describe them) which were the things that kept popping and making my lung collapse so it was great that these were easily removed but that didn't necessarily fix the problem as there would still be the odd one floating around the lung that could cause future collapses. However the top left lobe of my lung also housed my Aspergillious fungus ball/cavity and my surgeon being the clever little noggin he is managed to remove it now this is great news but did cause further issues down the line as it upset a few family members (more on that later.) In addition to the section removal he had to remove some of my lung lining and then they applied the Talc which essentially irritates the lung and creates a reaction where it sticks the lung to the chest cavity wall. Everything seemed to go well and so far it seems to have fixed the problem. 

Now aside from my surgery going well I am still recovering it was a BIG surgery and ribs and chest muscles are some of the most painful parts of the body to heal so it takes a while. I mentioned previously that the aspergillious cavity was removed in the process and this did happen and is great news but this led to a fair bit of upset amongst not just me but my family and led to a lot of discussion for the Papworth team and national committee because my aspergillious ball was a big reason why I wasn't allowed to have a second transplant. I personally didn't allow myself to even think that the removal of the cavity would now allow me to go back on the list because I knew there were just so many other reasons why I wasn't allowed the transplant initially that the removal of just this one wasn't going to make very much difference at all. Papworth being amazing though kept bringing my case back to the table to see if they should reconsider it but still it really just isn't an option for me the risks involved would more than likely result in my death. I'm known for taking risks and i will take risks if I think I can beat the odds but honestly the amount of time I've personally gone through this in my own head I can't see a way that I would survive or having another transplant and it actually improving my quality of life and because of what they would have to do there would be a great chance of me being worse with so many potential problems post that the risk just isn't worth it for me and ultimately it would end up being a total waste of organs. Also I would have to find a surgeon and a team willing to perform it which at the moment there is not and even if I could find one I would still then have to get past the National committee who have already said no and even by some miracle they ended up saying yes I would then have to go through "The Wait" again and that would end up being the same as last time and I am probably not going to last 3 years and there would be no chance of being added to any kind of urgent list as I would require both again, it would be a second transplant as well which automatically disqualifies you from any urgent status. Everything ultimately points to no and I'm okay with that I accepted that last year when they said no but it did unfortunately give some hope to a few family members and I think it's sad that they don't get that hope. But as for me I will continue to go on living my life in the lovely way I have. 

I have found it so hard getting over this one, it really has affected me not just physically although I'm sporting massive dents in my side that resemble belly buttons but mentally this has been a huge challenge. I'm normally mentally very tough I get on and never really let things get to me that much but my anxiety has been through the roof with this one. I can't be left alone just incase something happens and getting out and about is really hard for me at the moment. It scares me. I'm so afraid of this happening again, I don't ever want to have a collapsed lung again. There were times when I was mid collapse and in the A+E and I thought "Okay this is it. This is how I'm going to die." and Doctors were genuinely worried that could be the case too we actually had to have the resuscitation talk as in would I like to be resuscitated should I go into ay kind of an arrest? Obviously my answer was always "YES!" but I could see there being a point where actually I might say "no, fuck it" because those experiences were so painful and so extremely exhausting that I couldn't see myself having to put myself through it again especially as they were happening so close to each other. I wasn't being given any chance to recover or given any space from it to be able to forget the pain and exhaustion of the previous one.

I was extremely fortunate to have Mark there through it all though he managed to keep reminding me I have so much to keep going for and how much we still have to do. He got to stay with me the odd night when I needed him and he was always there to give me cuddles and hold my hand through any situation, he really is a one of a kind. That is however another weight on my mind though and that's how awful this is for him. I know I would do exactly the same for him because I love him beyond anything but the fact is I hate having to put him through this and I know I'm not choosing to have bad health or to be dying but it's awful that he's having to watch this happen and sacrificing element of his health to be with me when I was in hospital, it really did affect him as well and I will always be so sorry for that. I just hope whatever happens in the future isn't drawn out or long winded . 

The positive thing though is that I am on the road to recovering from this though albeit not to a full state of health but to hopefully lungs that aren't going to collapse on my every-time I cough or take a breath. It's nearly 4 weeks since the op and I think we're getting back into the swing of normal life again. We're trying to plan things but not so much that we lose a tonne of money if I had to cancel but planning to look forward to things and hanging out with friends. I am being "babysat" a bit LOL by friends because we still find it hard leaving me by myself but Mark still needs to get out and do his stuff and be himself so we try and get a friend to come and keep me company and hang whilst he's able to do what he wants to do. It's difficult but I think we're making it work.          

As always, thank-you for reading and chat soon

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

9.8.18

When your Lung gives up...


It's nice to be writing to you all, I mean really, really nice as I genuinely thought I potentially may not. "Why?" I hear you cry, well I have had a busy two weeks of dealing with this crappy old body of mine as my left lung decided it wanted to collapse, go you body lol. 

It was a boiling hot Sunday of the 29th of July 2018 and I woke up complaining of the weather as I have been doing religiously during this heatwave, so not a particularly unusual start but I got up, came downstairs and went for the loo and then walked back into our living room when my chest just sort of felt really, really heavy and full like someone had filled it with fluid or concrete or something. It was super hard to breathe my chest just didn't seem to want to expand or it hurt to breathe out so me being me I just assumed I had pulled a muscle or I just had fluid going on so I decided to see if the feeling would pass because a lot of times with me I just need to have rest and give things time and they eventually pass but I was feeling more off than usual and I was super anxious so much so that I had to call Mark away from his friends which I NEVER do! We did give it time but by about 3/4pm we decided it was probably time to give someone a ring. 

We initially rang my hospice care to see what they thought and because its a weekend you obviously get less services available but they suggested we ring 111 which we maybe normally wouldn't do but because it was a Sunday and Norwich had just had their Pride day so a&e was going to be busy we really wanted to avoid that if necessary so we rang 111 who assured us a GP would be out to us "within a couple of hours." I thought 'okay, I can wait a few hours...' at this point still thinking i've only pulled something although breathing definitely more laboured at this point. We waited 7/8 hours for a GP which I think in anyones book is unreasonable! I understand our services are stretched but if I had rung an ambulance I would have been seen immediately due to my heart and lung issues and I'm unsure as to why this wasn't the case when it came to the 111 services. A GP and I use the term GP loosely, appeared at around midnight, I'm unsure this man could have diagnosed a cold if i'm honest. He listened to my chest and took my BP and that was it and said "I don't know, go to A&E" EXCUSE ME?! Not a thing about what my chest sounded like, no opinion on anything for me to make an informed decision for myself. He didn't even tell me that my left lung sounded quiet which it most definitely would have done. It was a bewildering experience, Me and Mark managed to get rid of him and then decided as much as I was reluctant that it was best to go to A&E sooner rather than later, so off we toddled, so sure I was that I had only pulled something we didn't even take anything with us, which is so unlike me LOL. 

We turned up at A&E at the Norwich and Norfolk hospital and I cannot credit them enough they really were fantastic with me. We got to the waiting room where we told the woman our story;- transplant, can't wait in a room full of people due to immunosuppression, only a quarter tank of oxygen left, wait 8hrs for a GP etc. and the lovely receptionist went straight to nurses who called us through to triage immediately and we were on the A&E majors wards within 10/15minutes. Here is where we discovered I had a collapsed lung and was moved to Resus just in case and put on 15litres of oxygen. We we were eventually moved to their Respiratory ward by 7am and at this point me and Mark were exhausted! We had been up for about 24 hours with no sleep as sleep in A&E was impossible, the best you could do was close your eyes and hope you were resting a little. When were finally on the Respiratory ward and everyone had spoken to the relevant doctors, as N&N were keen to make sure they were doing everything by Papworths books, things happened fairly swiftly. 

I officially have experienced my WORST procedure to date lol. Now up until this point I have always said my worst procedure thing I've had done to me is the drain removal post transplant as that really was quite horrendous for me but having a drain put in really has taken over that for me. I wasn't allowed any pain relief or anaesthetic and I genuinely never want to have that done again it hurt so much, I swore and shouted and screamed my head off when it was going in and poor Marks hand I can't imagine what I did to it. That being said the relief really was immediate, it was like a gush of air just suddenly entering my body and like I had been holding my breathe without knowing it and that was an amazing feeling and actually probably worth the pain just to be able to breathe (albeit on my 20% Lung Function lol.)

Right so now I'm all drained up and sorted in that regard we just had to give my lung time to heal itself and see if it had re-inflated. A normal person lungs takes only a few days to do so but it's hard to tell with someone like me as my lungs are so damaged so it was one big wait and see game which i was happy to play as I was in no rush to get out as I wanted to make sure everything was okay too. After a few days I was only left with between 10-40ml of air leaking from my lung but x-rays had shown that my lung was properly re-inflated so we didn't know where this air was coming from and meant I could have a possible leak which would have complicated matters. N&N did everything impeccably but unfortunately nothing was really going to get done until I got to Papworth where they could actually make decisions and get stuff done we were just waiting for a bed. Papworth had a bed for me ready and eventually I got there Saturday 5th August I won't go into the drama of transport though LOL. At this point we really dd just have to wait and see if I stopped "leaking" which I seemed to eventually but we were all being very cautious because we didn't want to remove the drain and then find that my lung just decided to deflate again. So we decided to clamp off the drain for 4 hours to see if my lung decided to do anything and if it didn't we would do another x-ray make sure the lung is still looking good and then hopefully remove the drain. 

On Tuesday 7th It was the day! I finally had the drain removed and miracle beyond miracle my lung decided to behave! Yay! 

Now what does this mean in the long run and why did it happen in the first place? 
  1. The reason it happen in the first place is firstly my lungs are SHITE, utter total shite, they are beyond damaged! End of. They are continually getting worse the longer time goes on and thats just a fact, deterioration is just a fact of Chronic rejection and ultimately they're is no stopping it. Pre collapsed lung however Papworth had discovered a very minor and small pneumothorax which is a pocket of air in the lung which they had decided to let be, but this may have contributed to the lung collapsing but in a CT scan I had done we discovered lots of little Polyps which are also little pockets of air in the lungs but little ones dotted around the place and one of those potentially could have popped creating the lung collapse. This can happen from coughing too hard, breathing too hard, physio, a bump to the chest, so really minor things can do it which is worrying for me really because some of these I physcially am unable to stop from happening :-/. 
  2. The plan from now really is to rest, A LOT, the overall recovery time for a "normal" person with a collapsed lung is 6-8weeks so obviously I'm just going to have to be careful for longer but the initially first few weeks are vital! I've been told this probably aka more than likely WILL happen again. It wasn't what I wanted to hear but it was not a surprise. If my lung had not have re-inflated the way they wanted the next step was seeing if it was a leak that needed fixing and if that wasn't the case Glue was the next step! So if my lung decide to collapse again we may end up having to Glue it and my Dr has already pre-warned me that it is not the most pleasant of processes so I cannot wait for that experience! (dripping with sarcasm)
So we have a plan or at least an outline of a plan for when this happens again and at least I'm more prepared should this happen again. It has been a very difficult admission for me because I do always feel as though I'm teetering on the edge of cliff all the time and as someone who suffers from vertigo trust me it's not that pleasant! Death is forever at the forefront of my life, not always acknowledged but definitely always there. Whilst at Papworth I was very aware of the fact that this is the place that I'm probably going to die and where a lot of my friends have died and that certainly did not go unnoticed, I felt very mournful whilst I was there because it's not like I ever leave the hospital "well" I leave with a patch up hoping that it sticks for a little while and that's my reality but certainly a sad reality. 

Regardless of that I am certainly thrilled to be home even if it is on strict rest as I'm so happy to see my Little Baby Marizuki! It was torture for meant seeing him, I was so afraid he would forget me so Mark was face timing me with him everyday. I know it's silly but it's little things like that, that really keep you going and I really just wanted my baby. I'm so pleased to be home just so Mark can get a bit of a "rest" as well as he's be driving up to the hospitals everyday and spending all day with me and in this weather is has been quite yucky and I'm boring in hospital as I sleep quite a lot so I'm just happy that we can both get on with our life again. Hospital really does just press a massive pause on life so yay to home! 

I hope you have all been well during these past few weeks and will write again soon :-D      

As always, thank-you for reading and chat soon