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

16.7.18

Surviving Summer...


Surviving Summer.... Basically I'm not, lol. 

Okay so I am obviously surviving to an extent otherwise how the hell am I writing this? It is certainly hard work though. Britain just is not made for heatwaves and neither are the people that inhabit the place and then add in a chronic/terminal illness and really there just is NO coping whatsoever. As I have mentioned on many a occasion I don't ever complain about colder weather because it then gives me the right to complain when this happens and boy have I been complaining but not just for the sake of complaining because I just really cannot cope with this weather and I'm finding it so, so difficult daily. 

I am trying though and Mark is really helping even though he is finding this weather just as difficult to deal with. Unfortunately one of my drugs has a side affect of excessive sweating and it just so happens for me that seems to all come out of my head, so any photos of me at the moment are literally of me with my hair up because when it's down it just looks like I've washed it it's that wet, it's gross! So any photos with my hair down are usually a selfie and probably just after I've washed it and it hasn't had a chance to get sweaty wet yet LOL. I'm trying to smile my way through this but I genuinely am finding this weather so difficult, moving around just gets me out of puff and I'm so tired all of the time and all I want to do is sleep. I know I have chronic fatigue but this is just a level of tired I have never experienced before in my life. 

I had clinic on June 28th, so a couple of Thursdays a go and I didn't get the best news. I've been putting a lot of why I'm finding things so difficult down to the weather and of course it is definitely playing a big part in my coping at the moment but I had a CT scan which I'm really pleased they decided to do but the CT scan showed a few things which aren't unexpected especially with the Chronic Rejection. So I was told I have a small Pneumothorax (posh medical language, look at me Oooo lol), which for those not in the know is just a small pocket of air in my lung or commonly known as a collapsed lung. However in me it is just a very small pocket at the top of my right lung that we can leave be as it would probably cause more drama to fiddle with it. We looked at my CT from last March next to this one and the comparison is really quite obvious there is much more scaring in the lungs, infection is swarming the place and although my Aspergillious cavity is smaller it is however right next to the wall now and full of crap. My Dr asked if I was in a particular pain in my chest of which I can't say I am but I do take a heck of a lot of morphine painkillers so potentially wouldn't know anyway but apparently the fact that my aspergillious cavity is pretty much on my lung wall means I should be in quite severe pain from it... At least that means my pain meds are doing their job hey?! LOL 

So basically I have deteriorated, whoop. I'm okay about it though as it has been TWO years since I was diagnosed with Chronic Rejection and it would be stupid to think I could go on forever without at least a little bit of deterioration. I think sometimes though people think that when I say I'm stable that, that is a good thing and the thing is it is but it isn't as well. Yes to be stable is good but I think people forget that I'm stable at a extremely LOW level of health therefore I'm still battling things that normal people would consider awful and probably wouldn't be categorising them as being stable. I guess stable is just my word for people to say I'm not worse but still battling on. 

I think whilst this weather continues I would not consider myself stable at all as I'm also still battling a infection which drs have decided is going nowhere so now I just have to measure my level of coping with it, so when it gets too much I will opt to go on IV's which probably won't get rid of it but may dampen it down enough that we can control it but once again I have to be really careful that I don't go on the IV's just willy nilly as my body will get too used to them and there is no alternative after them. So persevering for the moment. I am sure though that once this weather cools a bit I will be coping much better. In the mean time though I'm basically living in front of our Dyson fan which is already worth its weight in gold!    

As always, thank-you for reading and chat soon

30.6.18

Gathering Frustration...


Okay so I'm not a moaner I never have been not really and if I do/have moaned then there's usually a very good reason for it. I know some of you reading this will be wondering why there has been a severe lack of blogposts on my part over the past say 9 months (estimate.) I just haven't been able to express myself to you guys fully I suppose, or maybe that's wrong to say I  know what I want to say a lot of the time and things I want to talk about but it would just appear like I'm moaning and I don't just want to moan at you that's not who I am but my situation certainly brings out that side in me sometimes. At the moment this is what I need and i guess I'm just pre-warning you that this post could appear moany so if you aren't up for that today then carry on no further. 

I sometimes tell myself off when I feel a little sorry for myself because there's part of me that thinks I should have no right to complain at my situation because I am still alive albeit living with Chronic Rejection and I did get my transplant so what do I have to complain about? Well I've decided I have every right to moan because you know what my life on the daily is bloody hard work! 

- I live in constant pain.
- I wake up everyday feeling sick.
- I'm on constant pain medication.
- I'm on a strict regime of pills, nebulisers and physio.
- Walking more than 10 metres is near impossible without having to sit down and rest.
- I'm coughing so much phlegm it's disgusting. 
- I have no energy and constantly need a nap.
- Doing something as simple as brushing my teeth, getting changed, bathing, brushing my hair makes me out of breath.
- I now need a wheelchair whenever I'm outside. 
- I currently have stomach issues that nobody can figure out and don't seem that inclined to either.
- Most recently I have a infection that doctors seem to have decided isn't an infection and just "normal" phlegm [roll your eyes here.]

Okay so there's a few of the things I deal with on a daily basis and these by no mean, means I don't enjoy my life, I DO! I really do. Mark goes above and beyond when it comes to making life fun and enjoyable for me and we really do some fun trips like to Edinburgh, Cornwall, Paris, Rotterdam, The Lake District and so on, lovely days out and even just a trip to a lovely pub garden for a drink, or a cafe for a cup of tea is nice for me but that's the thing sometimes those things are made impossible by my body. Sometimes we book things which we then have to cancel because I'm too ill or we'll be on a trip and I'll get poorly whilst we're there and therefore the trip becomes more about resting where ever we're staying. 

I guess my frustration has built up and come to a bit of head this week because I had a urgent clinic on Thursday because I have my lung infection back after having only been on IV's 4 weeks ago and in combination with this horribly humid weather my breathing has been getting worse and I've been sleeping A LOT. Now I admire Papworth and my Doctors for everything they've done for me and still continue to do for me but I felt somewhat swept to one side on Thursday. I felt like I was telling them how hard I was finding things and all I was really getting was "There's only so much we can do..." and I totally understand in my situation there is only so much they can do but I wasn't asking for them to make me "better" because we all know that's impossible but I got the impression that, that was what they thought I was asking for. I wasn't. I just want this infection to go away to feel how I felt pre infection of 6 weeks ago I wasn't asking for miracles. We all know that with this Chronic Rejection stability is the vital thing and whilst I have this infection I don't feel stable and that is unnerving for me and when one of your doctors decides to state the stat that even if the transplant had gone as planned the average life expectancy is still only 5 years, I'm not naive I am fully aware of this fact but it's not something you need reminding of when you've just hit your 3 year transplant anniversary, tact comes to mind. 

At my clinic they also decided to tell me that they didn't actually think it was an infection and possibly just inflammation in my lungs and I understand where they are coming from because it's hard to justify putting me on further IV's when my body doesn't seem to present in the normal ways, my x-rays never show anything, they never hear anything on my chest even though I'm coughing up tonnes of green phlegm, my O2 sats are always normal and everything would "appear" to be fine. That's the way I have always been though, I never get temperatures even when I had sepsis I didn't get a temperature until they put me on antibiotics to treat it, I put 12 kilos of fluid on without anyone noticing because it just didn't appear anywhere on my body, Doctors NEVER hear anything on my chest ever! For as long as doctors have been listening to my chest they never hear anything. I guess what I'm saying is I'm worried that by disregarding my infection and deciding to treat it less severely than an infection that it might lead to worse things. 

We didn't leave clinic completely deflated though we aired our worries and I certainly feel like they listen to me and always allow me to air my concerns and certainly take them on board too and we did leave with a "treatment plan" to try and help which I felt better about and I also do understand we can't just stick me on IV's willy nilly as my body could get too used to them so I am happy to give this a go. I just sometimes get the impression that they did the transplant and the whole chronic rejection thing is just a bit of a hassle for them I think we're all still surprised I'm still here but here I am and therefore it looks like they're going to have to continue to deal with me and my odd and strange body. 

I'm trying my best though, I am resting thoroughly, I'm doing my meds and treatments religiously and hopefully soon I'll find it's a making a difference as long as I can clear what's on my chest and I think once the weather changes and cools a bit I'll be able to cope better :). 

As always, thank-you for reading and chat soon