Thursday, 5 July 2012

The Jubilee Celebrations, hospital and Norfolk June 2012

My niece and nephew, Ruby and Oliver
Shortly after Hambleton Hall, some friends had asked to take us to a lovely restaurant called Auberge du Lac, which is near where we live. As the time approached for this I became more and more nervous about the whole idea and whether I would be well enough to cope, I simply do not know from one day to the next how I am going to feel and sometimes my stomach can start playing havoc within minutes of me being perfectly all right. This had been happening a lot recently and I was finding it quite debilitating and it is one thing trying to do this type of thing with Rob and the girls, where I can say look I'm really not feeling so good, can we go asap and I can make an escape, but to go with other people does put me under pressure when I know I just can't control what my body decides it wants to do. It is difficult to have to say to someone if you have just arrived somewhere that actually you are not really feeling that well after all and need go home, especially in the middle of a posh dinner.

The Royal Family Graham! 
I have to say many of my friends are very understanding about this, but at the same time I desperately don't want to be in this position in front of them, let alone a restaurant full of people and bemused waiters. In the end I have to tell my friends that I don't think I can manage it, I have had a bad few days. However, we invite them to us for lunch instead, so as not to spoil things, there is always an alternative to get round things usually!

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 
The Jubilee weekend was fast upon us. We had my sister and family for the weekend and although they were stopping at a nearby hotel to make it easier for me, we were doing all the meals. Rob trimmed the house with bunting and we really got into the spirit of things. Again, I was good during all this and thoroughly enjoyed the whole weekend, the flotilla, the concert, the carriage procession and even the rain! . Another boost, but done within the safety of my own home, which always helps. We even caught up with some old friends and had a lovely afternoon tea at their home, which was good too. 
Sea life 
Following all the weekend celebrations it was time to go back to Papworth for a round of tests on the day ward to see how I was doing. I had never been stable enough before to make it to the day ward, so this was going to be all new to me. Back to earth with a bump. I had to be there for eight in the morning, so didn't bother taking my diuretics as I wouldn't have made it as far as Stevenage without having to stop. Luckily this was another day when I wasn't feeling too bad. Tests started as soon as I arrived: blood tests, MRSA tests, echocardiogram, lung function tests, chest X ray, walk test, Hickman Line swab. All usual routine monitoring tests for someone with Pulmonary Hypertension and intravenous drugs. I didn't really recognise the nursing staff on this ward like I do all the ones on Duchess and Baron wards, but everyone was efficient and good natured. Fortunately tests showed I was still stable, although the doctor was concerned about the chest pain I keep getting and did a few extra examinations, but found no answers. I had never met this doctor before, probably because I hadn't been on this ward.
Seal spotting!

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.  
My situation is not any different to when I was listed, other than I have not deteriorated any more since and that I have remained stable since I have been placed on the transplant list. I have now had a seed of doubt sown in my head as to whether transplant is a good idea. I have a sleepless night, I could get a phone call any time and I keep mulling things over in my head. Rob decides to ring the Specialist PH nurse the following day to just check that I am still going to be on the list and our understanding of what was said. She reassures him that I am and it is would be up to the Transplant Consultants to take me off it. I am awaiting this doctors confirmation letter now and I think the incident has given me some questions I need to ask when I visit the Transplant Team in July. 
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.

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