Friday, 7 December 2012

Going Back to London After Two and a Half Years

The new look King's Cross
Recently Transplant 2013 contacted my friend and fellow PHer and transplant patient, Anne, to invite her to attend the All Party Parliamentary Group for Transplantation question time on organ donation and transplantation 2013 and beyond, which was going to be held in the House of Commons. They also asked her if she knew of anyone who may speak about their illness and what life was like waiting on the Transplant List. Now there is a little group of four of us, Anne, Sita, Stacie and myself who are listed for heart and double lung transplants and have PH. Anne wasn't too sure about doing it and Stacie, the youngest and liveliest of our little four would have loved to go, she loves her politics, but she had to get to London from Swindon and she could not get the help she needed to travel that day; Sita had family commitments with a young family, so that left me, the 'oldie' in the group to volunteer.

I didn't really think about it too much as I was all fired up about the shortage of organ donors following ITV's Tonight programme about Will Pope, who desperately needs a heart when there is a chronic shortage of donors. I was feeling fed up with my long wait for transplant and thinking that it was never going to happen and something needs to be done about it. So that was that. I enlisted Rob to help me, he is very good and used to speaking to audiences and at meetings through both his job and his acting.

There would be a variety of MPs, peers, patients, clinicians and other representatives from Transplant 2013's member organisations. This is their web link, although they are still developing the website as yet:  

View from Park Plaza
We decided we would speak together and after liaising with Transplant 2013's secretary, Vashti, it was agreed we would speak about our life before and after diagnosis of Pulmonary Hypertension and about going on and waiting on the Transplant List. It would be a good opportunity to remind everyone that amongst all the discussions, planning, organising and statistics that we transplant patients are real life people and with real illnesses. It was also an opportunity to raise a little awareness about PH and how in some cases it can lead to transplant, as so many people do not even know it exists and there would be a mixed audience here, but the real point of the exercise was to hammer home the need to keep organ donation high on the political agenda.      

We planned carefully how I was going to manage all this, with my illness I had not been into London for over two and a half years. Commuting is difficult and tiring in my condition and London is big and busy and a bit overwhelming when you feel ill. It usually involves a lot of walking and going up and down in tube stations, which is not really very manageable for me anymore; gone are the days for now where I used to commute daily to work in London, jump on and off trains and walk for miles. The meeting was at 10.30 in the morning, which is an early start for me at the best of times now.

The Atrium, Park Plaza
We planned to use my wheelchair, take the train in, use taxis and not the underground and stay in a hotel the night before so I could rest once we got there and get a head start the morning.

So after advising the Transplant Team that I would be away in London and travelling as light as possible, unknown for me with all my medication paraphernalia, Rob pushing me and my bag in my wheelchair, with a back pack on his back, we trundled along to Knebworth Station. Here we hit what we knew to be the first problem, a large flight of steps and no lift and no station attendant. Luckily, I can still use my legs and walk, so I did the steps slowly and Rob went up and down several times, lugging bags and wheelchairs. Basically if you are unable to leave your wheelchair and get out and walk and live in Knebworth, then 'the train says no' and your journey to London is curtailed at the station steps. It never ceases to amaze me what disabled people have to battle against. The train was then half an hour late and as it was freezing cold I began to struggle a bit, cold weather and wrecked lungs equals poor breathing and feeling dizzy and ill. I was relieved when the train came. As we journeyed in and I still didn't feel that brilliant, I began to question whether I was just being totally foolish even attempting to do this. I know Rob was feeling anxious for me too and I always pretend I'm ok, but he knows me too well.          

Feeling relieved once again when we got to King's Cross, my mind was taken off things as I was absolutely amazed at all the changes since I last went into London and I just really love the buzz of London. The new look station is remarkable and we were asked by staff over and over again if we needed assistance, which was a stark contrast to our local station. After a very cold wait for a taxi, I was beginning to shiver uncontrollably, we finally arrived at our hotel in Westminster. We deliberately picked the Park Plaza, which was just at the end of Westminster Bridge and a flat walk to the House of Commons that wasn't too far for Rob to push me in the morning. 

The hotel is a very large, busy corporate style hotel, something the size of a mini airport, not my most favourite type of hotel; yet with good, prompt and helpful service, I somehow quite liked the more impersonal atmosphere for once, as being ill nobody really notices or fusses over you and you can just get on with things at your own pace. The hotel has iconic views of Westminster Bridge, Big Ben and the Houses of Parliament. I noticed too, that we were overlooking St Thomas's Hospital, which gave me some peace of mind as I've not got the best reputation when it comes to needing a hospital!  

We didn't do much for the rest of the evening, just relaxed, rested, used room service and enjoyed the new surroundings and the superb views, anticipating the morning and relieved I had got into London in one piece. Travelling in to London had been enough for me for one day and I didn't want to tire myself out trying to go out sight seeing, although it was very tempting!     


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