Tuesday, 28 February 2012

The Listing Meeting September 2011

Over lunch we tried to take in the enormity of what had been said to us and what we had committed ourselves to. We had agreed in the meeting with the surgeon, that we thought transplant was the best way forward. He had gone through the risks entailed in the surgery, which are complex and many.

These included: infection, bleeding, blood clots, failure and rejection of the transplanted organs. I had then signed the forms consenting for the operation, which felt frightening enough without all the problems that had been explained that may happen to me post transplant. Post transplant there has to be a lifetime commitment to medication, which helps control infection and suppresses the immune system to avoid rejection. There are many side effects to the drugs, some very risky and there is always the risk of acute rejection and chronic rejection.  This is why transplant is offered as a final treatment, it is not to be taken lightly and there is no going back once it is done. One set of problems is swapped for another, but there is no guarantee that things will be any better and in fact there is a big risk, they could get a whole lot worse.

But the balance is still  a fifty per cent chance of not surviving the next three years and fifty per cent chance of living five years or longer post transplant. The odds are in my favour for transplant and I have been told I am a good candidate. It is strange to sign forms for an operation when you have no idea when it will be done, but it is different than a planned operation, everything will be an emergency when it happens and it is better to have things explained to you when you are calm and sign the forms then. I will have things explained again and sign again when it happens too I believe, but goodness knows what I will be taking in when that moment comes.

I have also signed for various research projects that are being undertaken investigating a variety of things regarding transplant such as rejection. And I have signed that my old heart and lungs may be used for research purposes, well they will be of no use to me and it may help someone else.
After lunch we go back to meet the transplant co- ordinator to go through what I can and cannot do while on the list. Surprisingly the 'cannot dos' are only one: I cannot travel abroad as I will be too far away for them to get me should a donor be available. However, I can travel anywhere in the UK as long as I inform the team if I go anywhere further than three quarters of an hour away from home and I am given twenty four contact numbers to phone for this reason or to phone in emergencies. I am even allowed one unit of alcohol a day if I like, this is really easy for me because I haven't really been drinking alcohol at all in the last year. It had been very easy to give it it up, although I did use to enjoy a glass of wine or two (or three!!!) in days gone past.

We had a lot of questions to ask, which were duly answered such as: how does 'the list' work? Well you are not top or bottom of the list or working your way up it, it purely depends on a 'match' coming in and then your condition at the time. If there is any other competition for the organs in your region, then each case will be considered and the most suitable patient decided upon: there may be no competition at the time so you get the goodies. A match may come into another region and if they have no takers, then, again, my luck may be in, if it is offered to my region. A whole team of  specialists from Papworth will go out to the donor's hospital to do a thorough check on the organs, then the organs will be brought to Papworth and be assessed by the team there. While all this goes on, I will be brought in and they will start getting me prepared ready for the operation. I may be brought in by ambulance or helicopter, depending where I am at the time. While I am being prepared and all this checking and double checking the organs is going on, it may be found that the organs are not suitable for me after all and if there is any question over this, the operation will not go ahead. It was explained that a few false alarms like this may happen and I need to be prepared for this.

I was also very surprised to find out I would be heart and lung transplant patient number four on their list at that time. I don't know why, but I'd always imagined there would be hundreds! There are only twenty odd patients waiting for lungs and thirty odd patients waiting for hearts, or was it the other way round? Whatever, I was surprised again at this.    

Well I think that was everything and more than enough for one afternoon, back to Wimpole Hall Estate for that much needed cup of tea and a slice of cake, where we sat in the garden once again, watching the early September wasps getting on everybody's nerves and children enjoying the last day of the school holidays.

The sun always shines at the end of the school holidays, it always used to sunshine when I went back to my new class after the summer. I didn't have to worry about that now, I miss that feeling at the beginning of a new school year, the excitement, the fresh start ....... but there was a feeling in the air for me that late afternoon, that this will be the right way forward, that everything will work out, that I will be one of the lucky ones, that I might have to start worrying again about that pension, that I might hit seventy after all. The turmoil of the decision that had been hanging over us since February had ended, the decision had been made. It was done. The door was open wide.

I had to wait now for confirmation from the team that I had gone on the live list. There is a substantial amount of data collated then input into the national register and this may take a few days.
Another important decision had been made by Rob, he had given up work now and we were on permanent holiday now, so we decided to plan a short trip away, while Rose was away on her biology trip.

Norfolk and Suffolk here we come.    

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