Yesterday was my 6 monthly check-up at my transplant centre. As we drove up chatting away, my mum pointed out how the last time we had gone this route it had been via ambulance with lights flashing and siren blaring; it feels almost a lifetime ago since we made that trip. We arrived in good time and even managed to find a free disabled bay (an ironically rare occurrence; for some reason hospitals appear to think that 5 disabled bays will be ample, when in fact it seems logical to me to assume that quite a few people attending hospital regularly might be blue badge holders, particularly a heart and lung hospital). I can count the number of times I have been to harefield on one hand, and because it is such a rarity, plus of course because of what it represents, I always get a huge mixture of emotions flood over me – excitement, anticipation, fear, and also a slight sinking feeling of sadness.
The morning is spent doing various tests (although I didn’t do any of the lung function tests as I am still banned from doing those due to the risk of them making my lung collapse again) and then we headed off for a bite to eat. After a rather lively lunch with much laughter due to inability to get food into mouth without spilling it everywhere plus excessive pudding helpings, we went back across to the transplant clinic, to meet with the doctor for the chat part of the checkup.
A slightly confusing start to the clinic for everyone, as we sat down with the doctor who gently asked how I was doing to which I responded brightly “yeah I’m fine thanks how are you?” Somewhat confusing to a doctor who is seeing me in a transplant clinic and had clearly been reading my notes detailing the summers events. It is a sort of ongoing problem I have, where my desire to protect and not upset other people by describing the most frightening and disheartening aspects of my health seems to seems unable to distinguish the health profession as people who don’t actually need shielding. This is perhaps somewhere where a positive attitude does not help, when it results in the sentence “but I’m doing fine really” being tacked on the end of everything.
We pummeled the team quite vigorously to find out what was going on transplant wise. There have been two main problems recently; one is the continual lack of donors, and the other is non-viability, where there is a problem with either one or both of the lungs, (which is what happened at my false alarm in August) resulting in only one or perhaps neither of the lungs being transplantable.
I came away from the appointment feeling rather downhearted, which is daft because there was much to be positive about and focus on. But I can’t help but get frustrated. The general consensus of the population is that people support organ donation and survey after survey shows that people would like to be organ donors in the event of their death. Yet there is still such a discrepancy, only 22% of people are on the organ donor register, and still the number of transplants is decreasing. Whilst I am determined to keep on raising awareness at times I feel like I am fighting a losing battle. It is true that every day we receive messages from people who have been touched by our campaign or who have learned that they can sign up via the net and have done so straight away (this is the most common response) but I cannot contact everyone in the country to make sure they have considered the topic… and I am running out of time. I mentioned the dizziness and puffy spells at clinic, and they explained that my heart has to work pretty hard now due to teenytiny lungs, then gently told me that perhaps I need to slow down a bit. This is not what I wanted to hear. I wanted to hear that there is something miraculous that they can do to keep my lungs holding on that bit longer, to improve them a bit more and to help me last that extra mile whilst I wait for my transplant, but they can’t do that.
As my mum pointed out on the way home (which made me want to deck her although it is clearly not her fault and she is 100% right) it is down to luck really. If I am lucky enough to be in the 50% that get this transplant then yay, fantastic, the possibility of some years with healthy lungs is an exciting contemplation, but because it is down to luck, this is why I have decided to go out and live life now, not cocoon away in a self preservative manner. But it still makes me sad, I am not brave, I am greedy and desperately want to keep on living.
I do love writing this blog, it is so therapeutic, as even just by doing that it has made me realize how lucky I am to have such a fantastic life that I want it so so much, not everyone is lucky enough to feel that happy with their lot, so already feeling perkier. (proof of my “but I’m OK really” syndrome there!)
2 weeks ago