There was no rush!
Strange how the media portrayal of transplant stories is of a quick action drama , with blue lights flashing , does not seem to be so in the real world.
I finished the NICE meeting. My wife and my daughter went to watch our grandson’s school play as previously arranged.My daughter had been to the hospital for the usual pre- transplant check for antibody compatibility etc.
Until the “go ahead decision” it was not thought odd that a prophylactic eculizumab infusion had not been done as per protocol for an aHUS patient transplant.
In the early evening she returned only to be told she could go home to wait and return in the early hours of the following morning. There was going be a transplant .
Our family went to the hospital as requested at 2am and got settled into a room on the transplant ward. Still no eculizumab infusion and we began to mention it to the staff who seemed unconcerned. Then we got the news that she was to be next in theatre and a porter would arrive soon to take her down to theatre.
We were alarmed after all the time spent getting access to the drug she needed no one seemed to care that she was not to be given it. I spoke to the Sister in charge of the ward and told her that according to protocol she was to receive eculizumab before surgery. With the usual afront to being challenged I was told that they knew what the were doing , they did it all the time. I pointed out that was not the case as this was the first UK cadaver donated kidney transplant supported by eculizumab ever, so this was different.
It made no difference they would not listen. In less than 24 hours I had been relegated from an expert witness being listened to at a NICE meeting about aHUS and eculizumab , to being a numpty over anxious parent who did not know what he was talking about. Yet I was the one who knew what the official clinical protocol was. I was on a committee that established it.
This demonstrates that no matter how detailed and correct a clinical protocol can be decided upon by experts and eminent medical practitioners , it could all be for nothing in practice, let down by the weakest link in the delivery chain. That Sister , that night , was the weakest link. She did not know she was, she was used to the common routine not the rare and innovative. No one had told her. Now she would not listen.
We were just as we were in the first transplant in 1999. “ Plus ca change plus c’est la meme chose”
Except there was a new interim aHUS Expert Centre in Newcastle. aHUSUK had designed a patient card with contact details . We got the telephone number from it and asked to be helped. Within a few minutes we had a call back , it was Prof Tim Goodship he was on duty I had only seen him less than 12 hours earlier at the NICE meeting.
We told him what was happening and he said he would contact the hospital.
Meanwhile the porter arrived and my wife confronted the health care staff refusing to let our daughter to go to theatre until Prof Goodship had spoken to the hospital.
Time passed and then we heard that her operation had been rescheduled and that the pharmacy had now been asked to supply the drug. After nearly 13 years of waiting it is hard to believe that we would ever put anything in the way of a transplant but that was what we had been forced to do.
The drug came eventually and infusion begun. It had not finished infusing when another porter came to take her to theatre, so off she went with the saline drip following her trolley.
Now the situation changed as it became what all families facing a transplant feel. Would the operation go well, would the grafted kidney work. The risk in recovery while immunosuppressed and the regime of medicines to take daily ( transplant patients in the media never seem to have to face that most dramatic of changes).
In essence that is all aHUSUK had ever wanted for aHUS dialysis patients. Just to get them on a level playing field with other transplant patients. We knew that life with a transplant came with baggage but it was nothing like the burden of dialysis. Even the two week eculizumab infusion for life was more endurable than sticking needles in arms five or six times a week to link up to a dialysis machine. It was to be freedom as the Trustee for aHUS Patient Voice , who was now in theatre, had said
But at that time for the reluctant advocate it was just about sitting and waiting for the operation to be over. When all had been said and done that had led to that moment, that other realisation enters transplant patients’ and their families’ thoughts. Someone somewhere had lost their life today and their family were having the worst day of their lives.
They would be remembering those 24 hours for a much different reason today.
11th December 2013 – a bitter sweet day.
