Thursday, 11 September 2014

Time for some reflecting

So today is 200 days since having my life saving double lung transplant... doesn't time fly when you're having fun (and breathing easy!) Over the past month or so (really since hitting the 6 month mark in August I guess) I've been doing quite a bit of thinking about how my life has changed... but also just how things were pre-transplant. I wouldn't say this was entirely off my own back, I've had quite a few serious (ish) chats with people about what I can do now and how this differs to my life before and it's got me thinking a little more about everything.

Pre-transplant. (The early years!)
I wasn't diagnosed until I was about 5 1/2 years old (by today's standards that's pretty late) so I had quite a bit of scarring damage already sat in my lungs when the doctors first got their hands on me! Through primary and secondary school, I was very active, doing almost any activity available to me, which helped massively with physio, and chest clearance. The eating side of things was never a good topic, and was a frequent cause of arguments and unhappiness. As I got into college, my exercise regime diminished, to pretty much just walking to/from college etc. I did do a bit of swimming from time to time, but nothing regular. Throw in a change from GOSH to an adult CF clinic at London Chest (LCH) and my whole CF life was kind of derailed. I never felt that I could trust the team there, so although they were altering my regime (supposedly for the better) they never really took into account of what I wanted/felt... all in all I became a lot less compliant with things, especially nebulisers and physio sessions. This fell in perfect timing with me going to Uni and being away from home. I no longer had mum breathing down my neck to do my treatments, or to eat at set meal times etc. I was suddenly free to do as I wished! Que a decline in my overall health.
I had my first ever CF related admission during the first year of Uni (age 19) which was quite a shock to the system. My lung function  had declined and my weight was pretty naff, although I think I did manage to pretty much maintain it despite having to cook for myself! During my admission, the consultant (in her ever lacking bedside manner) strolled into the room and basically said "if you don't buck your ideas up, we'll be putting a port in your chest and doing a gastrostomy" then turned on her heel and left me reeling with these new terms and thoughts of impending surgeries. Quite rightly, this freaked me out and I had quite an emotional conversation with my mum (who was probably in the middle of her office) I outright refused both of these suggestions and promised to myself that I wouldn't let them happen, I was going to do better and get myself well away from those possibilities.
In a nutshell, I couldn't prevent my lung function dropping due to catching Cepacia (a nasty bug that is very clever and resists most anti-biotics. Once caught you need extremely rigorous treatment quickly in a vague hope of getting rid of it.) and my weight never really did much - maybe fluctuating by a kilo. By the time I was a year out of uni, my lung function was gradually dropping into the 40-50% range, and I was needing more regular IV courses. Having had long lines through my arms for the past 4-5 years I was facing weeks of pain and discomfort with each course. It got to the point that I couldn't even last 2 days before needing the line changed due to it getting blocked and painful, so I finally gave in and accepted I needed to have a port-a-cath put in. 
In the summer of 2010  I had my port put in my chest. It was pretty much a pain from the start. It was in a ridiculous place (right in the centre of my boobs) so I had to butcher all my bras and remove the underwiring, it was also very stiff to administer anything, so a lot of force was required to push through bolus syringes of medication, and I couldn't ever have a drip running without a machine to pump it through, oh and it never bled back- which was one of the big selling points to me was that I'd no longer need to have blood taken through my arm, it could come out my port. Throw in the fact that it had to be flushed every 4-6 weeks and there was suddenly a lot more to take in than first thought... and now it was in me, there was no going back! In hindsight, it was the right thing to do, it did make doing IVs so much easier, and when it wasn't accessed it could be well hidden as I didn't (still don't) have the habit of revealing my boobs to all and sundry.

Pre-transplant (23 onwards)
I think my health did start the downturn when I went to LCH, but having had a few even worse experiences with some of the staff etc, I decided to change my care to Papworth. This decision was based on 2 key points- it made sense logically due to travelling, and if I ever got to the point of needing transplant (wasn't something I'd ever been talked to about, or even considered as being a route for me) my whole care could be managed by one hospital... and if it was good enough for Royals, then it must be good enough for me :)
Even on my first appointment with Papworth I realised how my care could be maintained and looked after in such a different way. Although within a few days of my first appointment, I was admitted for a couple of weeks, I had gone into my Papworth life with a more open way of thinking. They wouldn't admit me so urgently if they didn't see the need for it.  I had a heavy dose of new anti-biotics (they were actually trying new things with me, this was novel!) and had a strict regime of physio and saw the dieticians regularly who organised more food than I could shake a stick at. I saw more people before lunch here, than I did in an entire stay at LCH. I got out after that admission and did genuinely feel better. They were going on the basis of having semi regular 'MOT' admissions in the first year in order to try to kick my bugs into touch, with the hope that it will prolong the need for more intense admissions in the future.
Ultimately my lungs, although getting a fraction better initially, just couldn't carry on under such harsh abuse from the nasty bugs having fun and games in there. My lung function kept dropping to the point of now being around the 35-40% range. Now transplant was brought up quite seriously. This was a shock to me (and my family) as I'd always been so well, transplant was for sick people, so it didn't seem right for it to be considered for me. At this point I said it was something I'd consider in the future, but not even worth considering now. 
Next suggestion was the point of tube feeding as my BMI was never getting above 18 (into the normal range). I'd had a bad experience with a nasal tube at LCH and wasn't keen to try it again, but this was better than the alternative- a permanent stomach tube. So begrudgingly I tried the nasal tube on one admission. I got it down on the second or third attempt, but the tube itself only stayed down for a maximum of 5 minutes, but it was a good start. Next admission I tried again, got it down and even managed to tape it to my face and start watching TV... about 30 minutes later, a slight throat clear and hey presto! Tube back up. After numerous talks, demonstrations and my body's unwillingness to put on any weight we all decided it was time to have a PEG (stomach tube). The op went well, the post op phase started off OK, but soon took a turn for the worse when my oxygen levels refused to go above 80%, and one day I ended up as an emergency admission into Papworth as my oxygen levels (sats) weren't even above 60% - I'd turned a funny colour of grey/blue, and basically had no energy to even move, I was ready to curl up and just let what was going to happen, happen. Luckily, Mum & Glen got me to Papworth quick smart and within about 10 minutes of being put on a high level of oxygen I was my normal colour and back to being myself. This saw the start of my 24/7 oxygen needs. After this, I was permanently on oxygen- I had more portable cannisters delivered to home, along with a machine for when I was at home (and later got one for work too).
Although the oxygen obviously helped with my energy (and colour!) it was the start of me pulling back from doing everything that made me me. It was such a gradual decline, I don't think I ever really noticed (along with those that saw me daily) just how bad things were getting. It was only when people who only saw me rarely would make a comment (mostly to mum who then relayed them to me) that it would strike home how things had changed over that intervening period between visits. By the August of 2013 I was seen in the transplant clinic and it was felt that it was time for the assessment. My quality of life was majorly impeded by my oxygen and lack of lung function (now sitting mid 20%) despite still working and doing everything possible, I was permanently tired, and even only working 5 hours a day, I'd come home and normally be asleep on the sofa when Glen got home from work, I'd wake enough for dinner, then be dozing again until bed. Even after 12 hours sleep I still felt tired. My body was running on empty. My weight however was starting to increase thanks to the tube feeding, and I even had a form of a natural appetite, so I didn't have to tube feed as often as originally thought as I was actually eating like a normal person (some of the time!) I think just having it there as a back up took away a lot of the stress and pressure that had always accompanied meal times- we were now able to enjoy what I did eat, and if it wasn't a 'normal' adult amount, then I could feed overnight and not lose out on the calories/nutrients I needed. A weight had been lifted (no pun intended!)
September 2013 I had my 3 day assessment for transplant, and was followed up around November time. The doctors all felt it was time for me to be listed for double lung transplant. It was kind of what I was expecting them to say, but me being me, I refused to go on the list until the New Year- mostly because I had my holiday to Antigua booked, and I didn't want to go on the list before that and potentially miss out on the holiday if a call came in before! Silly I know, but you can't stop this girl having her holidays! As it turns out, the holiday was where Glen proposed so I would have missed out on having the holiday proposal and maybe wouldn't have even got the proposal yet depending on what happened!) So end of January I saw the team again and it was D-Day. I signed all the documents to put me on the active waiting list, was told it would be a few days before everything was 'official' but I was now waiting, and should be ready for a call anytime (although realistically it'll be months!) My lung function was now about 23%.
February I was started on a course of IVs (a week in Princess Ward, then finishing off at home) as I was feeling quite buggy and lethargic (more so than normal). Less than a week after finishing this course I got my call! Everything seemed to line up nicely for me- having just come off the back of an IV course, I was in a relatively stable position chest-wise. Obviously it was quite a shock (as told in previous posts) and everything seemed to go really slowly on one hand, but whizz by on the other!

How was I pre-transplant?? I was tired all the time, I had permanent back/rib ache from constant coughing, my hips were hurting (I was obviously holding myself all wrong due to the coughing), I was getting a lot of stress headaches from coughing, I was grumpy and fed up. I hated the fact that I was an imposition to my family, nothing could be done spur of the moment, it always took a LOT of planning to make sure I had enough oxygen, extra tablets, spit pots, places and provisions to rest if needed etc. Even a 'quick' trip into town seemed like a massive expedition that I needed accompanying on in case of emergencies. I was dependent on other people just for me to exist. Ultimately I was unhappy and fed up- not that I let on to others around me... well not consciously, but I'm pretty sure they all could tell.

It's only from sitting now, and looking back that I can admit just how unhappy I was. I wouldn't accept or admit it to myself back then. It was almost like if I ignored those unpleasant feelings then they didn't exist, and therefore couldn't do me any harm.... but in reality I think bottling them all up just made me feel even worse as I wasn't sharing my true feelings... I wasn't being true to myself, or those around me. Not a good thing!

200 days post transplant
I can honestly say that things are going great! I had a review appointment on Tuesday and they're really happy with how things are going *touch wood*. My x-ray is clear, my weight is good and most importantly my lung function was awesome- the total amount I can breathe out is ABOVE 100% and my FEV1 (how much I can blow out in 1 second) is at 96%. Compared to about 7 months ago when neither of those were above 25% I'd say that's bloody brilliant!! My exercise tolerance is amazing, the thing that holds me back is generally my limbs not being strong enough to do everything my mind and chest wants to do. I generally do feel so happy! Honestly, the only thing that I am a bit fed up with is that I'm sat at home doing boring housey things all the time, and not really having too much of a life purpose. I'm in the process of sorting out a staggered return to work (Drs gave me the OK to start back now I'm post 6 months) so hopefully I'll start to feel a bit more like a 'normal' adult again going to work. Although I'm sure once I'm back into the working life I'll miss all my free time!
I am now no longer dependent on anyone, if I want to go out for a wander, I just go. If I want to go swimming, or for a bike ride, I get my bits and go. Planning time away more than a week in advance is now possible as I can pretty much rely on the fact that I will be well enough, and have enough energy to cope with whatever is planned. Days out can be done spur of the moment, I don't have to worry about only having x amount of oxygen cannisters until my next delivery.
I can cook my own dinner without fear of blowing up the house, or having to come off oxygen for time in order to cook using gas. In our new house, I wouldn't have been able to be in the kitchen, dining or conservatory (all open plan) while Glen was cooking due to the fire risk so I would have been confined to the living room only.
I now have such an appetite and interest in food that I want to get into baking/cooking properly, whereas previously I had no interest at all in anything food related. I was tempted to make Glen a birthday cake, but after my first attempt fell a bit flat, I thought it would be more of an insult to serve him something pathetic... so I defrosted a bit of our wedding cake for us to munch through! Much nicer.
Obviously June saw us get married and go on our honeymoon. Although we'd planned it with the thought I'd be on oxygen and very tired, the fact that I got to that important milestone with nice new shiney's was beyond amazing. It probably was the best wedding gift (lovingly sent from my donor angel!) we could have received. I was able to be part of every second of the day without having to take time away to rest. I enjoyed walking down the aisle unassisted (by person or oxygen), I could have my first dance unimpeded by wires and I could generally float around the venue in the princess dress that was sooo me! None of that would have been possible if I hadn't got my op. Our honeymoon, we barely stopped! We walked sooo much, I could run, play, climb, dance etc... (yes I'm a big kid!) and generally just enjoy being with my husband in Disney, practically without a care in the world (I was missing my Judy obviously!)
Since then, I've been building up all the exercise I can do- starting off with support from the gym trainers, or family/friends, but now I'm off to fitness classes, going swimming, doing epic walks with the dogs, going for bike rides etc... none of this I really saw myself being able to do again... even the thought of having the transplant didn't really compute just how much my life has changed.

When a 'normal' person has to take the dog for a walk, or force themselves to the gym after a particularly 'foody' weekend they see it as a chore 'I suppose I'd better take the dogs out for a walk'... or even a trip to the supermarket to do the weekly food shop. For me, although sometimes the timing isn't great, or I have to juggle things around in my day, the actual act of going out and doing whatever is a happy thing... because I CAN do these things for myself now! I'm sure over time the novelty will probably wear off and dog walking, exercising and food shopping will be seen as a pain in the bum, but for now I'm grateful for them. I appreciate just what living is, and I'm doing just that... I'm LIVING my life now, not just existing.

200 days on for me being able to live, means it's been 200 days that my donor's family have been without her.Thank you to my wonderful donor angel. She was a brilliant and kind lady who even in death was able to give the most wonderous of gifts... she gave me back my life! 


  1. Wow, I sound just like you! It's great to hear someone else's perspective. I am being evaluated for a lung transplant and hearing a positive story, well is just so great to hear. I have been trying to be realistic about the whole ordeal, but realized maybe I was being too negative- so your story has lifted my spirits. Keep up the good work and I hope you stay healthy!

    1. I'm glad my ramblings have helped you. I started this blog as a kind of therapy for me, somewhere I could just go on about all the things on my mind that I didn't want to 'burden' with my friends family... but now it's more of a place to share the positive sides of things.
      Don't get me wrong, it took me a long while to get to the point of accepting my need for transplant (and all the other major changes e.g. port, peg, oxygen etc) but in hindsight, all those 'big changes' did do me a LOT of good... ultimately they all kept me going until my new shineys arrived!
      If you're at the stage that your life is more of an existence than a life, and you're not able to do the things that you want to do, then it's time to be listed and hopefully get those shineys nice and pronto- I know it's not always that simple, but at least if you're listed you're halfway there! Like the lottery say 'you've got to be in it, to win it'!!
      Take care :)

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