Tuesday, 31 July 2012

The Olympics Summer 2012

Excitement at Lee Valley
It is Tuesday and we are supposed to be attending the men's canoeing final at Lee Valley. The weather forecast is for heavy rain all day and after much consideration and deliberating I have decided it will be too much for me, it was always going to be a challenge for me anyway and the thought of feeling unwell and sitting in pouring rain for a few hours doesn't really seem a sensible thing to be trying to do. We have resorted to plan B, Rob has phoned the helpline to check that the tickets can still be used, we had a wheelchair ticket and carer's ticket as well as two ordinary tickets and he is assured it will be fine to still use the tickets without me. So Rob is off to Lee Valley with Sarah and Rose and Rose's boyfriend, David. I am just so relieved he is still able to go and I know he will probably be able to relax and enjoy himself with the girls and he wont have my needs to constantly be worrying about either.

I thought I may feel frustrated with myself for not managing to go, but I think I am beginning to learn that some things I can do and others are too challenging at the moment and there is no point beating myself up about it, there is nothing to gain in that. Today I am just going to have some quiet me time and I will be watching the canoeing in the comfort of my own home with no anxieties and I will be scrutinising the audience for my family!

When I saw the doctor and nurse at Papworth last week, they gave loads of advice about the skin allergy that I seem to have acquired and I have tried out some new products to see if it helps. Unfortunately I seem to breaking out in redness everywhere and my legs are worse than ever. Funnily enough the only bit that is looking all right is under my dressing on my Hickman Line site! I feel like one big itch at the moment and it flares up badly every time my skin flushes with the Epoprostrenol drugs, which is all the time really. Maybe I should cover myself in Allevyn Thin dressings! I can only put it down to the new treatments I've been trying, so I am now going to have to go to the GP, appointment is booked for after we come back of holiday in the Lakes and in the meantime I'm back to the old Sudocrem and plain water for the bath!

I sometimes feel that coping with PH would be fine, if it wasn't for all the other more niggling little problems that you get associated with having a major illness and taking so many drugs. It is these little things that can make your life feel miserable and can get on top of you.

On Friday we are off to The Lakes for nearly two weeks, coming back just in time for the A level results. Rose and David might come and join us for a few days so that will be really good if they can. I've written a list of some new places I want to see, Lowther Castle and Leighton Hall being two of them. If we get fine weather I would like to visit St Annes where I used to spend holidays as child, it has a lovely flat promenade and I like to go on the pier and take my chances on the penny falls! If we get some good weather we will definitely be taking a picnic to Coniston Water and hopefully Rob can go kayaking. So lots of things I know I will be able to manage more easily to look forward to!

Sunday, 29 July 2012

A Routine Check With the Transplant Team July 2012

Late August in the garden
On Monday I went back to see the Transplant Team for my routine three month check. All went very smoothly except we had to wait three hours to see the doctor, because one of the other doctors supposed to be running the clinic was still in surgery.

The doctor I did eventually see was a doctor I knew from the Pulmonary Hypertension ward, so he knew my history. I was able to ask him the questions that had been swirling round in my head since my last visit to the Pulmonary Hypertension team. Mainly my concerns had been about prioritisation. The prioritisation system goes like this: heart and lungs come available in the Papworth region, if there are any patients who match who are on the urgent heart list at Papworth, then they are offered the heart, if not then the heart has to be offered to all the other centres to patients on the urgent heart list. If there is a match on the urgent heart list, the heart goes to them, then the lungs are offered to another candidate, firstly to anyone waiting in the Papworth region. If there are no candidates for the heart on the urgent heart list and I'm the only match in the Papworth region, then it will be offered to me together with the lungs. There is no urgent national list for just lungs or heart and lungs!
My favourite spot for lunch

How on earth I will ever get my heart and lungs when this system is in place seems virtually impossible to me, but I am assured that heart and lungs do become available, but obviously this is why the wait is usually longer, on average two years. I have been listed for heart and lungs, rather than just lungs because my PH is stable at the moment and being in this position it is considered I may be able sustain the wait.

My favourite visitor

So the outcome of my visit is that I will stay on the list for heart and lungs, an appropriate option as I am fairly stable at the moment and there is possibly a long wait involved. Plan B will be to switch to just a double lung transplant should my situation deteriorate. A double lung transplant is a riskier operation for me because of my dilated pulmonary arteries and I am told recovery will be harder. There is still funding for a third oral therapy in place too while I wait for the transplant.

I am happy with this outcome and satisfied that a heart and lung transplant is definitely still the way forward.

The Olympic Games are now on us and we enjoyed a really good evening with friends watching the opening ceremony. Their daughter was dancing in it so it was an exciting eveing for them. There were also other friends of our friends there, who made a lot of effort to chat to us. It was clear they had no prior knowledge of our circumstances and it is always a dilemma what to say to people when they question you about what you do for a living and how you fill your time. We have found in the past that it can be a complete conversation stopper to come straight out with the fact you are waiting for a heart and double lung transplant. There doesn't seem to be an easy answer for this one. During this evening, because Rob avoided mentioning it at the outset, because it is a bit of a show stopper to mention this when first meeting someone,  it seemed to get more and more difficult to mention it all and then he found himself spinning some yarn about taking time out of work and having a breather for a while. I was finding great amusement in finding him digging himself deeper and deeper into a hole!

A mini heatwave this week
We are supposed to be going to see the canoeing final at Lee Valley on Tuesday and I am feeling very apprehensive about it, although we've organised parking and tried to plan carefully, I'm a bit bothered about being vulnerable in large crowds, frightened of not feeling my best or taking a turn for the worse once I'm there and then we can't just leave so easily as there will be shuttle buses, queues and crowds to contend with. I'm especially frightened of getting my stomach upsets and nausea and having to cope with the crowds and queues if I need to deal with it. Today we have watched the canoeists competing for the finals and we took note that the stands were open and none were under cover, the forecast is now heavy rain all day, so added to my anxiety is whether or not I'm really fit to be sat in the pouring rain for several hours. If I'm honest the answer is really 'no', I'm not really that fit to be going anyway. I doubt I will go now, but will decide on Monday. I suppose I have put all the 'disabled' facilities to use, but at the end of the day I am sick really not just 'disabled'.

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!


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.

A Very Pampered Stay in Rutland May 2012

Hambleton Hall
Shortly after we came back from the Cotswolds, we decided to try and give staying away in a hotel just one more go. I have always been an avid reader of the Sunday papers' travel pages as Rob and I love travelling and finding new places to go. Just before I had fallen ill I had read about Hambleton Hall in Rutland and spending a weekend in Rutland. As Rutland is only about an hour or so away from us I had kept a cutting of the article thinking we could visit for a night one weekend if our busy work schedules allowed us. I saw that they had a special offer on for May and as it had always been on my wish list of places to visit, we decided to watch the weather and if it stopped raining try and book a night there. As it was only an hour away and we only wanted to go for one night, I thought it would be manageable. We wouldn't have to set off until after lunch, when I would usually feel better and the diuretics had finished their work and the following morning I could save taking the diuretics until I got back, therefore keeping things relatively easy. The weather perked up and we booked a night on line on a Saturday to stay on the Monday night. On Sunday we got a surprise e mail, Rob had asked for a superior room because of my problems and they advised us that these were all full, however they would upgrade us to the cottage they had in their grounds for the evening if we liked. This was even better than ever, with my illness considered.

When we got there, the cottage was absolutely stunning with its own panoramic view of Rutland Water and   the hotel gardens. We were well and truly pampered and I managed a very slow walk down to the water, luckily there was a bench to sit on before I made my even slower walk back. The hotel gardens are absolutely stunning and for a couple of days I think most people would be just happy to wallow in the beauty of the surroundings. Dinner there is first class, but a very creative menu and therefore for someone with my stomach difficulties perhaps not the best place to eat, however it was delightful for Rob and I managed to make it through with little difficulty. On reflection, next time I dine in this type of place I will just ask the chef beforehand if they can do something from the menu, but in a plain version then I will have less angst.
Our 'palace' for the night

Rape fields near Oakham
We sat in the gardens before dinner as the weather had come so lovely and after dinner we went back to our cottage, a real retreat, which had a log fire all prepared for us, it wasn't that cold, but we lit it and put on some classical music and just watched the fire crackle and burn. A really memorable and truly magical evening for us both. During dinner the proprietor had come to chat to us. We don't usually tell people why we are away, but they had specifically asked us if it was a special occasion and we usually say no, but this time Rob thought 'what the hell' and told them I was waiting for a heart and double lung transplant and that I had been wanting to stay at the hotel for a year or two and at last I was well enough to make the trip. The proprietor was a really lovely gentlemen, who told me of two friends he had who had undergone heart transplants and both were doing well. Just the type of story I like to hear, its always encouraging to hear of the successful transplants.  
This is very nice - cheers!

Gardens at Hambleton hall
The following morning, staff brought our breakfast across to the cottage and we spent a lovely morning enjoying the grounds and views and beautiful sunshine. We had our own private balcony to enjoy. Feeling well and truly pampered, we went on to visit Oakham, where I had a short walk about and browse in some very lovely shops. I managed to pick up some birthday treats for my friends (as well as some for me) and then we went on to Barnsdale Gardens. This was very wheelchair and disabled friendly and the gardens looked very attractive in the glorious sunshine. We were just in time for some lunch and sat outside. I love enjoying being outside and being somewhere new, it is a real tonic, beautiful gardens and birdsong cannot be rivalled . We then went on for an afternoon tea and ice cream at the Rutland Water Visitor Centre, before setting off back home.
Barnsdale Gardens

Fishing on Rutland water
The whole two days had felt magical and I felt we had been well and truly pampered at Hambleton Hall. It had been very much worth the long wait to go there and although I have ticked it off my list of places to go we will most definitely be going back and most definitely be asking to stay in the cottage