Being listed, and the torture of waiting

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’.

Hugo, not helping with the packing.
Hugo, not helping with the packing, but doing some awesome bouncing.

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.

Hubby spending another evening watching sports on the bike, clocking up the miles to get his liver in shape.
Hubby spending another evening watching sports on the bike, clocking up the miles to get his liver in shape.

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.

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19 thoughts on “Being listed, and the torture of waiting

  1. Hugo is not only doing you and Ross proud being the brave little soldier that he is, you two guys are equally doing him proud Polly. Just keep fighting for him keep positive you are all amazing strong people big hugs to you all and in the absence of Carlie if there’s anything I can do for you guys you know the Numbr honey please don’t hesitate to ask hun, much love to you all xxx

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  2. Hi Holly! We met briefly at stay and play baby group in st george’s hall when you came to get Hugo weighed and we spoke (I had my daughter with me Adelaide who is about the same age i think) Hugo is adorable! Your blog is such a lovely insight into your tough journey and i wish you and your family all the luck in the world! What awesome parents Hugo has. take care. Hannah xoxo

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  3. Polly, I admire your and Ross’s courage – you have so much to contend with and all it’s about your new baby who looks adorable. Keep going, I know it is very hard but truly, what else can you do? With your attitude, you will pull through. All my best wishes to you and your little family. xx

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  4. We both know you are being the best parents that Hugo could possibly hope for and are we certain that the day will come when this is all behind you , giving you all the happiness you are due

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  5. This was us 3 years ago. My son was approaching his 1st birthday. I was assessed as a living donor, but we got the call when he had only been listed for 3weeks. We waited 8 hours at BCH before the op got the go ahead. He went into theatre at 5pm on a Friday afternoon and was brought to PICU 12 hours later. I still don’t know how we got through that night. But we did. As will you. And we were home 16 days later. He’s had a few plumbing problems over the past 5 weeks, but this is the first blip he has had. And apparently it’s a common blip (for a split graft) that has a plan. So when he had this fixed he will return to nursery, and then start school in sept and lead a totally normal life. With just 3 meds in the morning and 2 at night. Spring and summer is a good time for the op – infection rises, so you can do anything outside during the 3months of isolation. Good luck

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    • Hi Clare, thank you so much for getting in touch and sharing your experience. Good point about the timing – if we can get his done before summer, it will make it much easier for us. I hope your boy is right as rain and back at nursery very soon. X

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  6. Ps albumin is £600 a bottle?!?!? I think Harry had it 4 times. I had no idea!!! We met someone at BCH whose child was on liquid omeprazole (we had dis persible) – that was £200 a bottle and his little bro had smashed an unopened one.

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  7. We too have our bags packed. Off to see our b+ baby girl for her 30th birthday. She had a transplant 22 years ago at age 7 due to biliary atresia. We will never forget that wait, or the tremendous gift we were given. Best wishes to you and your precious boy.

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  8. Hello. I know exactly what you and your family are going through, I’m in a similar situation. I’m 22 and waiting for my 3rd transplant, been waiting a year but remaining happy and healthy for now. Love and thoughts to you all xx

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  9. We too are going in the list for a B+ liver.
    Thanks for posting I’m feeling the same fears and worries over Conor
    Although he’s not in hospital all the time which leaves me with the feeling is this the right thing.
    Sending big hugs.

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