The Opt Out System and #Time to Sign

Organ donation has once again been featured quite heavily in the media this last week or so, which is a fantastic thing as all publicity helps spread awareness. 

Firstly NHSBT have launched this year's Christmas Campaign #TimeToSign. It was announced that a total of 49000 people in the UK have had to wait for a transplant in the last decade. People are still waiting - some have been waiting for years. For some the wait is too long and they become unfit for transplant and lives are being lost. If there were more organ donors, they may have had a second chance. 

I've been campaigning to raise awareness of organ donation for over four years now - I'd like to say I've made a difference - many of us would - but the situation remains depressingly the same -  three people still die each day while waiting for a transplant. It hasn't changed. What if you or someone you love was waiting for a transplant, with your life on hold? That is the question we are asking this Christmas. Think about it. #TimeToSign if you can say 'yes' to organ donation. Just click on the link below.

NHSBT Register

I was pleased to be interviewed by the Welwyn Hatfield Times for the Xmas campaign once again this year and I've added the link below. The last time they interviewed me was the first Christmas after my transplant - back in 2013. I've come a long way since then!

Welwyn Hatfield Times News Item

Secondly, this is the week that the 'Opt Out' system comes into force in Wales - this means that Welsh citizens will automatically be on the organ donor register if they have not recorded an organ donation decision already (either opt in or opt out). Those that do register their choice to be organ donors can choose to donate all or any specific organs and people can also choose to opt out and register that they do not wish to be organ donors. Those that decide to do nothing will be treated as having no objection to donating any of their organs.

It is hoped that this may increase the number of organ donors available by at least 25%. It is a subtle change to how things work in England but there is a lot of hope that it will make a difference as we seem to be at a standstill with the current system we have.

It is known that 90% of the general public are in favour of organ donation and would take an organ if they needed one, yet only around 30% are signed up and again no matter how much campaigning is done these figures don't change. It is very clear that some changes to our current system need to made and this appears to be a sensible way forward to try and increase the amount of people on the register.

It will be interesting to see how this may change current statistics where three people still die each day waiting for an organ because there's a shortage of organ donors and whether England, Scotland and Ireland will follow.

One of the most important things though - whatever system we have in place - is the discussion that is needed between family members to ensure that everyone knows what each other's views are on organ donation. At the moment organ donations are being restricted because families often override a loved one's decision to donate. This is often because they simply do not know what their loved one's views were on organ donation and organ donation hadn't ever been discussed. It is a harrowing decision to make for any family, but easier if families know what their loved ones wishes are.

Our culture in the UK of not discussing dying, death and illness is a thing that needs to change if the situation is to be improved. I think we have a strange culture sometimes when illness and death affect everyone, yet we all brush it under the carpet as though it doesn't happen. I'm not advocating that we all talk doom and gloom everyday, just that sometimes discussions on these matters need to be had - it should be natural to have some discussion on wills, dying wishes and amongst these organ donation. It is proven that family consent rates to organ donation are higher when the family has had the 'discussion'.

Yesterday I was on BBC Three Counties Radio, following the changes in Wales, discussing my transplant and the difference it has made and the hope that the new changes may bring to those who are waiting.

BBC Three Counties Radio - Organ donation is about 20 mins in

All in all, there's been much talk on organ donation in the media and with that hopefully more awareness and more discussion amongst families.

Have Yourself a Merry Little Christmas ...

The week has been a really good one. I've managed to get together and catch up with lots of friends and we also felt it was time to try and do our bit again to promote organ donation, having now had a good few weeks recovering and feeling better each week.

I'm beginning to feel like life is busying up, settling down and becoming much more normal again in many ways. As a family we are feeling full of hope that the New Year is going to be a good one - and that is one of the big differences transplant makes to your life, your hopes, dreams and expectations increase each week, instead of dwindling before your eyes as they did before transplant. My quality of life was diminishing and the odds felt like they were going against me, that is all different now.

Firstly, I had an hour or so out with the girls on Friday night, it was so lovely to see everyone and a little surprise for some, my friend Lesley had hatched a little plan for me to turn up and surprise all the others! It was great to be out and about again with friends. 

Then I met up with more friends on Tuesday, Kath and Michelle and my two favourite little girls Emily and Sophie, who I had been so looking forward to seeing after my transplant. Unfortunately, they had all been laid up with various infections, so they had to stay away for a whiile, because of the high risks I have to infection after my transplant. So it was really great to catch up at long last and see them all and enjoy the children - and lots of cake and tea! I got a beautiful rose bush for the garden to celebrate my transpant, very aptly called Joie de Vivre and a lovely little cake stand for my cup cake and we all exchanged some Christmas pressies. 

Then Wednesday it was time for another clinic visit to Papworth. This was a really good visit, after worrying that I might need more surgery, they had decided that they are going to carry on monitoring the situation and give me another bronchoscopy and a CT scan in three weeks time so they can keep a close eye on things. They are thinking there may be no need for a biopsy on my windpipe or surgery now, so we are hopeful and keeping fingers crossed I'm not going to need it. I will have my lung biopsy to check for rejection again in three weeks time too, so will be staying in hospital for a day or two. Everything else was looking fine and it was great to come home reassured again and be given three whole weeks off hospital to enjoy the Christmas festivities. 

At Papworth, I also got to meet up with a few patients who had had their transplants the same week as I had mine and it was great to see that they are all doing really well too. We also met up with Bernice, who after a long wait and being extremely poorly and hospitalised on and off for months, got her new lungs only two weeks ago. Only two weeks post transplant and she met us in the canteen for a cuppa and looked fantastic and best of all she wasn't on her oxygen! It was so good to see her and meet her lovely mum and grandad too. 

So a really good and very positive visit to Papworth on all fronts. 

The day got better, on my return home, I had a lovely visit from Rose's best friend, Lisa, she has been our daughter number three since she was about two and it was so good to hear all her university stories and exciting plans for next year. 

Rose eventually came home at the weekend, we had to delay bringing her back from Bournemouth for quite a few days because she had a sickness bug and of course it would be dangerous if I had caught it. So we had to make sure that it was quite a good few days that she had been clear of any symptoms before we could bring her home. It was hard knowing she was a long way away from home and poorly, but her housemates rallied round and looked after her until we could get her home. Rob had also come down with a bad cold the other week too and we had to take extra precautions until he was clear, so I could try to avoid it. I realised though that I was quite accepting of all this and not getting too frantic and was quite relaxed about it. If it had happened in the earlier days I know I would have completely freaked out, so I feel I've moved on a little bit from those first few weeks and I realise I'm beginning to get much more confident living with my new heart and lungs.

It's super to have Rose back and coming and going with her pals. Best news ever is that she has got a placement near home for her third year, which she had an interview for this week, so we will have her back in summer for a whole year or so. David has also got his placement for next year working in London, so will be living at home too, so we are expecting a livelier household again next year. That will be so good! I feel we are all making plans and moving on with our lives again after all the upheaval.

Thursday we had a visit from both our local radio station, Jack FM and the Welwyn Hatfield Times, our local paper, so we could help promote organ donation. It worked well, as organ donation was back in the main news, both in newspapers and on the TV, with Will Pope's and Bernice's story being revisited by ITV and national papers. I want to thank ITV so much for keeping organ donation in the news and helping us to promote the cause. I have a few close friends still waiting that awful long wait for transplant, because there is such a shortage of organ donors. I know how difficult, stressful and frightening it is to go through and live each day both waiting and hoping. 

Our Jack FM interview:

www.106jack.com/news/local-news/knebworth-transplant-patient-improving-day-by-day-after-two-year-wait-for-organs

Watch out for our newspaper article in my next blog.

We need to keep promoting that there is still a great need for more organ donors. Still only a third of people who would accept an organ if they needed one have actually signed up to the organ donor register. Only 4% of people give blood too, the rest of the population relying heavily on their generosity. When I had my transplant, I was given blood and I also needed to have blood platelets before they were able to remove the balloon pump that had been supporting my new heart. Again, I have been helped on this journey by complete strangers.

We finished Thursday off with an outing to Prezzo's for dinner with the family. Again, another lovely ordinary outing after a busy day and it felt good. Some days I'm beginning to notice that I've got much more energy than I used to have, another step in the right direction.

Friday morning and I rounded my week off with my first visit to the hairdressers since my transplant, an ordinary thing for most I know, but yet another big step for me, albeit I could only manage a dry cut, but I got there at last and feel a lot better for a good haircut! More normality! 

So apart from the Papworth bit and the newspapers, things felt much more normal and settled and already and so soon, getting so much closer to how life should be. When I first knew I was having my transplant, I had thought to myself I would be happy if I just got home for Christmas, but here I am having been home now for nearly eight weeks and life is getting so much nearer back to normal again. Now I've had another good clinic visit and been given three weeks away from hospital we are settling down to enjoy a wonderful Christmas. 

Yes, I am, pinching myself yet again...and dreaming about just what the New Year is going to bring, my life has been changed forever, starting with a phone call and then followed by a miracle, in just one day. What is that song? 'What a Difference a Day Makes - 24hrs!' All this, thanks to my donor and the selflessness of their family, they are always in my thoughts, the wonderful changes in my life wouldn't have happened if it weren't for them. 

If you can do one good thing this Christmas and you haven't already, please sign up to the organ donor register, the difference that can be made to someone's life is a miracle, the link is given below. 

As this is my last blog before Christmas, I would just like to say once again a massive thank you for all the support and kindness you have given me during this last few months, it has really helped me get this far. I wish you a happy, wonderful and peaceful Christmas and hope that you all have a healthy and happy New Year. For all those facing that long and difficult road waiting for transplant, I truly hope that 2014 is the year for you and it brings you your very special gift. 

All Things Medical

We had a hectic weekend taking Rose and her friend Emma and one very loaded up car back to Bournemouth after their reading week at home. It was great to have Rose back and spend lots of time with her.

Lymington Marina

Always eager to explore a new place or two, on the way back we decided to travel through the New Forest. It was perishing cold all weekend, but we drove along the coast and managed to visit Lymington, which is a picturesque and busy sailing town and ferry port. It has a pretty cobbled street, which leads to the marina and a busy high street with Victorian and Georgian buildings some interesting shops, market and cafes. The good thing about visiting at this time of year is that parking is easy and everything is quieter, so everything feels much more manageable than it is when you have to push your way through crowds and hoards of holiday makers.

Coastal drive

Lyndhurst

We then drove through the New Forest, a scenic drive where there is lots of heathland, woodland and wild ponies and visited Lyndhurst, which is known as the capital of the New Forest being a travelling route between the South Coast and Southampton. This is also an historical market town with a narrow high street, Victorian and Edwardian architecture and plenty of shops and cafes. It also has an interesting museum and a church dating from 1860, which are both worth a look.  

Lymington

Exploring new places always helps to keep us busy and take our minds of transplant and the endless waiting. I bought a guide to the New Forest and East Dorset as we will be coming and going to and from this area quite a lot over the next year or two while Rose is at university and I intend to do a lot of exploring and sightseeing!

www.thenewforest.co.uk/

Walled garden, Chewton Glen  

After that busy weekend, it was back to all things medical - there is never much escape, it's like managing a full time job-  it all started with a visit to the warfarin clinic on Tuesday. This time I had hoped to be stable like I have been for the last few weeks and was hoping to get a months reprieve from the clinic, but no such luck, my INR blood test was a little on the high side this week, so I have to go back in two weeks time.

On Wednesday Papworth phoned and gave me a date in March for going back in hospital, I seem to be on the phone to them every few days at the moment with one thing or another and between the the two teams.

I also had to spend a bit of time chasing up the Lister Hospital about the scan I need for my ear, so far they have ignored and failed to respond to the two letters Papworth Hospital have sent them and my first phone call chasing them up. In the end I found out they were simply just ignoring them until I had had my next appointment with the consultant. Now I had specifically been told to cancel this, as I couldn't get my scan in time for it and had rearranged it for April so they could manage to sort the scan out before I went back. So you can imagine my frustration. They have now agreed to do a CT scan instead, which I'm very relieved and pleased about and they have promised it will be done before I am admitted back into Papworth in March. So fingers crossed that that will be sorted out very soon.

Wednesday was also the day I decided that once and for all I need to try and sort out the mess that eczema is causing all over my arms, legs, hands, ears and back, there is not much of me left that is normal nowadays! After talking at length with my PH consultant last week, it was decided that the Epoprostenol is not the cause, but the flushing it causes is really exacerbating it and the diuretics I need are adding to the problem of drying my skin. My many allergies to one thing or another are probably what triggered it, but the drugs I have to have are preventing me getting rid of it so easily and now it is becoming unbearably itchy and sore. So I've another appointment at the doctors to make and in the meantime I'm going to have to spend time religiously creaming my arms, legs and back every day at least three times a day, to try and help things and keep it at bay, just adding to the long list of medical requirements and routines of each day. I don't think I will be able to do much about this problem, as I cannot come off any of these drugs until I get my transplant, so I hope I can just keep it at bay.  

The spare yellow sharp bins make good storage boxes!

Typical months delivery

Thursday saw what we now call 'the drug run' in our house, when I have a months supply of drugs and equipment delivered to make up and maintain my intravenous drug Epoprostrenol. Obviously someone needs to be in the house when it is delivered and there are always quite a few box loads of the stuff and we have had to find storage space for it all. It always takes a while to make a list up of what I actually need for the month, which I have to tell BUPA the week before, in fact my very organised husband does a spreadsheet there is so much stuff! I always get a phone call from a dedicated person at BUPA to ask what I will need for the coming month a week before delivery. Then it arrives in box loads and all needs unpacking, checking carefully that all is correct and then sorting and storing.   

Each month I also have several different tablets to help my condition too, I usually have to take 12 tablets or so a day so I'm positively rattling around, as well as having an intravenous drug whirring round all my blood vessels. The medication includes blood thinners, various diuretics, anti sickness and diarrhoea drugs and these I get on repeat prescription from the doctor and local pharmacist and I have a yearly prescription card, which means I just have to pay £100 a year or so for them, rather than the £50 plus it would cost each month if I paid for them monthly. Friday was time to collect my monthly prescription drugs, where I am almost on first name terms with the pharmacist and staff in the shop. They will get a shock in there one day when I walk in with a new prescription for a whole new set of drugs when I get my transplant.

I suppose you could call me a firm, well seasoned and hardened drug addict now!

We were recently in the local Stevenage Comet newspaper and I couldn't get an online link to our piece so here's a piccy.

We also managed to be in the Welwyn Hatfield Times again this week, as they did a follow up article about the record number of people who had signed up to become organ donors since the ITV 'From the Heart' week. It was great to just keep the story going and hopefully may prompt a few more people to sign up to be organ donors.

http://www.whtimes.co.uk/news/knebworth_mum_s_delight_as_nearly_150_000_join_transplant_register_1_1953440

We also got a lovely card from NHSBT, thanking us for playing a part in their campaign that week, which was a really nice touch.

It is now 528 days that I have been waiting for my transplant, the last 28 days have been hectic, but during that last month of February 84 people will have died while waiting for their transplant and while I have been waiting 1584 will have lost their lives. So if you haven't already, please use the link below and sign up.

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

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220 

     

Snowdrop Time

All has been a little quieter this weekend after  last week's busy events. We were pleased with Emma's report in the Welwyn Hatfield Times, which you can read from the link I have put below. Emma gave a true account of all we said to her when she came round to interview us and we hope it may spur a few more people to sign up to the donor register.

http://www.whtimes.co.uk/news/knebworth_heart_and_lung_patient_battles_to_raise_transplant_awareness_1_1936256

Rose is home from university for her reading week and we have done some relaxing things including going to the local theatre to see Romeo and Juliet and going to the cinema to see Life of Pi, which we thoroughly enjoyed. It is so nice to have her back and have her around, especially while Rob is at work. 

Every year year we also like to visit Benington Lordship, which is in Benington, a small and very picturesque village near Stevenage in Hertfordshire and near where we live. Benington Lordship was once a fortified site dating back to Saxon times and the remains of a Norman Motte and Bailey fort can be seen there. There is also a red brick manor house dating back to the 18th century and it is all set in pretty gardens with stunning views across the Hertfordshire landscape.  The owners open the gardens at certain times of year under the National Garden Scheme and every February they open up the grounds and gardens to the public as they have the most fabulous display of snowdrops. As the sun has been very welcomely shining this week and it's felt so springlike and uplifting we decided to visit and I think the snowdrops were also enjoying the warm sunshine as they were out in full bloom and most probably at their best. It was hard to imagine that the previous weekend they were covered in a blanket of snow.  

I always have a lovely image of Benington now at snowdrop time as we have visited the last two Februarys, but I also have mixed memories of this little Hertfordshire village too. Before I used to teach, I once accompanied Sarah's class on a geography trip here as a parent helper, she was in Year Two and only seven years of age. I was walking up a slight incline with the group I was looking after, when I became dizzy and fainted into the main road. I can remember coming round and I had hurt my leg and arm, some of the adults were fussing around me and I could hear Sarah crying. The teacher quickly whisked the children away to the venue we were heading towards and a couple of adults tended to me. One of them rang an ambulance, her husband happened to be an ambulance driver and a man came out of a house to help us and gave me a cushion to put my head on. In the end we cancelled the ambulance as I felt alright again, except for a grazed arm and bruised leg and I managed to carry on round on the trip, but we put a few groups together just to be safe. 

This was the faint that spurred me to go back to the doctor's again, after an initial visit a few years ago when I had fainted previously.  Following that I went to see a cardiologist at the local hospital and they ran extensive tests and also referred me to Harefield, where I had more tests and even had an 'event recorder' implanted on my heart to try and capture a faint. Two years later I had the recorder removed with just one faint recorded on it, they just could not pinpoint anything that looked untoward or anything looking wrong with my heart, so both the doctor's and myself were happy that my odd little faints now and again weren't really anything significant and there wasn't really anything more that could be done or investigated.

So I didn't worry too much when I had a faint now again, it usually happened when I had been sitting down a long time and then got up too quickly and ran upstairs or something, so to be preventative I just stopped jumping up too quickly from being sat down or running upstairs too fast. It would be a whole ten years later when things got decidedly worse that I went back to the doctor. Many Pulmonary Hypertension patients are unable to get an early diagnosis, it usually an average of at least two to four years to get diagnosed and by the time a diagnosis is made, the  disease has more often than not, wreaked its damage. 

I also have some lovely memories of Benington and the surrounding area. During the early years of what I now know was my Pulmonary Hypertension, after helping in school, I trained as a primary teacher and brought several classes on school trips to the nearby Astonbury Manor and Nature Reserve. I also undertook some projects on working outdoors with the children at one of my schools and attended a course run by a  nature conservationist in Benington and we got to explore around the Benington Lordship Gardens, while it was closed to the public and got them all to ourselves. The gentleman then came to help us in school with many projects we were undertaking to improve our school grounds for the children and we we ended up creating a nature trail, hedgerows, a meadow, an arboretum and restoring our woodland for the children to enjoy. So it was a very happy and worthwhile time in my life that started in Benington and its gardens too!

It's strange how one little place that I've only visited a few times can evoke such mixed and powerful memories. Now enjoying some early spring sunshine and snowdrops while I wait for my transplant  will be added to that list of significant memories.  

Here is the link for Benington Lordship Gardens: www.beningtonlordship.co.uk/   

Just a reminder if you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220 

         

Ready, Willing and Prepared!

The evening that followed the filming by ITN for 'From the Heart', Rob was just 'tweeting' around and was soon being followed by 106 Jack FM Hertfordshire, the local radio station for Hertfordshire. They then messaged him and asked if we would like to do an interview to raise awareness about organ donation, so an interview was arranged on the following morning ready to be broadcast on their Friday morning news programmes. Excellent timing just before the big ITV launch 'From the Heart'.  So excitement again on Thursday as Chris from Jack FM came round to record a radio interview.

Jack FM featured my interview on their hourly news bulletins from 6 in the morning until mid afternoon, so there was lots of air time given to it and hopefully it may have encouraged their listeners to sign up to the organ donor register. They have also put the news article on their website and the radio interview so hopefully many more people may have seen it on there too and signed up. So a big thank you to Chris and all at 106 Jack FM Hertfordshire for their help in spreading the word about the chronic shortage of organ donors and helping in my appeal to get people to sign up.

The link to 106 Jack FM Hertfordshire's broadcast, if you didn't hear it, is :

http://www.106jack.com/news/local-news/transplant/

The previous week I had also been contacted by Emma, a reporter from the Welwyn Hatfield Times, which is the local paper for my area, she had been following my blog and offered do a piece to help us spread awareness. We had already arranged this before I knew we would be part of the 'From the Heart' campaign by ITV, so again it turned out to be very well timed, as the article was planned for publication on Wednesday 13th February, the biggest day in the 'From the Heart' Campaign. So again, we really hope that the article will help bring organ donation to the forefront of people's minds and get people thinking about and discussing organ donation, especially when they are seeing a lot on TV about it.      

When we had been filmed by ITN, Lawrence had told us that our piece would probably be aired alongside another patient who was waiting for a heart and double lung transplant too. This would be a young Cystic Fibrosis patient, he explained, who he had interviewed that morning and he had been impressed with how bubbly, enthusiastic and full of life she was considering how poorly she was and that she was facing transplant.  When Emma came to interview us, she had a lot of empathy for our cause as she explained her cousin who had Cystic Fibrosis was currently in Papworth and waiting for a heart and lung transplant. Well you may guess the coincidence - yes it was the same lovely patient that Lawrence had interviewed, who would be featured with us when our ITV interview was to be broadcast! How is that for a small world? Rob and I have now been chatting with her and wish her well for her transplant and hope it comes soon.  

Hopefully, at some point I may be able to give you the link to this news article soon. On Friday morning Rob was also contacted by the Comet, a newspaper for North Hertfordshire and this week an article was published about us in that too. Again, I hope I can give you a link to this soon as well.

Ffffffreeeeezinggg!!!

We had planned to go up to Cumbria and Lancashire for a little break and to catch up with my family and friends and it was the third attempt we had made since I was ill in December. We postponed our Christmas visit because I had only just come out of hospital and didn't feel well enough to go and our proposed January visit was scuppered by snow. So we managed to get to Cumbria at last on Saturday, had lunch in our favourite pub, The Strickland Arms at Sizergh (www.ainscoughs.co.uk/Strickland-Arms/strickland-arms-home.html), spent Sunday catching up with family at my mum's in Lancashire and Monday catching up with friends. We had a lovely lunch out at another favourite pub in Arnside, The Albion (www.albionatarnside.co.uk/) which has fantastic views across to Grange-Over-Sands and the Lake District mountains beyond and then we drove over the Lyth Valley - a beautiful scenic drive- down into  Bowness on Windermere. It looked stunning in Bowness with the snow capped mountains, winter sunshine and the boats on Lake Windermere.

Cheeky swan!

In Bowness, there are many little shops to browse around, trouble is for me it's a little bit steep and hilly, but I've done it before and I just slowly took my time, walking very slowly and stopping when I needed to get my breath while pretending to look in a shop window. Every shop window was dressed for Valentine's Day and there were heart displays on show everywhere. It felt very poignant, the hearts had a different meaning to me and I was overwhelmingly reminded about my need for a new heart and the ITV From the Heart Campaign as I looked into every shop window.

Trust him to muscle in on the act!

On Tuesday we came home and our bit for ITV was aired on the main 6.30pm and 10 O'clock news programmes. There is something very surreal about seeing yourself on the TV. On the bit where they say 'coming up next', my picture flashed up and then a picture of the Pope followed, which felt very bizarre. True to form, that gave Rob and the girls a giggle, 'mum with the pope', what next? And then we were on the news and hopefully have helped play a little part in raising awareness of the need for people to sign up to the organ donor register.

http://www.itv.com/news/2013-02-12/from-the-heart-life-on-the-transplant-waiting-list-kathryn-graham/

As soon as we had been on air the first time, we were inundated with messages from friends and acquaintances saying they had signed up to be organ donors. My sister's son's school is going to run some special assemblies and put it in their newsletter and a colleague of Rob's has just donated £500 to the PHA Association UK. So a pretty fabulous, unexpected, overwhelming and humbling response from our families and friends!  

The following day I just happened to have the local Anglia news on TV, which was just pure luck, as we receive Anglia News in one of our rooms and in another get London local news. I had a bit of a shock as our news interview appeared again within a feature about both Addenbrookes and Papworth Transplant Centres. The link for that feature, which is an excellent feature calling for more organ donors, is below, just click on the big red 'From the Heart' logo.

http://www.itv.com/news/anglia/update/2013-02-13/itvs-from-the-heart-campaign/

Wednesday should have been more of a normal day - well except for Stacie, my friend, being on Daybreak that is, plus the special 'Tonight' programme and celebrity programme 'From the Heart' - so it became even more exciting when we found out we were on the news again too!

Link to Stacie & Megan on Daybreak:

http://www.itv.com/news/update/2013-02-13/i-stare-at-the-phone-waiting-for-that-call-about-a-donor/

Thursday, we tried to come back to earth a bit, with a visit to Papworth, for my bone density scans, these are in preparation for my expected transplant, to make sure my bones are strong enough before I will need to start taking steroids for the rest of my life post transplant. Steroids can cause osteoporosis and weakening of the bones when taken for a long time. All was done and dusted quickly in the clinic and before we drove up to Papworth, they had contacted us to say pop in and see the news crew while we were there. So after my scan we went to the Transplant Continuing Care Unit and as we walked in I thought gosh it looks busy, then realised that a big group of the people in there were the film crew, dressed in scrubs as they had been filming in the theatre. We got to meet the whole team and had a good chat about the last few weeks events. It all felt a little surreal sitting with a TV crew dressed in scrubs in my transplant clinic! It was good to get a chance to meet all of them and thank them for what they have done for us and everyone else in need of a life saving organ this week.

Today as I'm about to publish this, it is Friday, the past seven days have been hectic and so it is a resting day for me and the rest of the weekend, to catch myself up from all the excitement. I am so looking forward to weekend as Rose is coming home from university for a week and should be home tonight.    

I really want to thank ITV from the bottom of my heart for the coverage they have given to organ donation this week, it was reported earlier in the week that over 30,000 more people have signed up, so hopefully by the time I publish this blog that figure will have gone up even more significantly.  I am excited to find out just how big an impact this week's campaign has had and really hope it's helped. For me, not only has it been a big boost to raise awareness of organ donation, but somehow this week I don't feel quite so much on my own, somehow I don't feel quite so isolated being in this situation. Suddenly it seems the world has woken up to the plight we have found ourselves in, suddenly people are beginning to understand, suddenly I'm not just one of a few lone voices anymore. So thank you ITV.

My wait for my transplant is usually always there lurking in the background of my mind, but this week has been strange, first with all the talking in public about it and then the issues surrounding organ donation being constantly highlighted on TV. Transplant is at the forefront of and prominent in my mind this week. I think my awareness of my own situation has been heightened and if ever there is a time I was ready for this impending transplant, it is now. So I will keep hoping it will be soon.

Winter sunset, Lake Windermere 

 Just a reminder if you want to sign up click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220