Waiting and the Chronic Shortage of Organ Donors

This last ten days or so has been quite difficult, I seem to have been having more bad days than good with one thing or another. It started when I should have been going to to theatre with Sarah to see Rob in his plays, he had really spent a lot of time and hard work on them. I really wasn't feeling that well, but felt determined to go, but unfortunately by the time we got there and got seated I knew I really wasn't well enough to manage it, so we had to leave before it even started. I was so disappointed and frustrated. It continued into the following week with a good day here and there, followed by one bad day after another. My PH centre had suggested trying a new anti sickness drug to see if this might improve the feeling of nausea and dizziness, so I decided to give that a good try. Unfortunately the new drug, Ondansetron, was no where near as effective as my existing drug, Domperidone, so after enduring a few even worse days with it, I soon reverted back to what I've got used to dealing with, albeit it is only effective to a point.

It is weeks and days like this, when I have to keep cancelling appointments and activities with family and friends that I know the transplant cannot come fast enough and I just hope against hope that a match will come soon, then at least there will be an end to this phase of waiting and tolerating the uncertainty of how I am going to feel from one day to the next and whether I will be fit to do whatever I've planned or not. Sometimes it does feel like there isn't any point in even making plans.  At least if I can get the transplant I will feel I have attempted to try and improve things, rather than this never ending limbo of just waiting and pumping myself with drugs just to try and stay as well as this.    

Last night's ITV programme 'Tonight',  Waiting for a Heart - ITV News , discussed the issue of organ donation and highlighted the chronic shortage of donor hearts, so even people placed on the 'Urgent Heart List' are unable to get donors. Now most people have heard of organ donation and some have signed up to be donors, but most people do not understand how the 'waiting game' works and unfortunately for us patients with PH in need of a new heart as well as lungs, we fall at the very bottom of what feels like the scrap heap. This is because our lungs are not working properly so we need heart and lungs together and as it stands at the moment in this country, there is no urgent list for heart and lungs or for just lungs, there is only an urgent list for patients in need of hearts. So if a donor heart becomes available, it is firstly offered to someone on the urgent heart list and then the lungs are donated to someone on the lung transplant list, and fantastically two lives are saved. If the heart and lungs were offered to us, then only one person would be saved, so there is some logic to it in terms of firstly giving it to someone who is possibly more critical - and no one would begrudge that - then that another life will be saved as well.

For us patients needing heart and lungs, it pushes us further down the queue though, which means there is a likelihood we become too unwell for transplant while we wait. On the one hand we have good medication, which keeps us out of hospital and stabilises us for a time, but when the medication fails, there are no more options. I am lucky in that Papworth Hospital and their Transplant Team are dedicated to giving their patients whatever is the best option for survival, when some hospitals have given up on this ethos and abandoned undertaking heart and lung transplants full stop. Nevertheless, the Transplant Team have to adhere to their commitment to the urgent heart list in the first instance, but they do keep assuring me that miracles do happen and there are sometimes opportunities for a heart and lung transplant to be undertaken, so I keep waiting in hope.

It just seems a bit unfair that if things start getting a bit more critical, there is no urgent list for the heart and lung patients as well and for me, the transplant team will have to resort to a double lung transplant, which will be a much more complex operation in my case, a harder recovery and a poorer prognosis. I am lucky to have this option at least though, as for some patients waiting for heart and lungs, their heart condition means that just a lung transplant isn't an option.

We can only hope that something is done soon to increase the number of people signing up to be organ donors, currently 90% of people would accept an organ if they needed one, but only one third of these have actually signed the register. I will admit freely that I was one of these people until I needed a transplant and then I signed the register, it is difficult to feel connected to these issues when you are not affected by them and that's why the 'opt out' scheme is being brought about in Wales and currently being debated here. I firmly believe too, that if the 'opt out' scheme is brought in, then there definitely needs to be something in place for people who just do not want to be organ donors for their own personal reasons, moral reasons and on religious grounds, everybody should be respected; however, I also think there are a lot of people like I used to be, not really that aware or interested, but probably happy to help if they were actually given the forms to sign or just 'opted in' to do it.  Whatever, we urgently need to increase the organ donation register, whichever way it is done. More importantly, telling your family that that is what you wish to do is also crucial, as family refusal to donate a loved one's organs is at least 45% in the UK and the highest rate in Europe. If families are aware of their loved one's wishes, then the donor rate could be increased dramatically.

The campaigns and debates rage on and as a patient waiting for a transplant I am grateful to ITV for the programme last night promoting the issues relating to organ donation, and meanwhile those of us affected by this will do our own bit of campaigning and just keep waiting in hope.


                                                    www.organdonation.nhs.uk