National Transplant Week September 2015

This week has been National Transplant Week, which began on Monday. For us, the transplant activities started at the weekend. On Saturday we attended my friend Sally's party, which was a Hoe Down to raise money for Papworth Hospital's Transplant Unit. Sally had a heart transplant there just a few months after I had mine. Sally and I were actually able to join in the dancing, which is pretty amazing, as it's not long ago we wouldn't have been able to do this. We had a fabulous time and Sally managed to raise over a thousand pounds for our unit, which is fantastic.

On Sunday, we stopped off at Harefield Hospital on our way back home so we could take part in the Guinness World Record attempt to have the largest gathering of heart transplant patients. We didn't quite beat the world record, but we made a new European record of 185 heart and heart/lung transplant patients being together at the same time. We had a great time, meeting up with so many friends and meeting new ones. It was a very positive event to take part in and there was something amazing about being amongst another 184 heart transplant recipients. I think it showed what a fantastic and miraculous gift organ donation can be and was a fantastic way to raise awareness of organ donation ahead of National Transplant Week. 

It was lovely to spend some time with Lucy, Carla and Natasha and their families. 

Monday was another busy day when Chris from our local radio station, Bob FM visited us and recorded an interview about the shortage of organ donors and the benefits that receiving a transplant can bring. The radio ran the story every hour during the afternoon and evening, which was fantastic, as statistics show that the number of transplants taking place are lower than last year and that almost 17 million people still haven't decided whether to sign up to be organ donors or not. 

Our local newspaper then phoned for an interview and ran a piece on National Transplant Week and the world record attempt, which was great for raising more awareness. 

Every little bit helps spread the word and if it doesn't encourage people to sign up, I always hope it puts organ donation in people's minds and that they might at least have the discussion about it with their families. Obviously signing up to the register is extremely important, but many transplants aren't able to go ahead because families refuse to give consent. This is often because they have no idea what their loved ones wishes are and it is too hard a decision to face during such a harrowing time. Just having the discussion can make a huge difference. 

We rounded up our week by attending a meeting at my transplant centre, where we had chance to meet and speak with one of the doctors who has played a prominent part in the research and development of non-beating heart transplants and also chat with a patient who had recently received one. It is thanks to patients like this, who are willing to take new risks, that these huge advancements are made. We were shown the organ care machine and how it keeps the heart beating until it is transplanted, which was interesting. 

These recent developments are ground-breaking and are already making a difference by increasing the amount of heart transplants taking place. The doctor advised me that one of their next challenges will be to develop this process for heart-lung transplants, as currently many patients have to face and endure extremely long waits on the transplant list. I know this from my own experience having to wait over two years and I have friends who have had to wait much longer, so this will be an incredible breakthrough one day. 

If you wish to sign the organ donation register then click on the link posted below my blog post and remember to share your wishes with your family. 

Birthday Treats

Celebrations started with Sarah and Oli in the pub at weekend!

Today has been a very special one, as it's my birthday, my first one with my new heart and lungs. As I woke up this morning, the sun was shining and birds were singing and I knew I had already had the best gift I could have wished for. To just wake up and feel well early in the morning is still a very special treat for me. It was a bit like Christmas day again when I felt overwhelmed by what had happened to me and the fact that I had been given a second chance of life again with my family and friends.

On days like this it always comes flooding back just how lucky I have been. This time I could look back to Christmas and see how far I have come with my health just since then. At Christmas I was thrilled with how much better I was than before my transplant. Today, three months on and six months since my heart and double lung transplant, I look back again and can see the leaps and bounds I've made since just Christmas.

One of my lovely cards - a hand made one by a special friend!

I've totally got my independence back again now, I'm am out and about on my own and driving again. My exercise capacity is improving by the week, I have come from doing nothing to now doing some yoga, aerobics, cycling exercise and walking for quite a few miles. I'm back gardening in my garden too and shopping and I have to grudgingly admit I can now manage a huge pile of ironing and hoover and mop - but can you keep that secret for now - we don't want Mr G finding that one out! 

Yes, even hoovering and ironing is a joy! When things are taken from you, you just wish forlornly you could do them once more! 

One of my presses - the whole box set!

A gift from my sister - a vintage brooch

some silk slippers - a gift my friend brought back from HongKong

My body feels stronger than I can ever remember. It used to feel like there was nothing inside it, or if there was it was just sawdust - a bit like the scarecrow in the Wizard of Oz. I often felt like him, especially waiting for a new heart and he was always looking for one!  Now I can just feel strength inside, it feels heightened I think, because I just didn't have any left before. 

It is proof that transplant can be such an amazing miracle and what a huge difference it can make to someone's life. It is not only life saving, but life changing. Sometimes it is just hard to grasp how much it has done for me and how much it has given me. For now I've got my quality of life back and I cannot thank my donor and their family enough for what they have given me, this wonderful chance to do all the things I never dared hope I'd be able to do again. This chance to enjoy a truly happy and healthy birthday with my family and friends. 

We had a pub lunch with Rose today, then afternoon tea in John Lewis

Followed by a cheeky glass of wine later! Cheers everyone! Thanks for a lovely day!

Signing up to the organ donor register is an important thing to think about, discuss with your family and do. Remember you are much more likely to need an organ, rather than have to give one. Would you take an organ if you needed one? Think about it, if the answer is 'yes', then you should be prepared to give as well. I have friends waiting for heart and double lung transplants. They are having a really difficult time at the moment, they have been waiting ages for their chance of a new life like me. I know first hand how desperate things feel when you have to wait like this, being frightened that your call may not come in time, being desperate for that one call that can make you feel better. Please think about it and sign up to the organ donor register if you haven't already. The link is below.

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. 

www.hertfordshirelife.co.uk/out-about/places/life_is_for_living_in_knebworth_1_3434534

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.

www.hertfordshiremercury.co.uk/News/SAVE-A-LIFE-CAMPAIGN-Organ-donation-20140306143724.htm

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. 

And now it's June

'This is the month of June,

The month of leaves and roses,

When pleasant sights salute the eyes

And pleasant scents the noses.' 

Nathaniel Parker Willis

Another week has rolled by and June has arrived bringing with it, wall to wall and beautiful, warm sunshine. At long last. It has been a lovely week to get the garden sorted and tidied and cleaned up and all set for summer and a lovely week to spend just enjoying it. Rob has been busy blasting clean the patios and planting all the summer pots and baskets for me and because of the surge of warm weather everything is now bursting into life. We have planted a new herb garden and I've sown lots of wildflower seeds this year, so we will see what happens...

It has been a bit like 'Springwatch' in our garden as great tits and blue tits have been frantically flying to and fro to feed their chicks, which have hatched out in each of the nesting boxes. It feels quite a responsibility when you can hear them all squawking and then the naturally curious cat from next door is on the prowl: we don't wish to scare off either the cat or the birds, so we have been trying to carefully distract the cat. If the adult tits get scared they will abandon their nests. I was hoping to see the fledglings fly the nest, but the blue tits cheekily disappeared in the early hours of the morning one morning, long before I got out of bed and hopefully they are safe and healthy and now flying around the vicinity. The great tits are still hard at it, so I'm keeping an eye out for some action!  

We had good news about the next round of genes testing I had had done at Addenbrookes Hospital and the Genetic Consultant has confirmed that I do not carry the other main inheritable gene for PH, gene ALK1, so as a family I think we can rest easy now that the girls will be safe from Pulmonary Hypertension because of family history. There was only a very small risk I may carry this gene, but if it was confirmed I carry it, then the girls would have been at some risk. So that is the genetics testing all finished for now and the common causes for developing familial PH have been ruled out, unless they come up with something new or have a major breakthrough.

This week's wheelchair adventure was to Hatfield House to their annual garden fair. It was a lovely sunny Sunday and perfect for a picnic and a browse around the beautiful grounds and fair. Enjoy this week's photo show, the picture of the house is Hatfield House by the way, not mine just in case you were wondering!

  

June

The fountain murmuring sleep,

A drowsy tune;

The flickering green leaves that keep

The light of June;

Peace, through a slumbering afternoon, 

The peace of June.

A waiting ghost in the blue sky,

The white curved moon;

June, hushed and breathless, waits, and I

Wait too, with June.

Arthur Symons

It's now come round to June again, two years since I was referred for transplant assessment and I have been waiting 628 days for my heart and double lung transplant. The situation is beginning to feel beyond hopeless and we desperately need more organ donors and for organ donation to be part of our culture. Three people a day are still dying while they wait for a transplant and so far I have been one of the lucky ones being well enough to remain on the transplant list and keep on waiting the long wait, although tragically 1884 people will have lost their lives while I've been waiting. Still only 31% of the population have signed up to be organ donors and yet over 90% would accept an organ from someone if they thought they were dying. 

If you want to help and sign up to the organ donor register click on: www.nhsbt.nhs.uk/   

Sunshine and Flowers and a Bit of Cake

April is meant to be the month of sunshine and showers, but for me, this week has been sunshine and flowers, oh and perhaps a bit of cake!

Pudding surprise

Surprise flowers from a good friend

I have celebrated  a lovely birthday this week with my family and been thoroughly spoiled. We went out for a family meal on Sunday to the Red Lion pub in Welwyn and enjoyed a lovely Sunday roast. Oli got them to do a special 'Happy Birthday' pudding for me, which was a lovely touch. I didn't really think much of it when he disappeared to organise it while we were having drinks, other than to keep asking where had he disappeared to, saying that he'd gone in the wrong direction for the toilets and eventually they just told me he was talking to someone. Well he is always talking to anybody and everybody, so I bought that line easily and the pudding was a nice surprise! I nearly scuppered his idea though when I said I didn't want a pudding and just ordered a cup of tea when all the others were giving their pudding orders, but the waiter was quick thinking and saved the day by persuading me to have a little ice cream at least. It turned out they were only all ordering puddings, so I could have my birthday one!

A thoughtful pressie from Oli and Sarah

Flowers from Rose

We spent the rest of the afternoon in the garden and they insisted I open a few of my pressies as Sarah and Oli would both be at work on my actual birthday.

We also enjoyed some lovely cupcakes that Sarah and Oli had chosen for me, they were all very tempting and different flavours, so it was hard to pick which one to have!

First warm, sunny day of the year, at last enjoying the summerhouse and garden!

Yes I can see myself!

Palm House

On Tuesday I had a visit to the warfarin clinic, which was soon done and dusted and then as it was my birthday Rob had planned to take me to Kew Gardens, a place I've always wanted to go to, which is on my list of places to visit this year. It was a mild, but windy day and there was plenty of sunshine around. Kew Gardens did not disappoint and as Rob gave me a new camera for my birthday, it gave me a great opportunity to practice my photograghy skills.

Kew Gardens is a World Heritage Site and houses one of the world's largest and most diverse botanical collections and it's a beautiful place to visit in spring with some magnificent displays. I think we took enough photographs to make an album on it's own, which I'm going to do and I think we are already planning another visit as there is so much to see there and we didn't have time for everything. It will also be totally different in another season.

Here are a few of the photographs, which hopefully will show how stunning this place is.

Magnolia in the sky

 Inside the Temperate House

Overflowing with blossom

The world's largest surviving Victorian glass structure

Water lily pond

Is it snowing again?

I'm just an old greenhouse!

Princess of Wales Conservatory

Kew Palace

This week has been such an uplifting and enjoyable one and my birthday celebrations have seemed to carry on every day. I'm grateful I have been well enough to enjoy it to the full with my family and friends. I certainly got the warm sunshine and flowers I've been waiting for!


Kew Gardens: disabled parking and it's free; nice and flat for a wheelchair; you can borrow a wheelchair or scooter when you get there; concessions for disabled and their carers; most of it easily accessible; plenty of cafes and benches to take a rest; plenty of those all important loos and a couple of nice gift shops and that's on top of all the magnificent scenery!

www.kew.org/ 

Who said I can't go anywhere exotic anymore!

It's been 579 days of trying to live life to the full and trying to keep well while waiting, I've been lucky to get this far and value every day I stay well. Please sign up to be an organ donor, if you have not yet done so; the link is below.

A sweeping carpet of early bluebells