Although our transplant may have been postponed this week, there is one that is definitely still going ahead.
Cameron, a 3 year old boy from Bournemouth, will be getting a new kidney from his Dad, Barry, at Evelina Hospital (St Thomas’, London) tomorrow. Barry’s surgery will be first thing in the morning at Guy’s Hospital.
I met Barry a couple of weeks ago at the pre-transplant ‘education’ clinic for donors and recipients at Guy’s. He’s a great guy who just wants to do the best thing for his family.
This family wishes both of them – and wife and mum Donna, who will have a long day tomorrow – all the very best.
So the tests to discover what sent Phil’s liver enzyme levels sky-high have begun. The doctors have admitted to being mystified, and have ordered a full screening for viruses, antibodies and other disorders – arguably something that should have been done long ago, but better late than never…
There is some suspicion it may be related to hepatitis, although partial test results have come back negative. Inexplicably, some of the levels remain high today, in spite of the time that has elapsed since Phil was exposed to three of the possible culprits – the cocktail of a Hep B jab, vancomycin antibiotic, and Tac immunosupressant pills Phil had in the run-up to the aborted operation.
It will be another 3 weeks for the full batch of results to come back. In the meantime, the doctors have provisionally set a new date of March 19 – although this is obviously subject to the findings of those tests.
Phil is now recovering from this morning’s operation to insert a new permcath. I left him and Anne at the hospital this afternoon to pick up some things from home. As I left, he asked me to bring back some Chinese food. Definitely feeling better, then…
Phil is about to go down for his 6th operation in 10 months. It has certainly been a tortuous and complicated journey for him since diagnosis. He will have a new permcath (dialysis catheter) inserted into his chest, and will quite literally restart dialysis when he comes round from the anaesthetic. He has been remarkably philosophical about it all, asking which side of his chest it would be put in.
It’s obviously not the operation we were hoping for this week! However the transplant cancellation – and the fact that he had his previous catheter removed last Friday – at least meant he had a hospital- and tube-free day yesterday. We went to Bournemouth – where his brother Chris has been living – and all had a game of football on the beach. Phil was able to play in the sand, and later had a luxurious bath – two simple pleasures he has been denied for months. He was a very happy boy indeed.
With no new date for a transplant, we brought Chris back to London with us. He was very happy to be reunited with us all.
This afternoon we will be meeting with the consultants to try to figure out what went wrong, and what caused it. Anne’s research shows that any of the Hep B vaccine, the TAC immunosuppressant and the vancomycin antibiotic can provoke increased levels of liver enzymes. The fact that he had a cocktail of all three on top of one another suggests that this is a possible cause of the ‘abnormalities’ that were detected prompting the last-minute postponement of his transplant.
If this is indeed the case, then it is reversible and we may even be able to get a new transplant date as early as next month.
In the meantime, the doctors are also (finally!) going to have a thorough look at Phil’s immune system – something I had asked them to a while ago seeing as there are rare and serious immune deficiencies in my family and the fact that Phil has had atypical reactions to practically every single drug and intervention he has had. As the lead GOSH consultant – the UK’s leading paediatric nephrologist – commented to me the other evening: “He really is rewriting all the textbooks”.
It’s a pity it has taken Monday’s late-night drama to finally spur this, but at least now it will be looked into properly.
I’m going to take Chris off to Nature Club today so I can be there for Phil when he wakes up. I also have to check with our GP if his new course of antidepressants is ready for collection. With stress like this, it’s a wonder we’re not all taking a course..!
So the transplant was called off at 10.30pm last night. The first we got wind of there being a problem was at 3.45pm, when we were told there was an ‘anomaly” with the blood results suggesting an elevated liver enzyme. Two further sets of results showed it was no anomaly, and that the levels were going up. After a frantic round of calls to liver experts at King’s as well as both surgical teams, it was decided not to go ahead.
The initial explanation was that the rising levels could be due to a reaction to the anaesthetic from last Friday’s operation to remove the permcath, or possibly a hepatitis infection. Anne’s research reveals that vancomycin, TAC (the immunosuppressant) and the Hepatitis B vaccination can all provoke this reaction. In Phil’s case, it could actually be a combination of all three – he had the vaccine on Friday, started the TAC course over the weekend, and was on a vancomycin drip for an hour yesterday.
We have a ‘big meeting’ with the consultants tomorrow to discuss it and plan the way ahead. The transplant has tentatively been rescheduled for March 5 on the presumption that the problems can be resolved by then.
Let’s wait and see… For now, Phil is going to have to go back into surgery first thing tomorrow to have a permcath inserted so he can recommence dialysis. It’s a big blow, but he is being very brave about it all (and was an absolute star with the repeated blood tests yesterday).
We’re going to have a hospital-free day today. Phil has had his canula removed this morning, so for the first time in a very long time he is line-free.
And we’re off to collect Chris…:)
22.25 GMT: tomorrow’s operation has been postponed. Phil will have surgery Thursday to reinsert permcath and restart dialysis whilst further tests done on liver. More tomorrow.
Tomorrow’s transplant has now been put on hold. The latest results show the enzyme levels increasing. Whatever is wrong with his liver is getting worse.
More tests being done. Final decision whether or not to go ahead will be taken sometime around 9pm tonight (UK time).
If transplant is delayed, Phil will instead need surgery to reinsert a permcath ie he will have to go back on dialysis.
Phil’s blood pressure high this morning, and now bloods are showing high levels of an enzyme that could indicate liver problems. More tests being done now.
Nothing like taking it to the wire!?!
The consultant that is on this week has just said that the dosages of immunosuppressants prescribed are all wrong – and has changed them. And that she hasn’t seen the protocol for tomorrow sent to us last week, and disagrees with it, so Anne may not be allowed into the recovery room to comfort Phil when he wakes.
It increasingly seem that Phil faces a better future with a new kidney in spite of Great Ormond Street – not because of it.
I’ve now got to try and get my blood pressure down to a safe level so that I’m still fit for surgery tomorrow…
This picture was taken a couple of weeks ago. Phil is next to Anne. Chris is sat with me. It shows us as who we are: an ordinary family who love each other to bits who are just trying to do the right thing.
A friend who saw this photo remarked how happy we look. It surprised me too, given the circumstances. Yet deep down we ARE happy people, and our unity has kept us going through the insanity.
So as we go through our various procedures tomorrow, this is the image I wanted to leave you with. Whatever happens, this is who we are.
Today, tomorrow, and forever.
I’m back in London after dropping Chris off in Bournemouth, where he’ll stay until I’m well enough to look after him. He was trying his hardest to be brave about it all. But his facade cracked at times: “I don’t want this to happen. I don’t want to be away from you. I don’t like you being hurt.” As I drove back, he called me to say he was worried he didn’t have enough money to buy Phil and me ‘get well’ presents.
Phil on the other hand is chipper and rather pleased he has Anne and me all to himself – a rare treat for twins. He has been setting up our new Wii in the patient accommodation and is itching to play (aka thrash) me at Mario Kart. As he is off dialysis, his diet is highly restricted this weekend. He has started an advance course of immunosuppressants, and they are playing havoc with his digestive system. But the upside of having his catheter removed is that he could at long last enjoy a bath last night – his first in many months – and is today happily smelling of sweet lavender oil!
We have to be at the hospital first thing tomorrow for the start of preparations for his transplant the following day. Doubtless we will have to fight a few battles with the consultants to ensure our wishes about not forcing him to take unnecessary and psychosis-inducing sedatives are adhered to. We will probably also need to forcefully remind tomorrow’s new consultant about what has been agreed regarding Anne and the recovery room. As if we didn’t already have enough to deal with..!
I’m not going to worry about that yet, though. For now I’m going to concentrate on giving Phil all the love and attention he needs and deserves. And take a good thumping at Mario Kart..