Wednesday, 27 March 2013

Celebrating Easter in Photos

Daffodils, Milnthorpe, Cumbria, Easter, 2005
Wastewater, Cumbria, Easter 2006
I am looking forward to celebrating Easter with my family this weekend and still so pleased I got out of hospital in time to recover nicely ready for the holiday. Rose will be home and I can't wait to see her and have her around again. The only thing I could wish for at the moment is some of that lovely Easter sunshine we can sometimes get at this time of year. I was looking out on the garden at weekend and most of it was just a blizzard and I couldn't help but think of last March when I was enjoying the spring flowers in the garden and reading books and sunning myself up in the summerhouse. Those thoughts got me reminiscing about previous Easters we have enjoyed; we always spend some of Easter in the Lake District and sometimes we have escaped the disappointing Great British weather elsewhere. I ended up browsing through some of our old photos and this gave me a real lift and I thought I'd share some with you all, as I think we could all do with a bit of Easter sunshine to cheer us up. I don't think I'm on my own in wishing this coldest March ever is soon over with! Enjoy the photo show!

Arnside, Cumbria, Easter 2007

Warmer climes, Tenerife, Easter 2007
Athens, Easter 2008

Looking up to the Acropolis, Athens, 2008
Back to snow in Cumbria, Tarn Hows,  Easter, 2008 

Wastwater, Cumbria,  Easter 2009

Cherry Trees, Istanbul, Easter, 2009

Magnolia by the Haghia Sophia, Istanbul, Easter 2009

Mosaic in the Haghia Sophia Mosque, Istanbul (once a Christian church) Easter, 2009

Tulips in the park, near Topkapi Palace,  Istanbul, Easter 2009

Coniston Water, Cumbria, Easter 2010

River Levens, Nr Levens Hall, Cumbria, Easter, 2010

Cherry Blossom, Notre Dame, Paris, Easter 2010

Notre Dame, Paris, Easter, 2010

Glorious Blossom, Notre Dame, Paris, Easter, 2010

Cumbrian daffodils, Easter 2011

Cumbria, Easter, 2012

Windermere, Cumbria, Easter 2012

Camelia, Easter, 2012
So you can find sunshine and flowers at Easter, but sometimes it's better just to cheat if you can and escape to warmer climes! I would just like to wish all my blog readers a very happy Easter wherever you are and hope you enjoy the holiday whatever the weather. 

Easter is significant in that it symbolises new life and as I write this blog I have now been waiting for my chance of a new life for 555 days. So if you are reflecting on Easter and want to make a pledge and do a good deed, consider signing up to be an organ donor or just help us mobilise the Government into action by signing the petition to make them discuss the 'opt- out' organ donor scheme.    

If you want to sign up to the organ donor register click on:

You can help us get the Government looking at organ donation by signing the epetition: 

Saturday, 23 March 2013

Spring, Snow and Feeling Inspired

No spring flowers, enjoying the orchids indoors instead
I am back home again now after a very positive hospital visit. I'd aimed to be home for Easter and today I cannot wipe the smile off my face because I've got to come home a whole week earlier than I anticipated. The up- titration of my intravenous medication went really well and I've managed to undergo and tolerate three increases. As each day went on, each day I was more and more chuffed, each day the doctors were more pleased. By Friday they said I could go home and it was smiles of delight all round; Rob and I were beaming and all the doctors and nurses were too! It had all gone unexpectedly well and the only reason they didn't go for a fourth increase was that it would mean a complicated switch to using two phials of Epoprostenol rather than one, which would be expensive as well as a whole new routine to adapt. One small increase wasn't really worth the expense or the hassle. We will start from there when they next need to increase and it will then be worth learning a new routine to make up the drug and the extra expense of using double the drug.
It's becoming the usual view!

I am so pleased how this has gone, not having to go through all the illness it has caused me in the past has been a massive bonus and to come home feeling as well as I was when I went in hospital is a first for me, and a wonderful and pleasant surprise. Best of all though is the knowledge that I am tolerating this drug, Epoprostenol, quite well and that gives me some security and promise for the future now; if things deteriorate again they will still be able to increase the drug now and I should be able to cope. For a long time, the ability to do this was unknown and it was always yet another major worry in the back of my mind. So the future while I wait this long wait now feels less frightening and I know there is still quite a way to go yet with increasing the medication, something I had no measure of confidence in prior to this week. The nurse even gave me some brand new pumps and spare kit for my IVdrug, so it feels like I'm starting over all again with this Epoprostenol, but this time on a much more and very positive note.  

Rob and I are feeling a bit shell shocked today, but for all good reasons!

Where are the daffodils?

I cannot thank the PH team at Papworth enough for all their love, patience and care while they looked after me this week. It is so nice to be with medical staff who know you well and all you have gone through; two of the doctors looking after me on the ward this week have been with me right from the very beginning of my journey with PH and were so supportive and encouraging, along with the specialist PH nurses and the other ward staff, many who have known me from day one as well. So, yet again, I can't thank them all enough. I also managed to see and chat to a couple of the Transplant Team too while I was there, which in turn helps me to get to know them better for when I go completely under their care. I was on the ward with my friend Sita too and it was really lovely to spend some time with her, she and Mikey are such an inspiration as they cope with one hurdle after another following Sita's transplant. It was so nice to see them both still smiling despite everything they have had to face.

I had been looking forward to seeing all the daffodils out in the garden when I got home, Rob had planted lots more bulbs in autumn, then we would get a good show to enjoy in spring. There hasn't been much chance of that though because, like everyone else, we have had heavy snow and it is still snowing heavily out there. The daffodils are now hiding under a thick blanket of snow, but I'm hoping they will be resilient and spring back when the snow thaws.  I am so looking forward to that, but for now I'm just enjoying simple pleasures, enjoying being home, having a lazy day and feeling very positive about spring when it decides to come, as well as having a lot more confidence in the future while I wait for my transplant.

If you want to sign up to the organ donor register click on:

You can help us get the Government looking at organ donation by signing the epetition: 

Sunday, 17 March 2013


This last day or two I've been busy getting ready to go back in hospital to have an increase in my dose of my intravenous drug Epoprostenol. This hasn't been done for a while and the doctors want to try and keep me stable, there have been one or two signs of deterioration lately and they also want to try and increase my exercise capacity to give me a better quality of life. Although they are quite pleased how my heart is coping, it is still not working like a 'normal' heart with its irregular beat and its extra loud sounding beats and murmur and the fact that it's still dilated on the right side, it is having to work extra hard to keep up with me all the time. I still find it hard when I see this written in black and white and when the consultant says it's not like a normal heart, although I have been living with this knowledge all this time now. I suppose it's another of those things that goes into that little set of compartments at the back of my mind, so I can carry on going forward into the future without thinking too hard about it. So this increase in Epoprostenol is planned to help my heart cope and work better.

Crono pump
Epoprostenol is a prostacyclin drug which relaxes and expands the blood vessels and stops blood cells clumping together. It increases the survival rate for PH and is similar to the natural prostacyclin produced by the cells lining blood vessels. It is only active in the blood for five minutes so has to be taken as a continuous intravenous infusion twenty four hours a day. The delivery system is complex and requires you to learn sterile preparation, operating a pump and caring for the catheter, line and entry site. I change it every twelve hours, to leave it longer would be at risk of causing an adverse reaction, my heart would suddenly have the help it needs to work withdrawn.

All the bits, twice a day! The orange line is every other day
It is stored as a powder and it's a complex procedure involving needles and syringes and dilutant solution to prepare it. Sterile conditions are needed for this preparation as the drug enters the blood system and is directed straight to the blood vessels in the heart and lungs, before it also reaches all the other blood vessels in your body. So infection is also another major risk as well as interruption of the drug.

I have to carry a spare drug kit and pump with me at all times in case of emergency and an interruption to the pump and I have to check the catheter entry site daily for any signs of infection and report any unusual symptoms I may be experiencing in case it's due to infection. An infection getting into the blood stream can cause septicaemia, which is life threatening. So having this drug does bring its challenges, but being well prepared and knowing the signs for infection these risks can be minimised.

All the extra bits: keeping sterile, sharps bin and waste tray
For many people on this drug there are some side effects, amongst them: flushing skin, jaw pain, headache, nausea, diarrhoea, palpitations and rashes, but they usually settle down once you are established on the drug. If you are a regular reader of my blog you will know that the side effects I usually experience are unusually severe, so I am preparing for a rough couple of weeks. It usually takes just a couple of days in hospital to have an increase, but my past experience has been at least a couple of weeks and then a good month or two to recover. I know it is the right thing to do though and can only follow the recommendations of the experts, I also need to demonstrate to the transplant team that I will follow the medical advice given, there will be no 'shall I, shan't I' when it comes to post transplant drugs.

Dressing change time
Obviously I am not really looking forward to all of this and will be going into hospital with some trepidation, but I keep asking myself, 'what is the worst that can happen?' Well at worst it may be several weeks of being ill and a month or two to recover then I will be back on my feet and feeling better with the added bonus of being half a stone lighter and energised for summer or at best I might be pleasantly surprised and be out of hospital in a few days with a new drug routine and a spring in my step! So I have been checking and repacking my hospital bag and trying to keep all the household chores up to date so I'm organised for Tuesday.

It had been crossing my mind whether to ring ahead to Duchess Ward and give them a few weeks warning that I am coming so they can book their holidays while I'm in there. Some people are remembered for all the wonderful things they do in life, but not so me with the ward staff at Papworth. I know I am well remembered as the 'puking patient'! Even the lady who kindly brings the tea  round commented to me at Christmas how well I was looking compared to usual, on that occasion they hadn't increased the medication! Really though I am looking forward to seeing familiar faces more than ever, if things go badly they are warm and compassionate and treat me as family and they will help me get through it and get me home again like they've done more than once before. Because I've been through the minefield of Epoprostenol, the specialist PH nurse at Papworth has asked me a few times to speak to patients who are facing having the treatment, so perhaps I haven't done that badly after all.

Aside to all of this, I was brought back down to earth even more by a letter I received from the Transplant Team, along with all the other patients waiting for lungs. The letter explained about all the various types of lungs I may be offered: smokers lungs; lungs belonging to a patient with a brain tumour; lungs from an older person; lungs from a drug addict or someone with high risk sexual behaviour; organs from a donor following a cardiac death; organs that have been placed on a machine to improve their function before transplantation. Now all this sounds very daunting and also highlights what a chronic shortage of organs there is. This had already been explained to me during my transplant assessment, but it is hard to see it all noted down in one long list, but I have had to agree to have whatever can be offered, the alternative isn't much option. I also trust the Transplant Team fully  that they will check the organs are fully suitable before going ahead with a transplant and I'm not going to dwell on it any further, it's yet another thing that can go into one of those storage compartments I have in my head.

We did have a chuckle though trying to imagine different scenarios of receiving lungs from someone who had the whole range of problems, what would the chances of that be? Well as long as they are good strong lungs, I would be more than happy to accept the wonderful gift and be grateful for evermore!

It's a good job there is a lot of support around at times, support from other patients who are going through the same, there are quite a few of us and support from patients who have PH. On Saturday it was good to meet up with the Papworth PH Matters Support Group in the Papworth village library. This group is for patients and anyone else who has been affected by PH. We had some excellent speakers, the chairman of the PHA Association UK, who just happens to be a PH specialist nurse too and specialist nurse from Papworth informing us about many aspects of PH. We enjoyed a lovely buffet, raffle and a good chat. Everyone is welcome to the meetings, you do not have to be a Papworth patient and next time in June we are going to get a tour of the path lab at Papworth and see what they get up to with all those blood samples they like to take, we will also have a talk about all the different blood tests we have to suffer! We will also be having a talk in September from one of the PH research team from Cambridge University. The help, support and professional information we get from the group is invaluable to us patients, so thank you to all those who voluntarily organise everything for us. The dates for the next meetings are: Saturday June 22nd; Saturday September 7th; Saturday November 30th. The meetings are held in the Papworth Everard Library Complex and start at 12 noon, everyone is made really welcome.  

Well it's time for all guns blazing: dentist, eye testing and a visit from BUPA to service my medical pumps on Monday and warfarin clinic on Tuesday morning and by Tuesday mid day I will be checking in on Duchess ward at Papworth. Mr G is now in charge of updating my blog ...  

If you want to sign up to the organ donor register click on:

You can help us get the Government looking at organ donation by signing the epetition: 



Monday, 11 March 2013

A Special Mother's Day Gift

Gold finch on the pond
Being diagnosed with Pulmonary Hypertension is always difficult; difficult for some because it develops as a secondary condition to an already debilitating chronic illness and difficult for others like myself because it just starts out of the blue and there isn't ever a reason found why you have got it. After having extensive tests, which lasted for months and were repeated at times, doctors found no reason for me having PH other than it had just started on its own and something in my past history may have triggered it: things like an emotional upset, something environmental or even childbirth. Well I have had all of those in my life, so it really didn't explain anything.

For me this feels like a difficult thing to bear and at times I wonder where on earth it all came from. Some people may not bother at all about this, I suppose the fact is if you've got it, you've got it and it just has to be dealt with. I'm a person who likes to understand how things work though and why and like to get to the bottom of matters so I can understand them better and make more sense of what is happening. It has always helped me along the path of this illness to understand it better, so I am in a position to make informed decisions about what steps are necessary in my journey to overcome it. That is just me and how I am.
Daffs in the garden, hope they don't spoil in the snow we are expecting! 

With Idiopathic Pulmonary Arterial Hypertension (IPAH) like mine something changes in the structure of the cells that line the insides of the blood vessels in your lungs, this starts to happen long before you have any symptoms that something is wrong. The cells on the outside of the blood vessels then start to try and compensate and in time they become thick and hardened and tighten and constrict. The blood vessels in your lungs effectively remodel themselves and stop working properly; it is difficult to get blood from your heart through your lungs and your heart has to work exceptionally hard to do this and that's when the high pressure builds up and the right sided heart failure begins to take it's toll.  It was alarming to find out all of this in the early days of diagnosis, but the only thing making it bearable was that it was happening to me and not one of my girls.

Just peeping! A little flurry of crocus
There are only 1 -2 cases per million people of IPAH in the UK and it is three times more common in women and one of the biggest thing that kept whirring round in my mind over and over again in those early days was whether I might be passing on this cruel disease to my girls and I was terrified where it all may end. As far as I was aware there was no one else in my family with this disease, but who would really know as it's a relatively modern disease with treatments only developed over the last twenty years or so and let's face it most medics today haven't even heard of it. I did know my grandad had died of heart failure and it was attributed to poisonous gas affecting his lungs in the war, so I had a bit of a doubt growing from that I suppose. So I broached the subject of genetics while I was in hospital at Papworth and fortunately just happened to ask a very knowledgeable doctor who was on the ward at the time, who had recently been working with the Papworth Research Team. He very kindly included some information for my GP in the letter he wrote to my surgery about my hospital visit and my GP agreed to refer me to Addenbrookes Hospital in Cambridge rather than to a more local Genetics Consultant within my Primary Care Trust. So I was really lucky to have this support.

Mother's day treats
The reason for the referral to Addenbrookes was that here they were just about to set up genetic testing for Pulmonary Arterial Hypertension (PAH), which at the time was not available to the UK genetic testing network, so we would probably have drawn a blank should we have been sent to the local hospital. When we got to Addenbrookes we were only the second family that they had seen, so we were right at the very beginning of this project and funding was still being sought to get the testing underway. The consultant was really helpful, gave us all the time we needed to ask questions and explained a lot about what was known about the genetics of PAH and what was planned for the future. He explained how PAH can be caused by genetic misprints or mutations in several genes that regulate the muscular dynamics of the blood vessels in the lungs. Only about 20% of patients with PAH have this caused by an identified gene called BMPR2. A smaller number, only 1% have a mutation in a gene called ALK1 and an even smaller number of families are also recognised to have mutations in two further genes.  So I gave my blood sample to enable the testing to be done. It would work like this: they would test just me for the known genes and then if they found I had mutations in these, they could then have a predictive genetic test for the girls.

Lakeland daffodils
The consultant also explained how funding was going to take several months as it was part of a larger national effort on behalf of all the UK PH centres to study the genetics of IPAH. They plan to take DNA samples of 1000 IPAH patients and undertake large scale 'next generation DNA sequencing' to see whether they can find entirely new mutations in other genes. If this is successful it may lead to new classifications of PAH and then they may be able to trial how different categories of patients respond to various treatments. I have given blood samples to be part of this study too. I do believe that sometime in the future a better understanding of genetics will lead to the breakthrough we need to cure PH. There is such a long way to go though.

To go through this process of genes testing obviously opened up a whole new can of worms for my family. The girls had been really keen to go ahead with all of this, right from the outset. They said they would rather know what they may have to deal with and be ready for it, rather than just go haphazardly through life never knowing. They were well aware that it may be better to be tested regularly if they carried the BPMR2 gene as if PH was to develop it could then be picked up and treated early. The earlier PH is treated the better prognosis you have. We decided that it would be best to take it just one small step at a time though, with no pressure on anyone as each stone may be unturned. It had to start with me and Rob and I were given an awful lot of information to help us, if a time came that the girls needed testing the consultant was happy to spend time with them and it would be totally up to them to decide whether to take matters further.

Faithful pansies, out in all their glory after a sunny Wednesday
For the gene BPMR2 there is only a 20% chance I may have it, there is a 50% chance the girls will inherit it if I do and even if they do inherit it, the gene may never be triggered to cause PH. So, understandably many patients do not want the burden of this and many people think what's the point of knowing you carry a gene and then worrying all your life when nothing may never happen. It is a difficult one that needs lots of consideration and therefore although we all felt we wanted to go ahead with it, we did so with a little trepidation and also with a view that we would need to revisit at each step of the way as we went along. However, my sample also went anonymously into the bigger project too and they will be able to proceed whichever way they need for that and for however long, so I have been glad we got involved.

I know there are some patients who say genetic testing for PAH is a waste of time and funds, but I disagree totally. I can only say that if it helps families to know and cope with the illness better then it is worth it just for that. Other people with more common diseases are entitled to automatic genetic testing if they want, but people with rare diseases like ours are not just because of funding, so I embrace the fact that something is now being done about that if PH patients so want it. Ultimately anyone who does go down this route is giving the PH research teams a whole lot of new data to use into the bargain and this wealth of data will bring knowledge and knowledge brings power. Power to start tackling this horrific disease in different ways. The genetics researchers also believe that if they can understand the genetics of PH better, then all PH patients may ultimately benefit from the findings, whether their PH is inherited, idiopathic or secondary to some other disease. So, personally I think genetics testing is well worth every penny.

Our consultant kept us updated over the months, how funding was coming along and how the laboratory process was being set up and eventually, it has taken some time, last week I got the best Mother's Day gift of all, I found out that I did not carry the gene BPMR2, the one most likely to cause the inheritable form of PH, and therefore as a family we were really relieved and delighted. We are still not totally out of the woods as they are preparing to test for gene ALK1 next, but my consultant explained that mutations in this gene are a much less common cause of inherited PH.  For me this is a present that money just can't buy, there now seems little chance that I will be passing on this dreadful disease to my girls and that is priceless.

Of course, it does not answer the question I have often pondered of what did cause my IPAH, but it doesn't feel that it matters so much now as long as my girls are safe; my biggest worry was the unbearable thought of my girls being struck down with this disease too and this has been dissipated now. We have all been unburdened. It has been a long wait and I have tried to put it in yet another little compartment in the back of my head along with everything else while we waited and tried to get on with normal life. I feel like it can come out of that compartment now and it is a worry that can now just float away. We will always keep an eye on our girls though, we know every sign and symptom and we will be watching carefully, every single day of our lives.

We just happened to be visited by a member of the Papworth research team last week while I was there and she asked us what it had felt like to go through this process, she was interested as they were the ones doing the research, but wondered what it felt like to be a patient actually experiencing these things. I think the words, 'worry, angst, trepidation, unsure, apprehensive, anxious' followed by 'relief, ease, comfort, reassurance, pleased, delighted' sum everything up!

We also got another lovely surprise in the post this week from Papworth Hospital, a thank you letter and card from them for taking part in their campaign with ITV News during ITV 'From the Heart' week and a souvenir CD of the ITV News broadcasts from Papworth during that week. So we were really pleased to have a momento of what had been a very busy and exciting week.

It has been a very good week in all followed by a lovely Mother's Day weekend. Rob spoiled me rotten, flowers, cooking meals and pampering me - he will say nothing new there - and Rose and I chatted on the phone - she is away in Bournemouth, but she left me a lovely present and card behind when we saw her last week - and Sarah and Oli came round for Sunday roast dinner, always my favourite time with my family...

147,000 people signed up to be organ donors during ITVs special From the Heart week:

If you want to sign up to the organ donor register click on:

You can help us get the Government looking at organ donation by signing the epetition: 

Wednesday, 6 March 2013

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:

You can help us get the Government looking at organ donation by signing the epetition: