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. 

January Bits and Pieces!

This has been a busy week with all sorts of bits and pieces going on, wedding planning being one of the main activities amongst them!

Firstly, it was back to reality and a visit to the GP to finalise which drugs my surgery will prescribe and which they won't and to also update the doctor on my changes in medication. My surgery is only able to prescribe the 'cheap' drugs and not the more expensive ones. These will come from Papworth. It is all a bit of a rigmorole, as at the end of the day it will be the same Primary Care Trust that will pay for them anyway. 

It seems to be a big lottery over drugs and who will pay for them: I've met other transplant patients whose doctors are willing to prescribe all the drugs and then others like me, who have been refused the expensive ones. According to the newspapers it seems to be a similar situation when it comes to cancer drugs and there are even reports of drugs being refused because they are seen as too expensive, although they have been approved by Nice. At least I am going to get my drugs one way or another, so I can't complain, but it seems wrong to me that there isn't just one straight forward system for all. 

We celebrated an early 'Burn's night' on Tuesday evening with haggis, tatties and neeps - we always celebrate 'Burn's night' - Rob was born in England, but his late parents were Scottish, so we like to carry on traditions! It's a quick and tasty meal, proper winter comfort food! And all washed down with a wee dram of whisky if you fancy one! 

We were recently interviewed for an article that is going to be featured in Hertfordshire Life, the article is going to be about living in Knebworth, but they had seen our transplant story in the local news and wanted to include it too, together with our views on living in Knebworth. We are always happy to try and spread the word about organ donation, so on Wednesday a photographer visited to get some pictures to go with the article. We are beginning to get used to this!  The feature will be in the March issue, which will be on sale in February. 

We have been exploring a few wedding venues this week too, for Sarah and Oli's wedding, just shopping around really to see what there is available and when and getting an idea of costs. This is all very exciting for me, and even more special in the light of my transplant. They hope to get married in spring next year and now I've had my transplant, I'm looking forward to enjoying every minute of it -  planning, preparations and all! It's a good excuse to get out and about and have a few afternoon teas - as Oli said on Saturday, after seeing a venue that didn't quite meet our needs, 'Well at least we've had a good afternoon together and enjoyed a nice afternoon tea!' It's going to be a lot of fun: I'm going to make sure of that! 

Just when we had thought we had finished with media interviews for the time being, on Friday I was asked to do another interview with the British Heart Foundation for their magazine. I was more than pleased to help with this, as it was about living with Idiopathic Pulmonary Arterial Hypertension and the importance of Professor Morrell's work and research on genetics, which aims to help develop new treatments for Pulmonary Hypertension. Hopefully the article will help raise awareness of Pulmonary Hypertension. His team were awarded a two million grant last year for this important research, which we are all hoping will lead to some targeted new therapies for PH and even a cure. 

We are still catching up with friends we haven't seen since my transplant and spent a lovely day on Saturday when friends came from Lichfield, near Birmingham to visit us. It all felt a bit surreal at times, as last time we met up was just before my transplant and now I've recovered a lot from the operation it was a bit like I had just blinked and it had never really happened! At other times I noticed how much more energy I had and how I can concentrate on conversation for longer. We are slowly managing to meet up again with many of our friends since I had my transplant and seem to have a busy calendar over the next month or so. 

After a lovely weekend, just as things feel like they are getting back to some normality after my transplant and Christmas, it's time to start packing a case ready for my next hospital visit - transplant clinic and yet another brochoscopy are looming again. Hospital always brings it home to me, the seriousness of all that has happened and reminds me that there is always some uncertainty about the future. I always begin to get worried about what they might find and why they need to keep checking my lungs over and over again. On the other hand it is always a relief to be going back as there is always something niggling - this time my never-ending cough feels worse this last few days - so it will be reassuring to be checked. It's always a massive relief to get home again and be reassured that all is going well. So I'm bracing myself ready and hoping I'll be home again fairly quickly again. 

My late father once gave me a lovely silver cross and disc engraved with a prayer called, 'The Soldier's Doxology', which had belonged to my grandfather. My grandfather wore this during the Battle of the Somme and survived it. I always keep it with my transplant bag and bring it to the hospital every time I stay in or visit. It is my lucky charm, I reckon if it worked for my grandad, then it could work for me! So far, so good, it will be coming with me yet again! 

Today I'm also sending off my first writing assignment for the writing course I've just enrolled on. I've decided it's time for some new challenges and activities now I'm getting my life back again and writing is something I can do from home and can also manage even if I feel a bit under the weather so it is a perfect choice for me. It feels good to get started on a new challenge and I am mainly doing it just for my own pleasure, but who knows where it may lead ... we will see! 

So a busy week with lots of bits and pieces going on - life seems to be getting busier and busier now, which is good news, because busier and busier means getting better and better!