Having a transplant is not like having a routine operation. You don’t get given a date and a time to attend. You don’t get a chance to prepare and organise your life beforehand. You don’t even know if it will ever actually happen. Agreeing to have a transplant is agreeing to go on a waiting list for an unknown amount of time. It is agreeing to drop everything and go straight to the hospital for the operation regardless of the time and day and wherever you may be. It is agreeing to have a bag packed and backup plan made ready for your and your family’s life if the call comes. It is agreeing to live your life in hope that you will one day get the chance to have the operation.
There are no guarantees that a transplant will happen if you go on the transplant waiting list. It can only happen if the stars align and a long set of circumstances conspire to go in your favour. The organs that are used to replace the failing ones have to have come from a recently deceased donor. There are only certain circumstances where this is possible (brain stem or circulatory death) as the organs need to be kept in the best possible condition to ensure they can continue to function in someone else. The deceased donor has to have registered to be an organ donor (register here). And the deceased donors family have to agree to the organ donation, and lots unfortunately don’t. So from the thousands of people that die in the UK every week, only a few of them will become organ donors. If more people were registered on the organ donor list, then more transplants could be carried out and more people could be saved.
There is not a national lung transplant list in the UK. Instead there are five regional lists, one for each of the adult lung transplant hospitals (Newcastle, Cambridge, Birmingham, Manchester and London). When a potential donor dies, his organs are firstly offered to people in the region where he passed away. So for Harefield, most of their donors come from London or the South of England. If Harefield does not have anyone on their transplant list who can be matched to those organs, then they are offered to other hospitals for their patients. The hospital’s own transplant list is divided in to the four blood groups (O, A, B and AB) as people can only receive organs for an appropriate blood type. Within the four blood group lists, people are either classed as ‘active’ or ‘priority’. People who are incredibly poorly and have a much shorter life expectancy, will be classed as priority and will be offered suitable organs first. As well as blood group, organs need to be matched according to measurements of antibodies and also the size of organ. Therefore, due to the many variables involved, no one can predict how long I will be on the waiting list for, or even if I will ever get my call. Some people wait days, some months, and some a few years.
Currently there are about 349* people waiting for a lung transplant nationally, with about 200 carried out each year. Harefield hospital is one of the biggest and busiest centres: there are presently 111 people waiting for this procedure. Last year Harefield performed about 50 of these operations. Nationally there are more people waiting for transplants, than organs available. I cannot ever assume that one day I will get the opportunity to have a transplant, that the stars will align, that I will be the one person who is allocated the organs. In fact 26% of people on the list do not make it. There is a short critical window of time, people need to be ill enough to need a transplant, yet well enough to survive it. As there is a shortage of donors, some people just become too ill and are taken off the transplant list to die. Sadly every day, three people die whilst waiting for a new organ (heart/lung/kidney/liver) on the different transplant lists.
If suitable lungs are found for me, then the hospital will ring me straight away. They have about a 10 minute window during which they will try to contact me on the range of numbers I have given them. If they cannot get hold of me in that time, then I will have forfeited my chance with those lungs, and they will give them to someone else. Therefore I have to ensure I am carrying my mobile with me at all times, and have to answer the phone every time, even if I’m busy or in a different room. The hospital need to know how far I am away from Harefield, so if I go on a day trip or a weekend away, that takes me over an hour from my home, then I have to email them and let them know how far away from the hospital I am. As long as I am still only 2 or 3 hours away from Harefield then I am allowed to visit places. It just means that they can take into account my new location when they’re working out timings to get me to the hospital. If I am going somewhere that is four hours or more away from the hospital, then I have to temporarily come off the transplant list for the time I am there, as I wouldn’t be able to get to Harefield in time.
If I get my transplant call there is still a chance that the operation will not go ahead. The surgeon will only go forward if he is completely confident that the lungs are in a good condition and that I am in a healthy condition. Therefore I may be called to hospital, and after a few hours and numerous tests, be then told that it is not going ahead. It is quite common for potential transplantees to get a “dry run” before their eventual real operation. On the odd occasion, patients have been wheeled in to theatre, only to be woken up from the anaesthetic to be told the operation didn’t go ahead.
As no one knows if or when the call will come, I have to be ready to go for the operation anytime. My hospital bag is packed and ready to go, I just need to retrieve it from under the bed. Plans for Lottie have all been made; hopefully she will go to stay with one of the neighbours for the first week. Lottie’s bag has also been packed, so again we are ready to just take her. If Phil is with me, then he will drive me to Harefield when the call comes. If not, they will send an ambulance for me. Phil has had to make arrangements at work as he will immediately be taking some time off if my chance comes. He has even been given a new car space at work, so his car is now always accessible, in case he needs to make a quick getaway. I have written notes for my family, with instructions about accommodation and visiting. We have arranged for Phil’s best friend to meet him at the hospital, and to be there for him during the operation. We think we are all ready and prepared. 🙂
So now it is just a waiting game. And keeping our fingers crossed that I’m one of the lucky ones that gets the call.
*In October 2015.
Please consider signing the organ donor register (click here). It saves lives.