Monday, 16 July 2012

National Transplant Week July 2012

Hurray they are finished!
Rose has finished her A levels, I cannot say how relieved I am that she has got through her exams and I did not mess them up big time for her by getting my transplant call. Another milestone we have managed to get through, now I need to get her to university and I am turning my thoughts to how I might physically help get her there, the taking her stuff there and unloading everything, helping her set up her room. I'm not going to be able to help her like a normal mum and this thought upsets me, but we will think on it and I'm sure there will be a way round my managing to be there and do something for her when the time comes. Rose has a party for lots of her six form friends and we are kept busy planning this and getting the house ready for the onslaught. Of course it is going to rain, so the conservatory is cleared and Rob puts up two gazebos and a big piece of tarapaulin over the pergola so he can barbeque for them all in the dry and they have room to sit and move about in the garden and keep dry. It keeps us busy and its a lot of fun and I think the kids had a really good time. If we had both been at work, we wouldn't have been able to do this!
Busy bee!

My skin is beginning to be very itchy and I seem to have excema breaking out all over, this has never happened before and I wonder if its the drugs again, I blame everything on them. I know I will probably end up having to go to the doctors, but keep putting it off as I've had enough of doctors for now.

It is National Transplant week and I've posting lots of posters, pictures and messages from the National Transplant and Organ Donors website on my facebook. I hope my friends don't mind, but if I don't do it when I'm in the position I'm in, then nobody will. We have been invited to Papworth by the Transplant team to attend an afternoon tea being held for National Transplant week. They have invited patients who live within easy travelling distance, mainly from the Anglia Region to attend.
July garden

When we arrive there is a lovely marquee in the grounds of the hospital nearby the duck pond, but of course, the weather has been inclement again and they have had to keep it fully covered, however it is set out beautifully inside. The transplant staff greet us as we arrive and I do not know some of the co-ordinators, but I am impressed to find out they know exactly who we are.  We are seated at a table with others waiting for various transplants. The majority of patients attending are ones who have already had transplants though and this feels very encouraging, that there are so many who have been through the whole process and beyond and are here looking fit and well.

We take part in an exercise to discuss how the Transplant Team at Papworth can improve their service for us and this is a difficult one for all of us as we are all indebted to staff for what they have done and are doing for us and their service is second to none. We are encouraged however, to 'nitpick' and assured they really want to try and improve things for us.

Sunday afternoon at Levens Hall
We have a lovely afternoon tea with buffet and very tempting cakes and we get chance to talk with other patients who are going through similar things to us and patients who have been through the whole process. The transplant staff also make a huge effort to chat to us and spend time with us. It is really lovely to be here in a social context, rather than be here because I am ill or having to be prodded and poked about for the constant tests that are needed.

At the end of the day, a lovely lady pops over to me to chat, she had been told I am waiting for a heart and double lung transplant and she had had a very successful heart and lung transplant a few years ago. She was doing really well and leading a normal life again, including travelling abroad. For the first time ever I began to feel that there would be life again after all this illness and major operation that is to come and I could be back to near normal again. There was also a man there who had had his heart transplant twenty five years ago and was now in healthy old age, something I can't really get my head around to inspiring to now, after all we have been through.

So we came away from this event full of hope and full of inspiration, all in all it could not have been a better week for me, National Transplant Week!

Rose had gone off to Magaluf with her pals, so we decided to head up to the Lake District for a week until she returns. I am feeling really well and we enjoyed having some friends visit us. We took them to our favourite pub for dinner, The Strickland Arms at Sizergh, and all went well, no silly tummy problems, just a fairly normal weekend with friends. It feels so good when life is like this.

Of course, it is raining hard and forcast to rain all week, but we still hope to get out and about and plan to visit my mum and dad for the day during the week.

When we get back there is lots to look forward to, we have tickets for the Olympics, the men's canoe final at Lee Valley, I am just waiting for my disabled parking to come through then I'm hoping I will be well enough to go. It should not be too arduous for me, Lee Valley is only an hours drive from us, we have planned disabled parking and the event is only on for a couple of hours, the only event for that day. The girls will be coming as well, so I will like that. I should be back home by early evening. We have a wheelchair ticket, so I will be taking my chair with me to make the whole experience easy going for me. We are really looking forward to the whole Olympic thing.

The topiary gardens at Levens

At least we having a Great British Summer, with all the events that are going on from The Jubilee, Wimbledon, Grande Prix, Euros and now the Olympics, despite our Great British weather!

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