Where now?

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…:)

5 thoughts on “Where now?

  1. So sorry to hear this news, but when you put your sensible head on, you know it makes sense to cancel and wait until everything else has settled into normal parameters again. Hang in there guys, it will happen. Think of this as a practice run. Thinking of you all, Su xx

  2. I am so, so sorry to hear this. We are scheduled for March 5 as well, but my little one spiked a fever last night, as luck would have it. Doctors want to watch and wait. Keeping you in our thoughts.

  3. Hi everyone, and well done with your coping abilties today and i’m more than sure that Phil loves having his brother with him and no line either for a while, like most of us following we just know that this is just a hiccup while the real stuff is being sorted, and it will happen you’ll see, enjoy you all being together for now , loadsa love Pat X

    • The 4 of us had a game of football on Bournemouth beach, Phil was able to play in the sand and then have a bath when we got back to London – 2 simple pleasures he has been denied for months as which he thoroughly enjoyed today!

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