From an illness point of view Eloise has always been very hardy, a couple of ear infections caused by spending two weeks under the water swimming on holiday and a couple of colds. Nothing major at all, better than a lot of non immune suppressed people. That's why it probably came as such a shock that she caught pneumonia. It was caught very early and responded well to intravenous antibiotics and Eloise is continuing on oral antibiotics too . This is just thought to be an atypical pneumonia, therefore nothing major and more risky for the immunosuppressed.
On Wednesday Eloise saw Dr M in clinic, I was expecting a chest review rather than her heart. As she'd only been seen in Cardiac Clinic the week before. Anyway she had her Echo and a ECG performed. Both were reviewed by Dr M and both tests showed no signs of rejection.
However you know that gut wrenching feeling you get sometimes that perhaps we're missing something, you know when you lose your positivity ? I got that. I kept thinking was the pneumonia a red herring, or rather was it masking rejection, similar signs, shortness of breath, temperature etc. The cardiac technicians who did Eloise's echo looked concerned and were whispering when they usually chat to me, about what had they seen, measurements deteriorating etc. Eloise's ECG said low voltages , low voltages can indicate rejection. I could calm myself and talk things through like I would if I was giving someone else advise but then the feelings would resurface again. In the end I contacted GOSH transplant team and sent them a scanned copy of Eloise's ECG. In the meanwhile Eloise's discharge summary came from her admission. This also gave me reassurance. It was still good to hear from nurse K that Eloise's ECG had been reviewed today and it looked really good, better then Aprils as she's no longer tachycardic. Phew now breathe.
It's hard living like this, I've described the cloud before, well it was hanging around big time Wednesday and Thursday thankfully moved on to sunny spells now. You never lose these anxieties, well I don't think you do. Waiting for the reassurance of the next clinic appointment but dreading it at the same time. This isn't really normal life is it ? But it's what we signed up for when we got Eloise transplanted. We swapped death for life, we swapped one set of problems for another. We gave her an uncertain future but I guess the only real certainty in Life is Death, none of us escape that.
So that was Eloise's medical year, 12th June - 11th June. Quite a crazy one and a difficult one emotionally . But one year out of 12 incredible extra ones that's still pretty amazing. Each one a gift, each one a bonus.
Like I said that above is just the medical side of things the rest of the time was spent living being a teenager, camping, going to concerts, drama classes, school, roller skating, going to Ibiza, swimming in the transplant games, chilling with friends, shopping with mates, computer games, Lego , watching films at the cinema, Dr Who, tortoises, Sims 3 and loads of other absolutely important things when you are growing up and living !
So you can't write that year off, just come out of it stronger and more grateful for what and who you have in your life.
People who should be there for you just aren't which is sad but ultimately their loss. Then during the last year others have walked into our lives or Twitter accounts and have held us up virtually and in reality. I'm so grateful to you all, amazing friends. #TransplantFamily ❤️
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