Friday, 28 March 2014

Six Months On ...

It is Mother's Day, a very special day for many. It just so happens to be exactly six months now since my life saving transplant, so a very poignant day for me and making me more thankful than ever for Mother's Day. 

The transplant feels some time ago, but then not long ago: it is slowly paling into the past, but then again still raw. It has been an incredible journey and we have been amazed at my recovery and the new lease of life I have been given by my donor and their family. 

It is now officially spring time, the clocks go forward this weekend and we will have the lighter nights, this weekend has been mild and sunny so far and the garden has burst into colour. I'm feeling so much better now, it's as though the huge improvement in my health has coincided with the end of a long wet winter. Spring always signals new life and here I am, lucky enough to be enjoying a new and better life. 

I have been given much more than I'd dared ever hope for. Others who had had their transplants had told me I would be running up hills again and travelling again and would feel much better, but I wasn't quite so sure this would be possible. I just hoped, after seeing the difficulties that some of my other friends faced with their transplants, that I would be as well as I was before my transplant, but maybe have a better prognosis and at best I hoped to feel marginally better. I was just trying to be realistic I think and didn't want to end up disappointed. 

Instead the outcome of my transplant has completely shocked me. It hasn't always been an easy ride and there are still some issues to resolve and no doubt there will be more to face in the future, but for now there is an incredible difference in my health and in what I can now manage to do and achieve in a day. For now, it is a simple case of living in the moment and enjoying each day as it comes. 

The wheelchair has now been relegated to the back of a cupboard and I am able to walk for a good few miles at a time and at a good pace. All the bathroom aids - stools, chairs, rails, steps - have joined the wheelchair in the back of the cupboard and I am bathing and showering like any normal person. I am driving again and have gained my complete independence back. I can go out and about on my own again confidently, my anxieties about my illness and feeling so unwell and unsafe when being out on my own have completely lifted. I'm settled into a good routine with my medication, there are no intravenous drugs anymore, no nebulisers or restrictive drugs such as diuretics. 

I am trying to keep my physio going, so I use my exercise bike and Wii Fit regulary and try and keep active throughout the day. I try to get out for a decent walk as often as I can too. I lost a lot of weight after my transplant and have struggled to put it back on, but I've managed to get where I want to be now  - with the help of a few creme eggs and cream teas! Cake and creme eggs aside, I'm trying hard to eat healthily too. My energy levels are high now, gone are the days of rest, rest, rest all of the time, now it is just taking a short rest from time to time. 

I have always concentrated on exercise, eating and rest since I came home after my transplant as I really believed it was my key to getting myself healthy again and it seems to have worked. 

There are lots of things that were hard at first after the transplant, which have now got easier. The medication and its effects on me seem to have settled. I had to be really careful with what I could eat at first, not only because of food that is at more risk of infection, which I still don't eat, but because of how the medication affected my stomach. Now some of the medication has reduced, I am much more settled and have been able to introduce more foods to my diet and am eating normally again. There was a time during those first three or four months when I was known to whip a cheese butty out of my bag while we were out because that was all I could manage! 

The medication and the trauma of the transplant also caused my sleeping patterns to go completely haywire. For months I had insomnia and would lay awake for hours on end every night feeling like someone had plugged me into the electricity. The doctors assured me this was all quite normal, so I decided to just ride this one as calmly as I could and eventually as things settled down, my sleep improved too and now I'm sleeping normally most nights. I think having better sleep has added to my sense of feeling so much better. 

I know I have had a lot of good luck on my side and I appreciate and value every day as each day comes. Today is a special one being Mother's Day and it feels wonderful to be celebrating it with my family, feeling so well once more and with hope for the future. 

I want to thank everyone at Papworth for all they have done to get me this far, at times they have moved mountains and they are always there ready to give support. 

I can't help thinking of my donor at this time too and I know the family will feel their loss on this special day. They are in our thoughts and prayers. It is a bittersweet and a very emotional day. 

I hope from my blog that you can see first hand what a difference organ donation can make to someone's life.  I have friends still waiting to have life saving transplants too. Their lives are on hold as they are having to wait far too long for a chance of a new life, because of the shortage of organ donors. Please sign up to be an organ donor  - the link is below. 

Monday, 24 March 2014

Spring, Daffodils and a Very Special Person

The end of last week was devastating as our PH community learned that our dear friend Lynsey died unexpectedly on Wednesday. It has been such a shock to us all, as a few of us were only chatting to her that very day. I have known Lynsey for almost four years now, spoke to her regularly every week and she gave me lots of support in my early days of diagnosis and supported me throughout my transplant. She readily supported many others, who were struggling with this most cruel disease too. 

Lynsey was going through the transplant process too, which is a difficult one and was carefully considering being listed for her double lung transplant. I think all our hearts go out to her dear husband, Joss and her family and they are all in our thoughts and prayers at this terrible time.

Spring is officially here now and the daffodils are out in abundance. My favourite poem has always been 'The Daffodils' by William Wordsworth. I think it is because it's about getting a glimpse of those first signs of warmer weather and longer days, the signs we all long for after getting through the winter months. I love daffodils too, they are so warm and bright after the dismal and cold of winter and their cheerfulness makes you feel optimistic for the joys of spring and summer. There is a promise about them, when they suddenly appear everywhere. I also love this poem because it was written in the Lake District about the daffodils on the banks of Ullswater.

As I think of this poem, I think of Lynsey, because it was only the other week that she messaged me to ask all about the Lake District, as she and Joss were thinking of holidaying there and I had just come back from the Lakes, where I had bought myself a copy of 'Daffodils'. I am always going to think of her now when I see a daffodil this spring.

Seeing the daffodils this spring time already seemed all the more special after the storms of autumn and winter we have had. This spring has suddenly become an even more poignant time to just value life, our loved ones and all that is around us. For us this weekend, we had Rose back home again and we have enjoyed some quiet family time. We had a lovely walk around Grantchester Meadows and we visited Sarah and Oli in their new home. We enjoyed lunch and a lovely afternoon with everyone at the Papworth PH Matters Supprt Group too. Just simple special times with people we care about.

Last Wednesday I had a good visit to clinic and we celebrated afterwards by visiting Wimpole Home Farm and enjoyed a lovely walk around. The sun was out and there were banks after banks of daffodils. The birds were singing and there were blossoms, hyacinths and cyclamens on show too. It was the day we lost Lynsey, beautiful, warm, sunny and full of life and hope and that is how I will remember her. I think as we all grieve her loss, she would want us to pick ourselves back up again and live our lives to the fullest we can. 

Thursday, 20 March 2014

In the News

Throughout my transplant journey Rob and I have been keen to take opportunities to promote organ donation and the benefits of transplant and we have tried to keep our campaign for more organ donors in the news locally whenever we can. This is a cause very dear to my heart, not only because of my own life saving transplant and the arduous wait I had to endure because of the lack of organ donors, but because I have personal friends who are still facing the same predicament and there are still thousands of people waiting for a new chance in life like myself.

There are circa 10,000 people waiting on the transplant list; 3 people die each day while they wait; over 90% of the population would take an organ if they needed one, yet only 30% or so have officially signed up to the organ donor register; most people are in favour of organ donation and just haven't got round to officially signing up; many people do not share their decision that they wish to donate their organs with their families, leading to a difficult and heart breaking decision having to be made at a most harrowing time and often ending in refusal to donate organs, because it is just too overwhelming to cope with.

In my case, the wait for a suitable donor was also exacerbated by the fact that I needed both a new heart and a pair of lungs. To get a full set of three organs like this that that are fully functional is difficult - one of the pair of organs is often unfit for transplantation- and more often than not organs need to be split up to save more than one life. There is currently an urgent list for patients in desperate need of a new heart and on the news recently there have been calls for a similar urgent list for lungs. It is quite right that those in most need should take priority over those who are able to wait for longer, but at the moment there is no urgent list for those waiting for both heart and lung transplants. They are unable to be placed on the urgent heart list, because they need a pair of lungs too and if an urgent lung list were to be put into place, they will not be able to go on this either as they are in need of a heart. It is an issue that needs addressing, but as reported in the news only last week, only 6 heart and lung transplants were carried out last year, so we are a very small minority group of patients with little voice.

The only way forward at the end of the day is to keep on trying hard to increase the number of organ donors, then everyone can be given a fair chance of survival; by the look of the statistics there is still a long way to go when only roughly 33% of the population have officially signed up, so there is much potential still to increase the numbers on the organ donor register. So with this aim in mind, Rob and I are always keen to take every opportunity to try and promote the advantages of organ donation and try to get people thinking about it and signed up to the organ donor register.

In January we were approached by Hertfordshire Life magazine to feature in an article about Knebworth. This was published in the February issue and the online link is below. The article features three Knebworth residents and their stories, including myself talking about my transplant. 

The other week I was interviewed by the Hertfordshire Mercury for an article in a series they are doing on saving lives. The first article in their series was about the importance of organ donation and signing up to the organ donor register. The feature highlights the shortage of organ donors and how organ donation can transform lives.

When the Cystic Fibrosis Trust released their campaign for more organ donors and a fairer distribution of donated lungs for those most in need last week, Rob was asked to speak to Bob FM Home Counties, our local radio station, about the benefits of transplant and his interview was aired throughout the afternoon and evening.

We are hoping that with this continuing media attention some people will be motivated to sign up to the organ donor register and we can help shift those figures for those signed up to the organ donor register higher than they currently stand. Let's hope for more lives to be saved and for many more people to be given the wonderful new chance in life that my donor has given to me. 

Sunday, 16 March 2014

Take a Walk on the Wild Side!

Following on from my last blog and our wet and windy walk around Tarn Hows, the weather perked up for the rest of our time in Cumbria and we made the most of it, getting out and about in the sunshine. I managed to walk a good few miles each day and just enjoyed savouring all the beautiful scenery, countryside and wildlife. I had set myself a goal of trying a different walk each day for the rest of the holiday, trying to build up my fitness and strength even more. 

First stop was another of my favourite places, Arnside, on the south Cumbrian coast. We took a look all the way down the coast path, something I haven't managed for years. 

A view of the viaduct

Lonesome boat! 

Slippy rocks and mud flats - not an easy walk in your wellies! 

Thanks to my donor I was able to to manage this walk and watch the sun go down while I wandered.

We were rewarded with a most spectacular sunset

Next up, we visited Leighton Moss, RSPB reserve. This was featured in BBC's Autumnwatch last year. I visited here last summer and could barely walk round and could only manage to get to the nearest bird hide. Guess who was marching round this time and doing the whole rounds, visiting all the hides on the site? 

I could never have dreamed to walk all the way down here and back - and that was just the beginning bit! 

A few friends joined me on my travels. There are supposed to be rare birds here such as bitterns, but they didn't come out for me. Never mind, they missed me too - it was reported in the news this week that just 6 heart and lung transplants were done last year and I was one - I think that makes me a rare species too! 

A cheeky robin! 

This female pheasant decided to climb on a fallen tree and pose perfectly for the camera!

Another poser! 

On our last day we walked around Levens Deer Park. The last time I came here was just before I found out I was ill. I couldn't understand why I was so tired and had to keep stopping. When I finished the walk I almost fell in the car with complete exhaustion and had to go to bed when I got home. I thought I was just unfit! Little did I know what was to come and perhaps it was just as well! 

Here I am though, back again, well I didn't think I'd get all the way up here once more! 

Even the deer were surprised to see me! What's she doing back? 

Beautiful views.

Followed by yet another glorious sunset.

We finished our holiday with a visit to my mum's in Lancashire. We met up with my sister and her family and enjoyed a lovely Sunday afternoon catching up on all our news and being entertained by Ruby and Oliver, my niece and nephew. It's always great to see them all. We took my mum out to Skipton for the day on Monday and had a lovely walk around the town and canal paths. 

Meet Rosie and Jim! 

It was a jam-packed week, where I began to realise I am doing more and more, not only walking a lot further, but achieving a lot more in a day. When I was ill, it was a case of choosing to do one main thing in the day and that would be all I could manage; now I'm managing to be out for hours on end, not needing to rest too much unless there is a cream cake and a cup of tea beckoning! It is all very hard to believe still.