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!


Susan Gyss said...

Thats wonderful news, so happy for you and glad to see you haven't lost your sense of humour threw all your tough times, keep eating and all the very best to you. love and hugs from Australia. xoxox

Lotti said...

YAY! I am so glad that the whole Lung and drain horror is finally over and you are back with the cuties! Keep going! :) xxxxxx

Anonymous said...

You are amazing, I'm 1 yr and 2 months post transplant but not cf! I Am loving my loving my new life! Had tx at harefied and had the best care ever. Iv just got back from rugby with my 6 yr son and never felt so alive . Sending you lots and lots of positive thoughts.

Keep your lovely sence of humour and it will take you thru transplant stage. A big gold star for you partner :-)

Take care lovely
Sarah x

Steve said...

I suppose a collapsed lung is a pretty good excuse for a 1/2 way through exit from poker Monday night. Josh, what's your excuse?

Anonymous said...

Wow!! You are an inspiration, you really are. Funny & beautiful too. Good luck with everything Kerry x