On Friday, Hugo was officially added to the waiting list to receive a new liver.
We’ve been waiting for this day to come since we found out he needed a transplant at the end of February. And it’s happened at lightning speed. While on the one hand it’s a massive relief that he’s on the list already, we’ve now been shoved firmly forward into a new, very scary, phase of his journey. So far, it’s involved a lot of anxious waiting, and a nervous jump each time the phone rings, in case it is The Call.
The Call can come at any time, day or night. If a potential cadaveric (deceased donor) organ becomes available, we’ll be blue-lighted up to King’s without any notice. Literally, drop everything and run. The hope would be, of course, that we’d get there, be told the liver was a suitable match for Hugo, and surgery would go ahead within a matter of hours. But there is a chance that the liver wouldn’t be the right size, in a good enough condition, or that it would be better suited to someone else on the list, and we’d be on our way home again.
So we’ve now got a suitcase packed and ready to go, and we’re existing in a perpetual state of ‘ready and waiting’.
The doctors have warned us that the waiting time for a B+ liver (Hugo’s blood type which is, guttingly, rare) can be a lengthy one – up to a year, potentially. If we have to wait for this long, Hugo will, most likely, become very poorly, and it could result in us being much more resident in hospitals than we are already.
But we’re hoping it won’t come to that. It’s not the life we want for Hugo (or ourselves, for that matter). Both Ross and I are determined to be living donors. Unfortunately, Hugo is still so young that I’m not an option yet, so the focus is on Ross. We’re due to start his assessments at King’s this week. Once we’ve overcome the matching hurdle (which, we hope, should be relatively easy – this time, him being so young is a benefit as his antibodies shouldn’t be fully developed, meaning the blood type could be cross-matched), Ross will have to undergo various other tests to make sure his liver is anatomically suitable and his other organs are all fully functioning, as well as physical, medical and psychological examinations. It can take a while to get through it all – we’ve been told it can take up to eight weeks – and Ross is doing everything he can to make sure he is in the best condition (including not dieting excessively – we were both following a very strict diet but we’ve been told that actually, a complete lack of fat can actually make the liver more fatty). If everything is well, and there isn’t any undue risk to Ross, the surgery could then be booked within a couple of weeks.
Whichever path we end up taking, we’re now playing a torturous waiting game. At the end of this wait, we’ll have to let them take Hugo (and potentially Ross, too) off for major surgery. The thought of that day frightens the life out of me. Then, we’ll have a month or so in hospital for him/them to recover and make sure that any rejection is detected and managed. Hugo will have a suppressed immune system for life. Ross’s liver would grow back to normal size in a matter of weeks (it really is astounding what doctors can do these days. Just incredible. It is very humbling when you’re in the midst of it all.) Eventually, we’ll all be back home and allowed to return to ‘normal’ family life, but there is a lot of waiting, on top of waiting, to do before we can get to that.
Waiting for an organ to become available is pretty morbid; suddenly, you feel like you’re sitting around waiting for someone to die. Actually, not just anyone. Someone healthy, preferably a non-smoker and non-drinker, who eats well and exercises regularly and, crucially, has B+ blood (ok, that sounds like a very weird personal ad…). And importantly, someone who has registered as an organ donor; someone who is willing to give us the most precious gift we’ll ever receive.
I think it’s understandable that Ross and I have become pretty passionate about organ donation. We were both already on the register before any of this happened, and I would ask each person reading this to take two minutes out to sign up now. We’ve both recently signed this petition for organ donation to be an automatic opt-in for every UK citizen, with the option to opt out if you don’t want to donate. It’s such a no-brainer to me – I think there are many more people out there that would be willing to donate but never get round to signing up; you’d be much more likely to actively remove yourself from the list if you felt strongly, for whatever reason, that you didn’t want to be a donor. Organ donation is such a beautiful, generous gift – you’re giving others the chance to live, you’re giving families the chance to remain complete, and I think in many cases you’re also giving massive comfort to the loved ones you leave behind. You’re giving part of yourself to save the lives of others. Do it. Do it now (please).
It’s actually my 30th birthday next week (no old jokes, please), and I’ve told my husband that the best thing I could get for my birthday is for everyone to sign up to the organ donor list, or to register to give blood. I recently found out (from a fellow Liver Mum) that albumin (which Hugo has had – so far – nine times) is a blood product that comes from donated blood. And it costs about £600 a bottle. I’d never really thought about where it came from. Hugo has needed so much of this to keep him stable, he really does benefit directly from blood donation. And bearing in mind his rare blood group, it really hit home to me just how important this is. I’ve never given blood myself, but I’m planning on doing so once we’re past this tumultuous time.
All the while we’re waiting – either for Hugo to be lucky enough to get his liver from the list, or for one of us to be suitable to be a living donor – we have to keep Hugo as healthy as possible. He’s still having regular blood tests, and he’ll undoubtedly have more albumin infusions. We’re on constant watch for signs of dehydration, which would require immediate IV fluids. He now has a mild hernia, caused by the ascites, to deal with on top of everything else. If we can keep that under control, it can be dealt with when he has his transplant. Otherwise, he’ll need yet another operation. The poor guy just can’t seem to catch a break. He’s doing us so proud though, as ever. Even though he’s getting gradually more fed up and uncomfortable, he’s still such a smiley boy; he plays, he chats, he bounces in his jumparoo, and he gives us the best snuggles. He’s the actual best.
I’ll admit, it’s becoming harder to stay upbeat as time goes on. The pressures are mounting. We’re trying to keep life as normal as possible – make plans, see people, just live life – but it’s increasingly difficult with the new obstacles we’re facing on a weekly basis (his NG tube, for instance, had to be changed five times in the first week. Five. We’ve now got a team of community nurses to come and deal with it at home, which will save us a trip to QEQM every time that happens, at least). Thankfully, everyone around us is incredibly understanding and aren’t getting offended if we can’t keep to our commitments.
People have commented that we seem to be ‘coping’ so well with everything. It’s a funny thing to think about; Hugo is our son and the centre of our world, and we’re just doing what any parent would do in our situation and putting every ounce of ourselves into making sure he gets well. It may appear from the outside that we’re a bit blasé about what he is going through – that is not the case. But we have to pick our battles and our focus. We can’t do anything about his illness, or the path that it will forge for him and us, but we can do our very best to help him beat it, to give him a happy and normal home and childhood, and to raise him to be a good man. Just because we’re not always openly showing the fear we’re feeling to the world, it doesn’t mean we’re not feeling it.
The truth is, I feel heartbroken every day by the injustice of what he’s going through, and the relentlessness of it all, but I know that we’re the ones who have to get him through it. Soon, he’ll get his new liver and we’ll be on the other side of these hurdles. He’ll be able to start living a more normal, hospital-free life. It will be so worth it. That’s how we cope.