Friday, 29 May 2015
It takes me back to the start of all this - to 'that' day, not quite a whole five years ago yet - and being sat down and told, 'You aren't going to live for very long.' What goes through your mind when you hear that? Your future - that's what - that future you suddenly aren't supposed to have anymore - wiped out by just a few words. What do you envisage as part of your future?
For me it was my family that automatically sprang in my mind as the consultant spoke and I could barely listen, or more like I listened, but couldn't hear properly because of all the thoughts suddenly popping in my head. What about Rob? What about the girls? I won't be there, I won't see them do all those things we are supposed to do together. All those milestones: birthdays - wouId I even see my 50th? Would I see Rose's 18th or Sarah's 21st? Then those things like wedding anniversaries: our twentieth; our twenty fifth... then weddings? The girls' weddings that may or may not be somewhere in their futures. My thoughts swirled. These things were being taken away. Just like that. Done. Gone in just hearing one sentence.
Then every time there was a crisis and I had to fight to survive, it would be all these things that would surface again. Every milestone you want to fight for; every milestone you desperately want to reach and that's what made me fight. In turn every milestone you reach becomes a massive achievement, because you weren't ever supposed to reach them and then you want more and more. Every one of them is precious and has to be celebrated. Living life has to be celebrated. These moments are so precious and cannot be taken for granted.
Thanks to the best and most expertise of care from a wonderful hospital and to my donor for the amazing gift of my new heart and lungs, I've managed to reach so many new milestones and now it is just a week to go to Sarah's wedding, something I still cannot believe I might see. I almost try and refrain from getting myself too excited when there is something good to look forward to, just in case I have a blip - it happened so many times while I was ill. You almost become numb to excitement and disappointment so you can cope with focusing on the next thing you have to deal with. I usually post after I've managed to do something, but this time I'm bubbling with too much excitement...
We are all so different in what might drive us on when times are hard - what motivates you to try and get better - to recover and fight through those hard and difficult times?
This week's pics are the peonies in my garden
Sunday, 24 May 2015
Having a transplant requires ongoing medical care and medication for life. The immunesuppressant drugs that are required to keep you well and stop that awful thing called 'rejection' occurring need constant and careful monitoring by the transplant team, so hence I have routine tests every three months, including blood tests, sometimes the blood results come through and it means there have to be medication changes then more blood tests. I usually have blood pressure and weight taken, ecg, lung function tests and an xray. At my last few clinics my blood pressure has been rising...
I sit in the consulting room with the nurse at my GP surgery and she is helpful and thorough from the start. At last I'm having my 24 hour blood pressure monitor fitted. My Transplant Team have requested this following my last clinic visit in February.
It's taken a little while to get to this point. After clinic I'd been straight to the GP surgery to book a routine appointment with a GP who knows me. I'm told he's booked up for the next three weeks or so, but if I phone next week, they will be releasing more appointments. I try for two other doctors I've also met before, but they've left the practice, so I wait the week and get an appointment for four weeks time. With my complex health needs, I don't want a locum doctor. I think, hopefully, that I should be able to get it all organised and have results for my next clinic visit.
I will add, that should you need an emergency appointment, I have always managed to get one on the same day and this does seem to be the easiest way to get a quick appointment, but it seems a misuse of the system for something non urgent.
Increased blood pressure is a normal thing to expect with a transplanted heart, the immunesuppressants we have to take help cause this and most of us have to go on blood pressure medication, so I am not too worried, as I've been expecting it. I just want to get it sorted and in control before any real damage is done.
While I wait for my appointment someone from the surgery phones, as they've got the letter from Papworth requesting the 24 hour monitor. I'm advised there is more than a three month wait, so they will put me on the waiting list... A few weeks on, I have my appointment with the GP, he is very understanding and wants to 'optimise my treatment' and an hour later I've an appointment for the monitor in two weeks time, instead of having to wait until June or July.
The nurse is keying all the latest information from my clinic letter into the computer, she is asking me questions as she posts, then proceeds to put in figures for my kidney function and turns and tells me,
'You obviously have kidney disease then?'
'Er, um, have I? I know my team have been looking at my kidney function, I had to go back for an extra blood test the week after clinic. No-one has ever sat me down and formally told me this yet though.'
'Oh well you have and not surprising after what you've been through.'
'Yes, I suppose so,' I reply. I knew that it would happen really, I've been told the risks, but it's a bit odd hearing it said out loud somehow.
I come home, a little worried, but not worried, as what may concern some nurses or doctors is often a different story when it comes to transplantation and what the transplant team think. I get my BP results - the nurse phones me up and faxes Papworth. It's too high and she efficiently organises my prescription for a new drug called Ramipril and organises some more kidney function tests and another appointment so she can monitor my care. I collect my prescription and my pharmacist is also really efficient, explaining the side effects and saying she too will phone me in a weeks time to see how I'm getting on.
So, from struggling to get an appointment, at least when I did, all was sorted and I'm being well supported. I think this 'appointment' problem at GP surgeries is a common one at the moment according to the press. Does anyone else have these problems? Fortunately we do have the emergency appointments at our surgery if I feel I really can't wait and the support is always good.
Luckily, I had my May clinic this week and I asked about the kidney situation. I'm in grade one chronic kidney failure with all I've been through and the harsh meds. It is mild and I'm not really noticing it and the blood pressure control will help things. My consultant is pleased with my progress though, it's being managed very carefully and as he says, 'Most people would rather have a heart that beats and lungs that breathe!' He is right as usual! I can't disagree - it is a small price to pay and I know that. I also know I'm lucky it's only mild, some of my friends are struggling so hard with kidney problems at the moment and I hope things will improve for them and get better soon. It puts it in perspective.
So another new drug to start and after my blood test results, a reduction in my Prograf (one of my immunesuppressants) a few more blood tests over the next few weeks and three more months until my next clinic. I'm happy and very lucky.
I'm now on a countdown to Sarah's and Oli's wedding - less than two weeks to go - excitement is building in our household - this is going to be one massive milestone to reach - one of the big ones...
This week's pictures are taken at Anglesey Abbey in Cambridgeshire.
This week's pictures are taken at Anglesey Abbey in Cambridgeshire.
Friday, 15 May 2015
We received an invitation in the post a few weeks ago. It wasn't the sort of invitation that most people will ever get: not an invite to a wedding or a birthday party or some other usual type of celebration. It was one of those invitations that you feel both priviledged and humbled to receive, because you know that you and your family have been so fortunate and blessed where others and their families haven't.
Our invite was to a service of remembrance and thanksgiving at Ely Cathedral so we could give thanks to and remember those who had saved lives through donating their organs. It had been organised by NHSBT Eastern Region for families whose loved one's had donated organs and recipients and their families. Not many families are touched by these unique situations and it was going to be a very humbling celebration for us recipients to come together with those who have lost their loved ones and generously said 'yes' at a most harrowing time in their lives to enable others like me to have the gift of life.
As a recipient of a new heart and pair of lungs - not just one organ, but three - I know I have been more than lucky to be offered a new chance of life and blessed that I've been able to recover and survive from a terminal and incurable illness. Receiving my new heart and lungs changed my life and my family's and also affected many friends and aquaintances - my donor's generosity and that of their family's rippled out far and wide and has left an everlasting legacy.
On Sunday we were pleased to attend this wonderful and very moving celebration. I'd been worried I would become upset and it might feel too emotionally overwhelming. When you've had a life saving transplant, there is never a day goes by where you don't think of your donor and what has been done for you, you are always grateful. It is like no other operation - your emotions are consistently heightened and intertwined with your physical well being, because of the precious gift you have received.
I literally stuffed my handbag with tissues and hoped for the best it wouldn't feel too much. When it actually came to it, the service was very moving, emotional too and I did need to fight a tear now and again, but above all - for me - it was uplifting and it felt an honour to be there amongst so many who had given and lost so much.
After the service we got chance to have tea and biscuits in the side chapel and it was great to meet up with so many of my other friends who had had transplants too. It was lovely to chat with some of our transplant nurses and doctors and meet new people as well - a real opportunity for our community to be together.
Afterwards I lit candles: of course one for my own donor who has given me so much; a couple for other friends who couldn't get to the service, but so much wanted to be part of it and thank their donors too; one for friends we've sadly lost along the way; one for those friends who are struggling hard against illness and one for those friends who are still waiting and hoping for a new chance of life.
Saturday, 2 May 2015
When we decided to make a trip back to the Lake District, my first thoughts with all the sunny weather we'd been having was 'Oh great I'll be able to see the bluebells - fantastic!' We earmarked a sunny day to go and find them and decided on Muncaster Castle, where I know there is usually a fabulous display in the woodlands.
I happened to check the website the evening before for the opening times and found out that the BBC were filming 'Flog It' there that day - we decided not to go there, as there would be crowds of people descending and I didn't fancy crowds and traffic jams when it was so lovely and sunny.
Instead I decided on Rannadale as I'd never seen the bluebells there, although we'd visited Crummock Water and Buttermere on many occasions, we'd never been in late April or May. I'd remembered seeing some stunning pictures of it in a magazine last year - a stunning display of bluebells on an unusual site on the edge of a mountain fell with the stunning backdrop of Crummock Water.
We checked out a map and found a circular walk of a few miles, which started in Buttermere village and took you up over the fells to them, then back by the lake to Buttermere. It stated there were stunning views along the way, so it all sounded perfect.
The day was beautiful, our drive to Buttermere was amazing - we passed Windermere, Rydal Water, Grassmere, Thirlmere and Bassenthwaite lakes. It was only once we got there that I realised we hadn't brought the map. We decided it couldn't be that difficult to find and knew the way to Crummock Water and double checked in the village we were heading in the right direction. It felt safe enough to do without the map - the day was clear and sunny and there wasn't much chance of bad weather setting in and with the stunning scenery it didn't really matter if we couldn't find them anyway.
We passed woodland - no sign of any bluebells there - and got to the hillside at Crummock Water and started heading up the pathway and hillside. I was beginning to get hot in the sunshine, but we had plenty of water with us. It was lunch time by now and Rob said we should stop for our picnic - I wanted to keep going a bit longer though as I felt we'd only just arrived. Onwards we went, we knew we were in the right vicinity, but there were still no signs of bluebells - only the Herdwick sheep so far and a few public footpath signs!
We climbed the fell side higher and higher following the path, perhaps they were in the next vale over the hillside? Eventually it was time for a rest - we found a grassy headland with beautiful views of both Crummock Water and Buttermere - there probably isn't a more idyllic place to sit and have your lunch!
With only two ways to go - climb higher or scuttle down a rocky pathway back to the road - it seemed the only way was to go up and see what the view was over the next hill - would the bluebells be there? Off we went, me now straggling behind and Rob leading the way. Where were they? Still nowhere in sight. Back down the path and we tried yet another hill. Hot and bothered by now I have to sit on a rock and have a long drink.
Two hikers pass by, struggling away up the hill, 'You don't realise how out of condition you are until you do something like this,' puffs away one of the ladies. I smile to myself, but just agree, 'Yes, I've given up for now!' 'If she knew what 'condition' I'm in she'd have a fit!' I think quietly to myself.
We know these bluebells are so near, but don't know which hill or pathway to go up or down next, so we grudgingly admit defeat and head back towards Buttermere ... we've walked miles by this time and most of it up the fells ... it is all down hill now, but I'm flagging and overheating. I've done too much and we have to stop in a shady glade out of the heat of the day while I try and cool.
We make it back to the road, we hear a helicopter in the distance and then sirens. Two mountain rescue vans come flying down the road towards Buttermere. There must be someone in trouble. I'm flagging now, but still a mile to go. I'm wondering if I'm being foolish and Rob suggests he carries on and brings the car, but I decide to keep on going.
I'm disappointed we didn't find the bluebells, but I cannot complain the journey was wasted, as the views have been amazing and totally breathtaking. I've also managed to achieve something I never could have done before my heart and double lung transplant - walking miles and mostly up hill. It was a challenge, but I did it thanks to my wonderful donor.
We arrive safely back in Buttermere and there is a lovely cafe where walkers and visitors can get refreshments. We enjoy a very welcome cup of tea sitting outside, relaxing and enjoying the late afternoon. I'm relieved I'm back all in one piece and taking a little comfort in the fact there is an ambulance sitting only a few hundred metres away waiting to see if they're needed for the emergency happenning on the fells above Buttermere.
Refreshed and now revived, we set off on our drive back, we head along the road past Crummock Water and spot a National Trust sign for Rannadale. The path looks flat and I decide I'm up for another short walk to see if the bluebells are in sight - I know it has to be a dawdle type walk and strictly no hills - we wander on...
Then we come upon a sign, 'The bluebells are an historic feature of Rannadale. Please leave for others to enjoy, avoid trampling or picking the blooms.' Haha! At long last!' I shout in delight. But where are they? I remember we are in the north of the country and the north of the Lake District and on the fells too, where the weather is harsh ... the bluebells are there, but you have to look hard. Their foliage is aplenty, but the blooms have yet to come. There are a few sparse blooms scattered about.
I try and visualise it as I dreamed off - a blue sea vista, sandwiched between the blue of the lake and the starkness of the mountains and fells and sky.
Two weeks more and they will be splendid... but I will be back in the South by then and still searching!
Click on the link for the walk we should have followed and to see the bluebells! We did more or less do it and would have seen them looking down from the hill where we had our picnic if they had have been out in full!