April

April, Dear April

April, dear April, I beg you come soon-

And bring your sweet primroses too.

Let them join in with the daffodils' play,

As skies offer sunshine anew. 

April, dear April, my blessed spring child,

Ornate in your yellow and white,

Teasing the birds into trilling their songs

And dancing to music of flight.

April, dear April, come enter my dreams

And rid me from cold winter chills,

Banish the rain and those blustery winds

And warm up our countryside hills.

April, dear April, I know you can't stay-

You have to move on 'till next year.

And though I shall cherish the glory of summer,

You'll always be my month most dear. 

By Mark R Slaughter

We had a very quiet and lovely family Easter and Easter Sunday was special when we had a family get together over a roast lunch cooked entirely by Rob; we dished out Easter eggs, played an entertaining game of scrabble (Oli is such a bad loser!) and generally just chilled out and relaxed. Easter Monday saw the beginning of my favourite month April. I always conjure up in my mind Easter and spring and the expectation and promise they both bring when I think of April. It's also the month when I was born making it even more special for me. Usually Easter means a holiday too for most people, whether it is the Bank Holiday Weekend or the longer school holidays and this holiday always seems the turning point for me when winter ends and spring begins. So think April; think Easter; think holidays; think birthdays; think longer days, lighter days; think gardens and flowers; think new life and new beginnings and April thoughts for me just go on and on...  

 

Daffodowndilly

She wore her yellow sun bonnet,

She wore her greenest gown,

She turned to the south wind,

And curtsied up and down.

She turned to the sunlight,

And shook her yellow head,

And whispered to her neighbour:

'Winter is dead."  

By A A  Milne

A few facts about April: April always starts on the same day of the week as July every year and January in leap years; April always ends on the same day of the week as December every year!

After my stay in hospital just before Easter, I have been doing really well and although we have had to fit in a few quick visits to the warfarin clinic and a CT scan at the local hospital, since my last blog post we have just been like any other family enjoying the Easter break, just relaxing and having a more carefree time. Rob has been tidying up the garden and I have been spring cleaning the summer house in readiness to enjoy some lighter nights and sunnier, warmer weather. We have had quite a lot of sunshine here, but we are still waiting for that cold wind to disappear once and for all now the snow has finally melted. Still with the sun out, getting outside on the garden and the lighter nights, it does feel a bit more like spring time now. 

My birthday is in April and with the spring equinox on March 21st, Aries, my star sign, is the first sign in the zodiac. We are supposed to be leaders of the pack and the first to get things going and our strengths are supposed to be initiative, courage and determination. Well I'm not sure on all of that, but I do know there are some things that I am very determined about. One is to keep as well as I possibly can in readiness for my transplant, so I'm now going to try even harder to build up my strength by keeping active and doing some very light exercise. Another, as many of you well know, is to keep on raising awareness of both Pulmonary Hypertension and the need for more awareness about organ donation. It feels a quieter time now, but my thoughts are never too far away about what we can do next.    

My birthstone is a diamond, which is supposed to give protection from severe diseases, so I guess I could always get myself a few more diamonds and see if that will help along with my medication! The ancient Romans also believed that when diamonds were worn on the left arm, next to the skin, then this would give the wearer bravery and daring, so I have now got this vision of myself being wheeled down to the operating theatre for my transplant with my left arm being draped in diamonds...

On a very serious note now though, Arians are supposed to like championing a cause, so I'm going to do just that to end this week's blog. As I write this, it has now been 562 days of waiting, which is getting rather a long time. In this time at least 1686 other patients like myself, waiting for a transplant, will have lost their lives while they have been waiting. With 1686 patients comes 1686 families and with 1686 families comes dozens of friends, so literally thousands of people are being needlessly affected because of the chronic shortage of organ donors and the general public's lack of awareness. Please, please, please encourage your families and friends to sign up if they haven't already. You can find the website is at the bottom of my blog.    

Another Milestone...Sarah's 21st

Big Ben glistening in the early morning sun

Ready for a London Marathon!

It is about two and a half years ago that I was diagnosed with Pulmonary Hypertension and following that diagnosis things began to deteriorate quite rapidly, the medication didn't seem to be getting a grip on my illness and exactly two years ago I was referred to the Transplant Team.

London Eye

Two years ago they were desperately trying to increase my intravenous medication Epoprostrenol, I had been established on it a few months prior to this, but it still wasn't working efficiently enough and I was still having severe symptoms of PH, which in my case meant passing out trying to do the simplest of tasks, because my heart wasn't strong enough to cope with the extra pressures it was dealing with. They were not having much luck though and it was a stop, start process, with the medical team trying to increase the drug dosage and my body not tolerating what they were trying to do. I can just remember it feeling like an endurance test or torture as they increased the dose each time.

Nelson's Column

Eventually the doctors gave up and decided I was unable to tolerate any more and it was time to change tactics, as they hadn't managed to reach my target dose. I knew I had done my best and they decided to try an oral medication, Sildenafil, and the cycle started all over again and in the end I just had to discontinue taking the oral drug too. Unfortunately I had an unusual and bad reaction to both  drugs, but eventually things settled again, I was able to take the Sildenafil and get myself into a safer place with my PH and was given medication to help with the side effects. This was a huge turning point as I began to stabilise and now after two years of stability, with a few blips along the way, I can look back and know I have been one of the lucky ones.  

When all that happened, to say I was shell shocked is a huge understatement and although I remember trying to be as optimistic as I could in the circumstances, there were times when dark reality took over and I had to face and confront the fact that I may not get to see some of the things that people normally just breezily accept in life. Rose had just had her seventeenth birthday and Sarah turned nineteen while I was back in hospital. I didn't just have to face the fact that I was now missing out on my old and simple daily life, but things flashed in front of me, such as the girls reaching eighteen and twenty one, them graduating, them getting married and them having their own families and me becoming a grandparent. The bigger milestones in life that you expect to see were being taken from my grasp and I felt like they were slipping completely out of reach at some low points. At the same time I was still trying to find strength and was opening my arms out wide to snatch them back. I was still hungry for life, whatever was happening to my body, I wasn't prepared to let myself stumble further away from all that I loved in life.  


Weekend brought one of the milestones I could only of dreamt of two years ago, as Sarah turned twenty one on Saturday. We all celebrated together as a family. We had planned a surprise get together in London and we all stayed over. Unbeknown to Sarah Rose came all the way back from Bournemouth, David came back from Exeter, and we all travelled in to London ready to surprise her at dinner time. Oli had taken her for what she thought was a weekend away and she had no idea that we would all be joining them on Saturday night. He did a sterling job at covering up the surprise. I think he had a few hairy moments, where he had to tell a few white lies and at one point she was locked in the bathroom while Rob and Oli conspired at their bedroom door! It was a lovely moment in the bar when she came down ready for dinner and we were all sat there, the look on her face was priceless!

Covent Garden

We had a fantastic weekend and for me, well I had to keep pinching myself that I have managed to come this far and not only was I well enough to enjoy everything, but I had been well enough to dare venture into London and celebrate Sarah's birthday in a special way. Everything seemed magical to me, the birthday celebrations, being with my family and their loved ones, the sun shining on us as it did for once, the buzz and life of London. I savoured everything. The weather being so good enabled Rob to push me for miles in my wheelchair and we managed to visit the National Gallery and The Tate Modern, explore Westminster, St James Park, Trafalgar Square, Covent Garden and Southbank. I love exploring big cities and London is a special one for me, vibrant and teeming full of life and promise.

View from Southbank across to St Paul's

Horse Guard's Parade

So, this far in my transplant journey, I know I have been one of the lucky ones, managing to cope with my illness and all it brings, but managing to stay well enough and keep the severity of my illness at bay while I wait. I know it's a fragile situation and things could change any minute, so I know I have to make most of very moment.

Low Tide on the Thames

As I have been lucky so far, my thoughts are with those who haven't been so fortunate, those who have waited on the Transplant List and lost their battle, while I have been waiting 535 days, 1605 people will have lost their lives while waiting for a transplant. My heart goes out to all their families. There are also those who are not well enough to go through transplant too, something I know could have easily happened to me.

I've also been thinking a lot recently about all the courageous people who have signed up to be donors and especially those who have lost their own lives and with their families have given the gift of life to others. Without donors and their courageous families, those of us who are on the Transplant List would have little hope. It is the strength of those families and knowing there are families who are so willing to give that brings great comfort to us when times feel tough.
   

       

Early evening view across the Thames to Westminster

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 

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 

     

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!

Snow Day

This week brought the snow to many areas and Hertfordshire got a fair sprinkling of it, especially on Tuesday when it snowed heavily for most of the day. I both love and loathe the snow, I love it if I don't have to go out in it in the car and I hate it with a vengeance if I've to drive in it. So Tuesday was a lovely day with no medical appointments, no shopping required, no need to go anywhere and a beautiful snowfall to watch and enjoy.

In my days when I used to work, before PH, I used to do everything I could to try and get into work in bad weather conditions and on several occasions I've found myself completely stranded. Once I was stuck with my two young daughters in the car, I had picked them up after school and work and it took us nine hours to drive home. We were completely caught out and unprepared at rush hour and the journey home was frightening and scary as we skated up and down hills and round roundabouts. On that particular evening, mobile networks were down everywhere and we were unable to make contact with Rob and let him know we were safe. Rob managed to get all the way home on the train from Belgium in the time it took us to get from one town to the next and was relieved when we eventually returned from school at nearly midnight and driving with the petrol on red. The following year, it happened to us again, but this time we were more prepared and after being stuck in traffic for a few hours, I dumped the car at the roadside and we set off in our wellingtons on the walk home, this time we fared better, only five hours to get home!  I can think of many a hairy moment most winters after that when I have tried to skate and slide to work in the snow.

The last time I got caught out driving in the snow was three years ago, just a few months before my diagnosis of pulmonary hypertension. This time it was an evening and we were having our work Xmas party in a village pub, just a few miles near to where I live. During this period leading up to the Xmas party, and totally oblivious to being ill, I had many an evening where I felt more tired than usual and kept feeling that I was coming down with something. This evening felt like one of them and I very nearly didn't go out, but not wanting to be a misery, I decided to make an effort and go out. There was a forecast for some slight snow showers, but nothing that worried me at all. While we were in the restaurant, we could see the snow coming down heavily and blizzard like conditions developing through the window and before we got to dessert, some of us thought it may be a good idea to try and get home. I had to literally dig my car out of the snow with my hands and try and wipe the windows clean in snow that was blowing and blasting down and sideways across the nearby fields.

I decided not to go on the narrow country roads way home, which should have been the quickest, but to try and make it to the main road, which would perhaps be clearer and better lit. As I slid down a hill, there was oncoming traffic that had skidded and blocked the nearest through road. A kind gentleman, directed me to another road, which would take me to the main road, so off I went precariously slipping and sliding everywhere in my mini, not a car I would recommend for snow driving! I then found myself on some narrow kind of track in the middle of nowhere, in a blizzard and I couldn't tell which were roads or fields. It began to feel like something similar to a horror movie and I had to tell myself more than once to pull myself together and just concentrate on finding the main road! I prayed as I drove along that nothing would come the other way and miraculously it didn't. When I got to the main road, now quite a few miles in the the wrong direction I should have gone in, my car then wouldn't make it up the slight incline to get on the road.

People are always saying how strangers don't stop to help each other anymore, but two cars stopped that were passing along on the main road, and some complete strangers literally did all they could to get me up and onto the main road, giving me good advice and pushing me and my vehicle up the hill. I knew then it would still be a long walk, as I was miles further away from home, but I felt less panicky as I was on a main road and it was well lit. I will always be grateful to those people who stopped and helped me that night, especially as they were struggling too. I drove along as far as I could until I reached a bigger hill, where lots of others were stranded and the road was nearly blocked. There was a pub nearby, so I put the car on the pub car park, popped into the pub to check it was alright to leave it, remembered my walking boots were in the back of the car, as I had taken the children in my class for a walk that day, put them on and walked the few miles home in the wind and snow. I remember being so glad I had my boots in the car, the rest of my gear was evening dress and a velvet coat! I managed to get a message to the girls and as I reached the outskirts of my village, Rob and the girls were driving along to pick me up. I don't think I have ever been so relieved. Also, I didn't know the delicate state of my health at the time, so I think I was lucky I made it home all in one piece.

So those are my snow stories, I think most of us have a few of them, and I relished the thought this week that I didn't have to go out and set off to work in it! Instead I was in my PJs watching the traffic slip and slide down our road, drinking coffee and enjoying being in the warm. In the afternoon, I decided I'd like to go out for a walk in it and take some photos, everything looks so beautiful in the snow. So we donned our wellies, got wrapped up warm and went for a walk in the park before all the children came out of school, so I could be the first to walk in it! Well I just wanted to totally indulge myself, sorry kids! Enjoy the pictures!


As I finish writing this we have had lots more snow just like the rest of the country and we are expecting more snowfall tomorrow.  On Monday we are supposed to be travelling to the Transplant Clinic at Papworth for my routine check. We will have to see what tomorrow brings now and review on Monday whether we think we will be able to get there and back safely.

Today I have been waiting for 486 days for my transplant, that means  1458 people will have lost their lives waiting for a transplant too, so before you go, if you haven't already: 


 - sign up to the organ donor register on: www.organdonation.nhs.uk/  

  - sign the epetition for 'opt-out' organ donor scheme:

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