|My niece and nephew, Ruby and Oliver|
|The Royal Family Graham!|
As it turned out, I was extremely well for a day or two before they came and on the day and I managed to plan and cook the whole meal with some help from Rob. This gave me a real boost and gave me some confidence back that I can still cook and entertain my friends on a good day and with a helping hand and my friend still got a meal cooked for her birthday, so all in all disaster was averted. I still long for the day when I could just go out worry free though.
|The beach huts at Wells|
I was ready to be discharged around half past three, which was good going, when the doctor came over and started saying something about how well I am doing and questioning whether I should be on the transplant list. I found this extremely disconcerting. It had been a huge process to go through transplant assessment and have your options - most of them pretty poor- laid on the line. Having been advised that transplant is a good option for me considering everything and having been placed on the live list and then living with this burden for the last nine months, my head was suddenly swirling round in total confusion. I suppose I should be pleased at the fact that I am stable, and I am, but I am struggling that someone who does not really know me, is saying this. I think it was just said as an afterthought and not intended to cause distress.
The Specialist Pulmonary Hypertension Nurse is on the ward, who we know well and can see that Rob and I are looking distressed and I think she stepped in and saved the day by getting the consultant to come down and speak to us. The consultant came to see us and smooths things over and really just confirms that, as is the usual procedure, she will inform the Transplant Team of my good progress.
|Early evening on Blakeney prom|
There is a little doubt in my head now. Am I too well or not? How will I feel if I get the call? Would I be able to get on with my life and Rob with his if I wasn't on the list? The reality is that if I did come off the list now, I would only have to go back on it at a later date. Would this then be too late? I'm in two minds whether to ring the transplant team or not for reassurance but decide it better not to create a fuss over something that was supposed to be sorted and I would wait until I went to the clinic again.
I reason in the end that being on the list is still the best option unless I'm told otherwise by the staff who know me best.
After this we take a holiday in Norfolk, up on the North norfolk coast, we rent a cottage for the week and make it home from home. The weather is good, about the only place in the country with sunshine and we have a fabulous week.