Thursday, 15 March 2012

Another Lung Collapse & My 21st Birthday!!

As you may or may not know, I had another lung collapse, here is the story of the past week!

I went to my local A&E as requested by Papworth last Thursday, after getting some pain in my lung, very similar to the pain I'd experienced the week before when my lung collapsed, although not quite as severe, I also was extremely breathless and I was using my oxygen 24 hours a day again.
They x-rayed me and said there was no collapse, but I wasn't convinced. I wasn't going to argue with the doctor, but I went home anyway knowing I was attending clinic at Papworth the next day. I had phoned my CF team in the day telling them what happened and they wanted me to go up there to be x-rayed and potentially stay in, so they were goingt to get me a bed ready on another ward (to then move onto CF ward the next day) but I called them back and said I'd rather not make a 3-hour round trip just in case my lung wasn't collapsed and it be a complete waste of time, so they suggested I went to A&E, then contact them afterwards.
So after my trip to A&E, I called the CF ward and told them it wasn't collapsed but I wasn't convinced so I decided I'd take the bed on CF ward the next day regardless, hoping I would be able to stay in for a good rest over the weekend, then leave on the Monday ready for my busy week planning my 21st birthday (17th March.)

I was put back into room 3 which was the large room I'd been in before when my lung had collapsed the last week. Obviously Josh was going to be staying with me again as my mental health was not in the best shape and staying in hospital for the weekend would have really messed with my head. I also was seeing the dental team at Addenbrookes on the Tuesday and I know if I'd have been alone, my fear and anxiety of the dentist would have been bad enough!!
Anyway, I had an x-ray done at Papworth almost immediately and was greeted with the fantastic news that my lung was slightly collapsed, only just over 1cm so it wasn't enough to need a chest drain but we would keep an eye on it, keep on with the IV's and hope it improved. Well that night, it collapsed. I just remember having the same stabbing, severe, sharp pains around my left shoulder, I felt extremely breathless and just cried and cried, I was pretty much 'ow' screaming, lol. The nurse heard and came running in, I was then sent off for an emergency x-ray and what do you know, it had collapsed further. So from being told on Thursday night by my A&E I had no collapse, to the Friday night/early hours of Saturday, having another proper collapse wasn't how I wanted the weekend to go, lol - I was then given lots of pain-relief and was able to get some sleep ready to have another chest drain put in the next morning.

Me with the CT scanner, potentially crying saying nooooo I don't want another drain!!! Lol

As it was a Saturday, the on-call team were going to fit the drain which made me more nervous as the time before, it was put in by the same guy who does all the Port-a-caths and PICC lines at Papworth, so it was a familiar face and someone I felt I could trust. I'm a very nervous person so I was given 1.5mg of Lorazepam which was supposed to take the edge off my anxiety and sedate me a little, as my chest drain was being put in under a CT scan I had to be awake, as you have to hold your breath, then breathe out etc. so I wasn't able to be fully sedated. One of the CF consultants came along with me so she could give permission for me to have extra Morphine/Lorazepam during the procedure. I had another 0.5mg just before the procedure and I did feel a bit sleepy and I wanted to be in la-la land but my silly anxiety wouldn't let me! I did have a lot of Morphine (Oramorph) before, during and after the procedure but nothing could completely take the pain away.

I will say, the worst bit is having the local anaesthetic put in, it stings and they seem to push the second lot in quite deeply, the first numbs the skin and surrounding area, the second injection I think, goes into the lung, but I can't be sure as I would never watch, lol! After that though, all you feel is pressure and the odd weird sensation, once the drain was in my lung started inflating immediately so it hurt a lot, well it was more uncomfortable than actual pain but it meant it was in the right place and doing it's job properly!

By the Sunday, my lung was pretty much back to normal and my drain 'pot' hadn't done anything for a while, to begin with the water was bubbling as the air that was trapped in the collapsed area was coming out of the lung, along with any other gunk/blood lingering around in the area. The area that collapsed was almost exactly the same area as the week before, so that made us think perhaps we didn't leave the drain in long enough and I had itchy feet and really, really wanted to go home, so although all the signs pointed to the fact the lung was back to normal, 3 days just wasn't enough. So the plan this time was to put the drain in on the Saturday and leave it until Thursday (today) where it was clamped off, they did this to check the lung still stayed inflated throughout the day, I then had another x-ray this evening and nothing had changed so the clamp was removed a couple of hours ago, so I'm ready to have it out in the morning :) ...It's been in 6 days this time, double the amount the last drain was, so I really hope it stays inflated this time.

It's my 21st birthday on Saturday so the plan is, drain out very early in the morning and shoot off home as soon as possible!! I was going to be going home on IV's, but I've decided to have a few days off as I have been on them just over 1 month now, I'm having my tooth out at Addenbrookes on Tuesday then I will probably come back to clinic on Wednesday providing no further collapses happen and I don't overdo it at my party!! I may then restart IV's but I'm hoping to get a nice break from them for now if my lungs will behave!
During my stay my kidney function figures went a bit mental, one of the IV's I was on had caused my kidneys to stop working properly. I had to have magnesium tablets for 3 days and I was very dehydrated. But after stopping this particular IV completely, thankfully within 2 days my kidneys had returned back to the normal range!

So it's now Thursday night and I'm all packed ready to go home as soon as the drain is out! I can't wait to be reunited (again) with my puppy babies tomorrow, then begin my birthday celebrations. I'm having a poker night with my Dad's family Friday night, then a big house party at my Mum's on Saturday.
My cousin Ashton dyed my hair last week to match some extensions that I bought a while ago, so I'm having them put in on Saturday afternoon, my hair colour is lovely and she did a fabulous job :) my hair is the lightest it's ever been, but it's exactly what I wanted! I also have a lovely lipsy dress and I'm sooooo excited for the whole thing, I will hopefully have some photos to upload for you guys from the party but I intend to be off my face, so I will depend on others to take photos for me;)!!

There were plans in place so I could attend my party even if my lung hadn't gone back to normal, there were talks of hidden chest drains which would hide under my clothing, then return straight back to hospital but thankfully it's all worked out okay :)
I'll leave you with a photo of me in hospital, I woke up with curly hair which is odd for me so my suspicion is that Josh curled my hair during the night, hmmmmm. Either way, it's the last photo of me being 20 on this blog, hooray :)

Oh and, my weight is still increasing, I took a bit of a knock the other day when I was sick 3 days running, but now I'm a little healthier again, the weight is going up again (today I was 43.1kgs)
Thank you for reading.. Hopefully my next blog will not have any mention of anymore lung collapses but instead be a party-filled-21st-birthday-fun-happy-blog, yay :) - can you tell I'm slightly excited???

Sunday, 4 March 2012

Bad Lung Collapse and A Major Weight Gain!!!

I've been trying to write this blog since Wednesday night but really haven't known where to begin, I also haven't exactly felt up to writing a blog in a complete drugged up, numb, morphine-induced state haha! So I thought I'd wait until I could give all the correct information, so here we go.

I came to clinic Wednesday afternoon (3.30pm) for IV blood test levels, then I was supposed to just have a quick chat with my doctor about whether I needed my pain killer doses changed etc, we'd spoken on the phone Tuesday and had already put the prescription in for my next week of IV's and all my other meds, thinking we could make the appointment as quick as possible which couldn't be further than the truth!! I did ask for my anti-depressant dose to be increased and that was about all, I then hadn't quite decided in my head whether I was going to ask for an x-ray or not because as I'm about to explain, I'd had a weird thing happen on Saturday night (which at the time, I'd never thought of putting the two together, but looking back I can't believe I didn't think of it!!) so I thought perhaps I'd mention it and as an x-ray is pretty standard when it comes to CF I thought it wouldn't hurt because they can tell a lot from an x-ray.

I then went to have my blood levels done, then whilst having it done my CF consultant came in and said okay we need to talk about your x-ray *cue panic alarms in brain* she said I'd had a pneumothorax which is the medical term for a collapsed lung. This means somehow the lung had come away from the chest wall and air/fluid had got behind it. We then tried to figure out when the lung had collapsed because to me I'd been feeling as normal as possible, I did feel more chesty, definitely more short of breath, I had my oxygen on 2-3L non-stop for 3-4 days, when normally I only have it on during the night. So I then put two and two together and remembered exactly when my lung collapsed...
It was Saturday night (the night after the evil dentist appointment) I suddenly started getting this agonising pain in my left shoulder blade area, I remember rubbing it, moving my arm around and nothing helped, I thought it was my PICC line infected as that was where it is, the pain then moved lower down my chest, I took some of my morphine medication and fell asleep, that was the last I thought of it! I knew Josh had an important golf match on Sunday morning which I didn't want him to miss, or to have a lack of sleep in preparation - so I decided not to bother going to A&E, even though I do recall saying to him 'I think a normal person would've called 999 for that but we're used to this sort of thing lol'... I know I didn't want to sacrifice his match, golf is his passion and I don't want my CF to take away his life and hobbies and besides the pain had settled so I thought I'd be okay and it was just an odd blip - So basically, Monday night at poker I had a collapsed lung, lol, Sunday morning when Josh had gone to golf, I had a collapsed lung - such a serious thing, but to someone who is used to being in constant severe pain and discomfort, I didn't think anything of it - when as a matter of fact, an ambulance probably should have been called and I would've known all this a lot sooner!!

This meant I had to have a chest drain put into my lung to remove any air/fluid so the lung could essentially re-inflate itself and stick back up where it should be. I was clearly a nervous wreck because I may, or may not, have mentioned before but I suffer very badly with anxiety so when the 'unknown' is about to happen, I go into a massive panic. They did give me some Lorazepam which did it's job I guess, I did feel a bit drowsy and at ease but obviously unless they knocked me out, I was bound to be a quivering wreck!! The procedure then went as follows..
They carried out a CT scan of my lungs, which gave them a 3d perspective view of my lung as opposed to a 2d x-ray image, so they were able to locate the exact position of the collapse. They then mentally prepared me for what was about to happen, probably not a good thing, I prefer them to just get on with it and tell me when it's over haha!! Anyway, they cleaned the area then I had 3 injection of local anaesthetic, two into my lung area and one into the skin, it stung like mad, I have local with PICClol!) 

So in conclusion to all this - I'd never had a lung collapse before, never in a million years did I expect my doctor to tell me I'd had one and I hope to not have another one again! But, the main thing is I've done it, I've come out alive, just with another little scar but that is nothing to me. The collapse was a collapse but it wasn't one where they feared I may die from it so at present I'm still hanging in there okay, if it keeps happening there are future complications regarding transplant but for now, this shouldn't cause any problems in that aspect!

The most important thing I need to mention was that my consultant understood I'm not in a very good place emotionally at the moment so she advised Josh to stay with me at least for the first night, then perhaps switch with family members, so I always had someone with me. But  Josh stayed by my side the entire time, he carried my little fluid tub around for me, he made me endless cups of teas, went to the canteen to pick me up better meals, went on little food shopping trips for me, went and asked for pain meds when they were late, he helped me so much and I think if I had done that hospital stay alone, things would've been very different - he truly is amazing and I'm so so so grateful he stayed with me.

I also need to thank my Nanny, Mum and Father in Law - My nanny slept round my house Weds and Thurs night keeping the little pups company so they weren't on their own, she has health problems of her own but she wanted to make sure we came home to a nice house so I'm really thankful she did that.. Also my Mum looked after the pups in the day, making sure they were fed, she cleaned our carpets and tidied the house up and then Tony (Josh's Dad) stayed Friday night with the pups and didn't leave until Saturday lunch time, my Nanny had turned up earlier in the day not expecting anyone to be there and they ended up having a 2 hour chat with him haha! It's great how families really do pull together in these sort of circumstances.
Also the night I was rushed into hospital, my Mum brought up all the things I might need, like pyjamas, clothes, phone chargers, medication etc. My Step dad also came as did my Sister Kim, when they first arrived I was wide awake but I had been lightly sedated that day and had been given a lot of pain relief which all seemed to hit me at once so I don't remember too much later on that evening, I think I kept drifting in and out of sleep!
My Dad also came up to visit and I had a lot of texts/comments/messages of support and a few lovely cards and presents which I'm very grateful for, I said to Josh whilst in hospital, it's times like this, and seriously life-threatening situations like this one was - that you realise who is important, I had texts from people I barely know but they took the time and effort to think of me, which is more than a lot of people did.

Anyway, it's now Saturday night and I'm back home in my lovely little house with my pups :) it's earlier than most people would leave hospital after a pneumothorax but I do struggle a lot and felt food wise etc, I would have been better off at home.
I'm still a bit sore but I'm bound to be after having the drain out today, it didn't hurt, it was similar to having a PICC/long line/venflon removed, the worst bit (as always) was taking all the plasters, dressings off and getting the stitch out!! So I do still have all my regular pain killers anyway, so thank god for that!
I'm now still going to be on home IV's still until Friday when I will then be back for clinic and I'm sure, yet another x-ray, but in the mean time I'm going to have my dental work done at Addenbrookes hospital on Tuesday, my hair coloured Wednesday, Cut on Thursday, Clinic on Friday and then I will relaxxxxx :) Obviously I'm not a complete moron and although stubborn at times, I know when too much is just too much and wouldn't hesitate to cancel anything, especially since my 21st birthday is on the 17th March and I'm having a house party with around 70-80 guests (eek) so I need to be well and healthy for that, if you want to send me cards/presents/love just ask Josh for our address and I'll look forward to receiving them ;) I'm joking, of course I don't expect anything!! 

Here are a few photos, they aren't in anyway 'gory' like post-transplant photos, I guess the worst one is this horrible photo of my face - but alas, you have been warned ;)

But if you don't want to look at all the photo's there is one photo right at the bottom of the page that you MUST look at, if you have any interest in me, my weight gain, my transplant situation etc, then you will equally love it... So please have a look :)

The x-ray on the left was taken on Wednesday, the collapse is not really visible but the scarring and damage is. The right x-ray was taken in 2008, it is less clear, but it has a lot less scarring.
This was my drain, straight after it had been put in,
This was my fluid pot attached to my drain, it is not all blood - they filled it with 100mls of water so they could watch for bubbling (indicating air was still coming out) it did turn pink because there was blood in my lungs, but there was also blood from where they put the drain in.

This is just me looking rough in my hospital bed!

I still needed 24/7 oxygen at this point.

Close up :) - make up was definitely needed after seeing the previous photos.

My absolute hero <3

I had just been told the drain was coming out and I could go home that afternoon, yaaaaaaaaaay!!
This is where the drain went in, it was just under my left breast. There is a stitch, but no dressing and was about to be pulled out (which didn't hurt at all!)

Me, eating as usual, looking super fat but happy that I was drain-free!

Me looking a lot more well and healthy :)
The amazing, exciting reunion with my baby girls <3
I love them!!!! :D

YES YOU DID READ THAT RIGHT AND YES THOSE ARE MY FEET ON MY SCALES!!!! 44kgs - I'm probably going to cause another lung collapse due to excitement!!! That makes my BMI 17.9, Harefield were already happy with it when it was 16.4 so if they were then, they will be over the moon now :)
An ideal BMI is 18.5 and to get to that I need to be 45.5kgs.
But the highest weight I've ever been in my life is 44.3kgs, so if I can get to 44.4kgs I don't care what happens, that is my ultimate goal - I'm already the heaviest weight I've ever been since being with Josh, so he will most probably leave me now for a newer, skinnier version, but I guess if you want new lungs, you have to deal with the new 'fat rolls' and the consequences... ;) 

Hehe, thank you for reading and for all the support!