I Think We've Been Here Before

Yet again I was caught totally off guard when Harefield Hospital rang on Friday morning with a potential transplant offer. It seems incredibly ironic to be so surprised that something you are so desperately and anxiously waiting for actually seems to be happening! Fortunately the plumber who had been visiting to fix our leaky bathroom taps had left and Luke and I were actually admiring his handiwork when the call came! 

I shall not bore you with the details of the drive or the procedure that I went through at Harefield Hospital as it was very much the same as the last time I was called. Except that I had time to have a shower before donning the haute couture fashion item that is the blue hospital gown... I felt so sorry for the transplant coordinator who had to come into my hospital room at about 4pm and tell us that unfortunately the donor lungs were not viable (which they do not know until the retrieval team assess them at the donor hospital). It must be so, so hard to deliver such disappointing news. However, it does give me confidence in the fact that the medical teams do thoroughly examine the lungs (or whichever organ is in question) and any potential organ donation recipient will be receiving organs in the best condition possible. 

The hardest part of all of this is the fact that to get over the fear of the imminent operation and the list of risks associated with it one has to look past that and hoping that all goes well, focus on the life that will be post transplant... So when that is ripped out from underneath you, it’s pretty darned devastating. However, my wonderful husband and amazing family have really helped to keep my chin up! What of my friends? Well I decided that I would post what was, or was potentially happening on Facebook as it is an easy way to keep extended family and friends aware of what was happening. The response through comments and emails was truly overwhelming. Thank you so much for all of your support and kind words. It really helped me get through the disappointment. As did meeting up with my dear friends Hannah and Jess the next day for a good old catch up to celebrate Hannah’s birthday! (I must admit I had a stiff drink!) 

I believe it is incredibly important to remain positive and keep hopeful. I do rely heavily on my relationship with God at these times and I know I often end my blogs with a particular verse, but there are so many I could pick right now! All I will say is that, although life doesn’t always go the way I planned (not that I’ve ever been one of those ‘where will I be in five years’ type of people!), or would like, all I can do is just roll with it and take each experience and let it build me into a stronger (hopefully?!) person. I have learnt to relinquish control of what cannot be changed no matter how much I worry and focus on things like keeping myself as well as possible and living each day to the fullest.  

Whilst I am really disappointed that the call did not result in shiny new lungs for me on Friday, I take joy in the fact that I DID get another call, so now I have to remain hopeful that another call WILL come.

Excess Baggage!

I’ve always been a spontaneous sort of lady... Luke and I used to fill our spare time with random road trips, ad hoc trips to the cinema or visits to friends. This is another element of my life that has been somewhat impacted by the progression of my Cystic Fibrosis. Whilst I do not wish to sound whiney or self-pitying, it took some getting used to!  

For example, if Luke and I wish to spend time away from home over night, it involves getting oxygen ‘prescribed’ by my hospital, so that the relevant equipment can be delivered to my holiday destination. This requires (so they say) about 3 weeks to process, so goodbye spontaneous weekends away! I have to say, I am so grateful that the NHS is able to provide such a service and I don’t wish to sound ungrateful but it is a bit annoying! The main bit of kit I would need delivered is something called a concentrator. This takes in air from the room and filters the oxygen out of it and delivers that up my nasal tubes... pretty clever really! I also need a portable unit, so that I’m not ‘tethered’ to one room. I’m lucky enough to be able to use ‘liquid oxygen’ so in my garden shed I have a big container (Dewar) full of liquid O₂ which I can fill up my portable unit, so I can leave the house and so on! It’s quite funny to watch Luke fill it up, as the oxygen has a very low temperature, lots of water vapour escapes and it makes the shed look like some sort of mad scientist’s lair (well, I guess Luke does sort of qualify as a mad scientist!!). The portable oxygen unit can give me “up to” 10 hours out of the house, which again means I need to plan my days/evenings rather than just going home when we feel like it! There have been many occasions where I have run out of oxygen whilst out and about... but you get better at planning these outings! 

Please note the glamorous black oxygen backpack - A must for any fashionista, no?

When I first began needing oxygen therapy Luke and I lived in a first floor flat, which meant I could not have liquid oxygen. This is because the liquid oxygen Dewar has to remain on the ground floor (it would be far too heavy to get upstairs, not to mention the fact that it would be a fire risk too). This meant that I had to rely on the oxygen company to deliver cylinders of oxygen for me to use, should I wish to go out. Unfortunately, these are in quite short supply, so I would often be without a portable cylinder and would therefore be housebound. This was quite a trying time for me, as I was new to the whole ‘oxygen’ business and as we didn’t even have a garden at the flat, I was quite literally imprisoned! We were very lucky to discover a house had come onto the rental market in the village I grew up in, so we were able to move and not only have a garden, but also able to receive liquid oxygen. This situation got me thinking though. I was incredibly blessed to be able to afford to move house and that one had become available in the ideal location for us; however there must be so many more people in a similar position to me, who cannot move to a location which would enable them to have liquid oxygen, or the use of a garden. This really made me appreciate that although my life is a struggle (well, whose isn’t?!) I have been incredibly blessed. 

As well as the oxygen situation, how can I discuss going away for a weekend and not mention the truckload of drugs and other equipment that I need to take with me?!  I have to take approximately 20 different medications, some of which require refrigerating. I need to pack two types of nebuliser equipment, blood sugar testing kit, my non-invasive ventilator (which I use for physiotherapy and to help me breathe during my sleep if I need it) which comes with many hard to pack facets including filters, mouthpieces, tubing, water bath to name but a few items! Oh, how can I also fail to mention wheelie chair! It's probably a good thing that I am unable to fly at the moment - think of the excess baggage bill! It isn’t necessarily the end of the world if I forget to take a bit of my ‘kit’, especially if it’s only an overnight stay, but as I find travelling and being away from home really exhausting, skipping any part of my treatment regimen isn’t really the best idea!!

Be all that as it may, this weekend Luke and I had a lovely time with our good friends James and Ruth, with some rather loud fireworks... oh my goodness the noise! Lots of food and of course much chatting and laughing! Whilst it is a huge effort to pack up and get away, I’m so grateful that I’ve still got the ability to do so – as well as lovely friends who don’t mind their house being usurped by tonnes of medical equipment! 

Hard to see us through the copious amounts of sparkler smoke, but we are there!!

This is probably one of the hardest changes that I have had to deal with. I was used to being so active - teaching full time, running the children’s activity club at our church, and then going out socialising with friends and colleagues after that! I don’t want to sound like I’m blowing my own trumpet – I’ve just always been the sort that can’t sit still, so suddenly having to is terribly frustrating! The get up and go is still in me, it’s just that I can’t act on it! People often ask me ‘What do you do all day?’ (Not in a malicious way might I add!!) The reality is, the small amount of housework, or similar kind of physical activity will take up most of my morning. Then after lunch my physiotherapy and nebulisers take a fair portion of the afternoon. I write quite a bit and study things, but in comparison to my life before, I used to feel like I was achieving very little. I know that this is not the case. What I’m working VERY hard at doing is keeping myself as healthy as possible until I (hopefully) receive that life-changing call. Through evaluating my ‘new’ circumstances, I realised that there was a lot I could do. I decided to write this blog as a conscious effort to raise awareness and share my story so that others could perhaps be encouraged by it, or maybe even learn something new. Whilst at the moment, I don’t have the physical capacity for much; I certainly still have my mind. So I have begun a campaign – I have started to look at other media through which to share my story... Watch this space!!!