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.

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 

     

Between a Rock and a Hard Place

'Waiting has never been our choice in the past, nor is it in the present. We are always striving, anticipating the future and preparing for it'  

Flowers amidst the bleakness

I realise that as we go on each day, week and month and years even now, my illness has become 'normal' for me, what was once my normal world of busy wife, mum and teacher has been completely lost now and has somehow slowly slipped away and the reality of being ill and all that goes with it has become normality. Waiting in for drugs, collecting drugs from the pharmacy, visiting the GP, hospital stays, visiting the warfarin clinic, visiting the PH clinic, visiting the transplant clinic, blood tests, walk tests, lung function tests, CT scans, X-rays, echo- cardiograms and ECGs and managing the actual physical symptoms of being ill, which are many, plus all the various medication and intravenous drugs are all the norm for me now, where once upon a time even a visit to the GP would have been unheard of. In fact when we moved to our house seven years ago, I didn't even move GP surgeries for about the first three years! Now it's all normal to me and in the course of our everyday lives, sometimes it feels like I've carved out a career in being ill, which is not how I want to be or be defined, but it is difficult to stop it completely taking over and getting buried underneath the towering heap of it all. It takes a tremendous lot of effort and hard work sometimes to breathe normal life back in amongst it all, but we all keep trying our best and keep striving towards the future and trying to be prepared for my transplant when it comes.

This week has been a difficult one, on Wednesday I went back to Papworth for my three monthly visit to the Pulmonary Hypertension team, this time a full MOT on the day ward. I've done this before and knew what to expect; a deluge of more tests to go through: blood tests, walk test, lung function tests, x- ray, echo-cardiogram, ECG, MRSA tests, Hickman Line and pump checks, plus a thorough checking out by a doctor or consultant. So we prepared ourselves for a very long day.

I don't mind most of the tests now, as I've said, they are all a normal occurrence to me now, but for some reason I absolutely hate and detest the Lung Function Tests. I don't know why really, as they are not painful or anything, but there is just something so humiliating about sitting with a peg on your nose and some technician ordering you to blow this way and that way into a tube, then making you keep repeating it over and over again until they think you have done your best.

'We have to make history and approach the future with steady steps, not wait for the future to come to us'

A whole year ahead of us!

Following all the tests I had a thorough checking over by the consultant. It was at this point, when all seemed to be going well, but then after some discussion about the tests and about my quality of life that she broached the idea of having my intravenous drug increased. She thought my quality of life could be improved by having a higher dose of my intravenous drug and also that by doing this it would be preventative measure against further deterioration while I wait for my future transplant. I also had some signs of deterioration before Christmas and it is two years since it was last increased.  She thinks I need to be able to enjoy a better of quality of life now, not keep putting up with so many restrictions while I wait for the transplant that always just seems to loom in the future and be just outside of my grasp.

Now having the Epopostrenol increased may not usually be too big of a deal for most patients. It involves being admitted into hospital for a few days, the nursing staff will then either increase the flow rate of the pump gradually over a few days or slowly increase the amount of drug in the syringe on the pump, whilst you are wired up to and monitored on a heart tracing machine. All should be sorted within a few days and then you are allowed home if all is well. Some people get some mild side effects: headache, nausea, jaw pain and flushing are the usual ones, but then that normally will subside and you go home and feel much better.

For me it is a different story, unfortunately I have had a worse reaction to Epopostrenol than most patients usually do.  The first encounter, actually, being put on the drug resulted in three weeks of being sick, diarrhoea, searing headache and jaw pain and flushed skin. The sickness and stomach upsets resulted in me being placed on drips because of dehydration and I was unable to eat or drink anything, not even a mouthful of water and became bedridden for days. It then subsided and I had minimum side effects by the time I was allowed home.

Then came the time for the first increase, for this I reasoned well maybe I'm used to the drug it may be easier this time, but this wasn't to be. I came into hospital just supposedly for the weekend and two weeks later after a repeat performance of last time I was allowed home. This time I was still being sick and felt very ill and it took a few months to feel properly back on my feet again, but I have never really been the same again and I still have some side effects two years on and have to have medication for the sickness and stomach upsets and suffer badly from headache and flushed skin. On the other hand the drug saved my life and has improved my Pulmonary Hypertension. Love this drug; hate this drug.

'True joy is that which comes from progress and success.'

Now the consultant is aware of all this, but thinks there may be a chance my body may cope better this time, as I am now well established on the drug, but she cannot promise anything and she did give me a wry smile when she mentioned coming in hospital just for the weekend, indicating well yes it may be weeks!  

Spring has sprung!

So for me it is quite a big deal to put myself through this again, but my biggest worry is what state I will be left in afterwards. It will almost definitely keep my Pulmonary Hypertension at bay and maybe improve my exercise capacity, but it may come at a price of worsening side effects that drag my quality of life back down. We also discussed the transplant with her, and again found ourselves considering similar odds for surviving PH and surviving transplant. As Rob says, for both situations, 'we are stuck between a rock and a hard place'. Impossible decisions. Decisions we wish we hadn't got to make. Sleepless nights. Tears.

Well the transplant decision is made, sometimes I wish I'd just had my transplant right away and then all this would be taken off me, but then again I would be facing new problems, but at least the deed would have been done; however, the transplant decision is made, questioned sometimes and that's healthy I suppose, but the same answer is always forthcoming, transplant is my way forward and the only way I can see to make some proper progress in my future.

I have also made the other decision, a no brainer really in the cold light of day, Pulmonary Hypertension is life threatening, sickness and upset stomachs are not, so with some trepidation, well a lot of trepidation, I am going back in hospital for the increase and I will just have to get on with it afterwards whatever happens. I have asked if I may wait until after Sarah's twenty first, as I don't want to ruin things for the surprise plans we have made. So it looks like the middle of March will be the time.

Sometimes it's along and winding path before you get there! 

So I've got a few weeks respite to pick myself up, brush myself down and go for it. As a friend of ours once said when facing secondary cancer, 'time to get my walking boots out and get ready to climb the next mountain'. And she did, and I will! The consultant told me to stay positive, well for me being realistic is my positive in this matter. Expect what I have experienced before, after all that is all that I have got to measure things from and who knows I may be pleasantly surprised after all. Believing that all will go swimmingly is asking for a fall at the first hurdle if it it doesn't, but I do believe that we will all manage this as a family whatever happens, just as we have always done.

Decisions where the outcome is life changing or even life ending seem to be happening too often for us and Rob is wishing for the time when decisions we have to make are just simple ones again. Decision, decisions and more decisions about illness and life are a thing many sick people have to face and I know I am not on my own this week. One PH friend is facing a decision about life threatening treatment and another is facing the impossible decision about transplant. It would be so good to see into the future sometimes and not have to weigh things up on sterile medical data, which we often end up doing. So here's hoping anyone facing a tough decision this week, can come to a conclusion they feel brave enough to cope with, even if they are unsure in any way.

'People naturally like comfort and relaxation, but it is more satisfying to work hard and enjoy your achievements'

The most amazing news this week and news that gives me some strength and hope amongst all of this is that 147,000 people have signed up to be organ donors. How fantastic is that? Somewhere lives are going to be saved and again, I can't thank ITV enough for raising awareness of organ donation and the plight people like myself find themselves in. The bravery of the donors and the generosity of their families during such a testing and tragic time has also been discussed and the difficult times families have had to face losing a loved one while waiting for a transplant. People are discussing organ donation and that is a wonderful thing. It has been uplifting to play a little part in all of that and I'm sure there will be lots more opportunities along the way to continue the campaign. It was a busy week or so, nerve wracking and fun both at the same time and it's good to see such high rewards after such a big concerted effort by a lot of people.

Rob says that since I said, 'I would like to do something about raising awareness of organ donation and Pulmonary Hypertension, but I'm not sure what', back in autumn, we have managed to do quite well really, talking in the House of Commons, being on the local radio, being in the local papers and being on the regional and national news. We are really thankful for the opportunities that came our way to do this and I'm hoping it will not end there and we will seek out more opportunities to keep up the campaign in the future.

I have put the link to the ITV website below, which is full of transplant stories, so you can see it if you happened to miss anything (you probably needed to be out of the country for that), but really I just like scanning the page because both me and Stacie are on it, doing our little bits and it's a lovely souvenir of the week for us both!

 http://www.itv.com/fromtheheart/

The little proverbs are Arabic proverbs, three years ago during February half term, we were lucky enough to visit Dubai and every day a little proverb card was placed in our bedroom. I just came across the cards recently as I had saved them and thought them apt!   

     

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 

     

Birds, Spring and Doing Different Things

It is exactly one year since I logged into Blogger and learned how to set up a blog up and started writing my blog. I had kept a diary of all that happened to me in that first eighteen months of being diagnosed with PH and going on the Transplant List and wasn't quite sure what I would do with it, if anything, but I had by this time a notebook of hurriedly scrawled pencilled notes bursting at the seams just begging me to do something with it.  I ended up transferring it all into this blog and I am now on my 66th post!

delicious pud at Hambleton Hall

It's that time of year as we come into February that if you look really carefully you might just get a hint that Spring is around the corner, even though we are expecting some more snow this week! When I woke up this morning I could hear some birdsong and an odd tweet or two of the feathered kind and I've got bulbs pushing through in the garden, even bluebell shoots! The days seem just a little bit longer and there are daffodils and tulips in the shops, all just giving a promise of a brighter and warmer time to look forward to and some anticipation of warm sunshine - well I can live in hope of that too! I bought some daffodils for the house this weekend - yellow always looks so fresh and bright in February to cheer up the dreariness of winter- automatically it makes you feel uplifted.

Rob and I had a lovely few days away earlier last week, which was very relaxing and a real tonic to get out and about in another environment. We went to Rutland, which is only an hours drive away from us and is a small county sandwiched in between Leicestershire, Lincolnshire and Northamptonshire. It is only tiny, being only 17 miles east to west at its broadest and 18 miles north to south at its longest, but it is relatively unspoiled and you could even describe it as the Cotswolds in miniature or a bite size piece of the Lake District.

We had planned to stay here in November to enjoy a few Autumn walks - well walks of a fashion with me in tow - and to do a bit of Xmas shopping in Oakham, but had to cancel at the last minute because I lost my dad. We managed to re-arrange it for last week and hoped it would give us a lift after all the snow and dreariness of January. A large part of Rutland is covered by Rutland Water, an Anglian Water's drinking water reservoir with several large nature reserves and a visitor centre. It has a 25 mile circular track for walking and cycling and one day I have promised myself a proper long walk or better still a bike ride, which is impossible for me at the moment.

Rob and I visited the bird reserve on the Hambleton peninsular run by the Leicestershire and Rutland Wildlife Trust. We were wrapped up warm with scarves, wellies and the lot. It is a paradise for bird watching and after speaking to the warden we reckoned I could manage the walk to the nearest bird hide, which was about 350m away, just around what I manage to do around when I do my six minute walk tests! This time I would be able to amble more slowly to keep my breath. It was a mild January day and there was seating in the bird hide, so I could rest while we watched the birds before I had to attempt the return walk. I always have to check how far I have walked so I can weigh up whether I'm capable of and have the stamina for the walk back!

Warming stew at the Lord Nelson 

At first we couldn't see many birds then we started to see several cormorants ducking and darting around the water, there plenty of ducks and gulls and some flocks of geese and we were rewarded for our patience with a big flock of lapwings flying above the water then landing near to where we sat watching. While we wandered back we saw thrushes, goldfinches, tree sparrows, wrens, pheasants, robins and blue tits and great tits. So nature rewarded us for our efforts and it gave my spirits a great lift to be outdoors and enjoying the quiet of the reserve.

After that we needed to warm up again and we went off to Oakham, an interesting market town with a small castle, a museum, some bespoke shops and its own market place with stocks. We found a lovely pub and enjoyed a warming lamb stew with crusty bread. It was a quirky place to eat if you love old buildings, beams, fires and antiques. All in all the whole trip was well worth the wait, a real pick me up and really helped me to get thinking of springtime and that it wouldn't be long before we get warmer, milder and longer days. A lot to look forward to while I wait.

For information on Rutland: things to do, Accommodation, where to eat: www.discover-rutland.co.uk/  

And a couple of tried and tested places: www.hambletonhall.com/; www.finchsarms.co.uk/; www.thelordnelsonoakham.com; www.barnsdalegardens.co.uk; www.rutlandwater.org.uk/

View from Hambleton

On and off during our trip and during the rest of the week I thoroughly enjoyed reading 'Life of Pi'. Most of you will know that this is now a major film and Rob has been badgering me to go and watch it at the cinema, but I refused to go until I had read the book. Rob recommended me to read it a few years ago, so I thought I better read it so we can go to the film while it's still on at the cinema. Anyway I was transported from Rutland Water to the Pacific Ocean with a young shipwrecked boy and a tiger! It was well worth the read and I can't wait to see the film soon. After our busy start to the week in Rutland I paid the price for overdoing it later in the week. This is a usual thing to happen with PH, try to act like you are a normal person for a day or two and then you will be exhausted and hardly able to walk for the next day or two if you don't try and rest up. You constantly have to try and juggle how much you can cope with and how much you can manage. It is at those times when I know and can acknowledge deep down that I cannot go on like this for evermore and I do definitely need to get my transplant.

Oakham

I am publishing my blog a little early this week as Wednesday is possibly going to be an exciting day in our household and I might have more things to write about and tell you all by the end of the week. I will give you a clue and lots of you will probably get it - Valentine's week and From the Heart - so keep watching and if all goes to plan I might possibly have some interesting news and pictures of something going on in my home that I have just agreed to do, but we will have to see if it does really happen first!

We have just had another lovely weekend with friends to stay and enjoyed catching up on all our news and I was pleased and moved to hear that they had both signed up to be organ donors and they are spreading the word amongst their own family and friends. So if you haven't already:

sign up to the Organ Donor Register: www.nhsbt.nhs.uk/

sign the epetition for the 'opt-out' organ donor scheme: http://epetitions.direct.gov.uk/petitions/38220

Finally, don't forget to tell your family your wishes!

    

Being fed!

Wanting to be fed! Sorry can't take you with us to the pub!

A Dedication to 1500 Families and Many More ...

7500 plus people waiting for an organ across the UK

Today just happens to be my 500th day of waiting for my heart and lung transplant.

Now I think good luck and good fortune have both been on my side this last 500 days. I have managed to stay stable and reasonably well and I have managed to adjust to my life somehow living with Pulmonary Hypertension and being on the Transplant List. There have been ups and downs along the way, but I'm still lucky enough to be on the transplant list and still hoping and waiting.

1000 people on average die every year waiting for a transplant - that's 3 people a day! 

Not so for many people though, during these 500 days, not so have some stayed well enough to withstand transplant while they endure the long wait, not so have they managed to maintain their health, not so has the medication and treatment kept working wonders for them. During this 500 days many people will have lost that chance of hope that sparkles and twinkles like a star, possibly just a few moments away, enticingly in front of them, keeping them motivated that something can be done to bring them back from illness and back into a normal life again.

While I've been waiting full of hope for 500 days, 1500 will have died while waiting for their transplant, because of the chronic shortage of organ donors. They would have had to face the cruel fact that they will lose their battle against whatever illness they are enduring, they will have to suffer not only being unwell, but knowing they are going to leave their family and friends behind and all the richness that life offers.  

During these 500 days many more will also have been informed that the waiting time has run out and they are no longer fit for the transplant process, yet they will have to continue the battle with their illness, this time without any future hope before them.

96% believe donating organs is the right thing to do!

Imagine those 1500 patients and more have families and friends that will be left devastated and having to cope too, and the tragedy and rippling effect of this shortage of organ donors can be multiplied hundred fold.

I think if 1500 people had lost their lives in a tragic disaster, then there would be a national outpouring and demands and enquiries to know how such a tragedy could be averted, but we are losing all these people quietly and it is slipping by unnoticed, the tragedy is only unfolding within each family, so little gets done about it.

Only Around 30% - The amount of registered organ donors!

 
So why don't people sign the Organ Donor Register? Why is it all so complicated to get people to sign up?

70% -Haven't joined the organ donor register!

Well I only have to look at my own story to see some answers there. Three years ago I was happily getting on with my life, happily enjoying my family, happily enjoying my teaching and happily enjoying and making most of what life has to offer. Dare I say it? I was rather ignorant to the world of transplants because my life had never been affected personally by it. Of course I've been profoundly touched by illness and death, that is part of everyone's life, and not just through family and friends, but through various media too. That said, however, I had never met anyone with a very rare illness or anyone who had had a transplant. All the illnesses I have encountered through friends and family have been various cancers and more common heart and lung disorders and much of what is presented in the media concerns these diseases. That speaks for itself really, of course we need to know as much as possible and be fully aware about these diseases, it is more than likely at sometime in our lives we will be affected by them or someone we know will be and we want to be best informed how to cope or recognise the symptoms. I suppose it is just less common to be affected by transplant in your life.

Around 90% of families are supportive if the potential donor was on the NHS Organ Donor Register 

            Around 40% plus of families fail give consent  

So never having been personally affected and busy getting on with living, I didn't really give much thought to organ donation. I knew that Rob, my husband, carried a donor card and wished to donate his organs if he were to be a victim of tragic circumstances and knowing this don't think I would hesitate to give my consent to his organs being used to save lives.  I suppose, also, knowing this I thought if anything happened to me, then he would decide to do the same for me. I didn't ever really stop and consider how hard this might be for my family in tragic circumstances and I suppose I just pushed it to one side and thought well it's probably not going to happen to me anyway; these things happen to other people! I never in my wildest dreams stopped to consider that I might need a transplant, let alone three organs. I suppose no-one really likes to think too deeply about whether they may be in a tragic accident or not or that they may need a new organ, because they are incurably ill.

96% - The amount who would take an organ if they needed one!

So I guess just from my own experience that it is just complacency and a reluctance to confront the fact that you may be ill or die tragically and this being an unlikely event that means most people don't bother to sign the organ donor register. Let's face it, it isn't really a natural daily occurrence to be thinking about organ donation and transplant unless you are being affected by it somehow. Sometimes when we talk of transplant, it may imply that we are wishing someone to die, so that their organs can be used, but it really isn't like that at all. It's just hope that if there were to be an unavoidable tragic death, which does happen and often, then out of that tragedy some good will come and someone may be given a new life, because that is what the donor has wished for in the event of something tragic happening to them.    
         
So to save all these tragic deaths continuing, we have a culture that needs to change now and we need to make organ donation a natural process and thing to do, for those people who are willing to donate.

It was pleasing to find out this week from Papworth Hospital, that ITV/ITN are running a project to raise awareness of organ donation. They are planning to dedicate a day in February to a campaign to increase the awareness of the need for organ donors, under the title 'Have a Heart'. They plan special programmes to highlight the desperate need for more organ donors. Look out for 'Daybreak', possibly on the 13th when my very special and inspirational friend Stacie will be appearing to tell everyone about her life with Pulmonary Hypertension and what it is like living on the Transplant List. ITN are also hoping to film a real transplant operation taking place at Papworth Hospital, if one so happens to occur during the next week or so and I know several of us have consented to filming in the hope of raising awareness should we be lucky enough to get the call. It is the real stories, from patients themselves that can make a difference.  I'm really hoping that their programmes will get the momentum going and get people thinking and talking about transplant; it is fantastic that a big media organisation is going to do this promotion on our behalf.    

By registering to be an organ donor, you could save or enhance as a many as 9 lives!

Most people will never be in the predicament of either being an organ donor or an organ recipient, but a few of us do find ourselves in unusual positions. Of course my life changed profoundly two and a half years ago when I was diagnosed with a rare, incurable and eventually terminal disease and suddenly found myself needing not only one organ, but three. I was suddenly woken up to a whole new world of transplant, well not just woken up, but brutally kicked out of bed and shoved right into the middle of transplant's midst! Suddenly I was prepared to not just take one organ, but three and in turn prepared to give my organs to others should anything happen to me, also I've agreed to give my diseased organs to research to help others just for good measure.

So my attitude was changed in a very dramatic way, but luckily and hopefully for you, you won't to need to go through any of this drama to start making that small change; all you need to do to help this change happen is simply to stay on your computer for five more minutes and if you haven't done so already:

sign up to the Organ Donor Register: www.nhsbt.nhs.uk/

sign the epetition for the 'opt- out' organ donor scheme: http://epetitions.direct.gov.uk/petitions/38220

 

Finally, don't forget to tell your family your wishes!

New Year's Day 2013 Now 468 Days of Waiting...

Happy New Year to everyone! We are well into the new year now as I write this and as we entered News Year's day I entered my 468th day of waiting, waiting for that special phone call, waiting for my new shiny heart and lungs, waiting to feel better, waiting for my life to be changed once and for all. It is, I suppose a very special wait, so I am trying hard to be extra patient, more patient than I've ever been in my life before, patiently waiting for my gift of new life. I think there is an old saying, 'good things come to those who wait', so I am hanging on and when the time is right I firmly believe my patience will be rewarded.

Sunrise on Dalham Estate, Milnthorpe, Cumbria

After the problems with my heart that I had before Christmas, I started the new year very cautiously, dipping my toe into it, unsure whether I really wanted a new year to start, wishing I could stay in last year as I had managed quite well last year all things being weighed up. But the end of the year brought me a scare, which left me with the worry that I may be deteriorating, which is what will happen at some point, so not unexpected and I'm left feeling a little uncertain and worried about what a new year will bring.            

Anyway New Year's day is behind us now and I am well and truly back on my feet again and ready to embrace all that this year will bring. I'm optimistic that this could be the year that my life is changed and I'm determined to continue with my own personal campaign to increase the number of people on the organ donor register.

River Bela, Milnthorpe, Cumbria

For starters I will ask everyone who is a British citizen to sign the on line campaign to the government for the 'Opt-Out System'. Sadly during those 468 days of my waiting, 1404 people will have died whilst waiting for an organ. They are mums, dads, sons, daughters, brothers, sisters, husbands and wives etc. just like me and you. Remember that our government are sitting on their laurels and doing absolutely nothing at the moment to help the cause for organ donation, while three people a day die unnecessarily. Most other countries are way ahead of us with higher numbers on the organ donor register and more organs available. This country is facing a chronic shortage of organ donors, whilst our population is growing and growing. Signing the petition is as easy as apple pie to do, and you are even already on a computer or phone if you are reading this. So click on the link below, complete your name and address and sign the petition, you will then receive an email that just asks you to click on a link and hey presto it is done!

http://epetitions.direct.gov.uk/petitions/38220  

I know most of my friends and family have now signed to be organ donors and I really appreciate your support and that you have made the effort to do this, so a really big thank you to you all. Remember to tell your families though so they know your wishes. If anyone reading this would still like to sign the donor register, here is the link below, again it can be done in a quick instant from the computer or mobile you are on now:  

www.organdonation.nhs.uk/

Thankfully, you are more likely to need an organ than have to give one. Ninety per cent  of people would take an organ, but only thirty three per cent have signed the register. If you would be prepared to take an organ to save your life then sign up now and be prepared to give! 

It seems to have been quite eventful in the transplant world over the festive period. My friend, who has had two heart and double lung transplants, is doing well and very, very slowly beginning her recovery. She has been in our thoughts and prayers and still is.

At the House of Commons, Rob and I met Sue Reid, who is Will Pope's aunt, Will was featured in the ITV 'Tonight' programme before Christmas, 'Waiting for a Heart' and his family and friends have been campaigning furiously to raise awareness of organ donation. They have a very public campaign and have been featured in the Daily Mail. Will got his much needed new heart on New Year's Eve. He is struggling at the moment and we are all hoping and praying that he pulls through. You can follow Will's story on WillPope.co.uk.  

Floods on Dalham Estate

Rob and I also met a lovely gentleman called Steve Gazzard while we were at the House of Commons, Steve's daughter Sarah had been waiting for a double lung transplant, but because of the chronic shortage of organs, Sarah sadly died while she waited. Sarah left behind a loving husband and three young children. Since Sarah was diagnosed Steve has launched several local campaigns to raise awareness of organ donation and he too was featured in the Daily Mail this week, you can find it on daily mail online. The article was very moving and when Steve stood up in the House of Commons to speak about his campaign and his daughter and to give his views to the All Party Parliamentary Committee, I don't think there was a dry eye in the room. 

Back to getting on with living life now, Rob and I took Rose down to Bournemouth so she could get herself ready for her new term at University. I had dithered whether to go or not, unsure about being a long way from home in case I wasn't well again. In the end I decided to throw caution to the wind, when I had one of the episodes with my heart before Christmas, I was on my own as Rob was picking Rose up from Bournemouth and I thought maybe at least I would be with someone if I went with them this time and you can still phone 999 in Bournemouth! This felt like a turning point to getting back to normal again. We had a good journey there and back again and I think its helped me in getting my confidence back to start venturing out again more now after a very quiet Christmas.  

Dalham Estate, Milnthorpe, Cumbria

As I write this, I have now been waiting 475 days, I am beginning to feel like Robinson Crusoe, but I suppose I've a long way to go to beat him, he waited 28 years to be rescued! I suppose if I could manage to wait that long, it really wouldn't matter about the transplant would it? I'd be the grand old age of 80!