A Miracle and My 'Annual' Christmas Trip to Papworth Hospital

Deer in winter on Dalham Estate, Milnthorpe, Cumbria

It has been a busy autumn through to winter and as the long dark nights and shorter days descend upon us and Christmas looms, I had only been thinking how I had done really well this year in only having one emergency visit to hospital and how we were coping quite well as a family with my PH and my transplant listing.

Early this month though we were suddenly shocked into the crude reality of the transplant world. One of our friends got her call, being the first of our little group who have been patiently waiting and a friend to many of us with Pulmonary Hypertension; we all waited with baited breath to see how she got on.

Lake Coniston, Cumbria in December 

For us it turned 'transplant' into real life, suddenly it became real that yes the phone call does actually happen and it is not what has now become to us, after our long wait, some mythical thing that dangles like a carrot in front of you. It made us realise just how unprepared we are: that although we have bags packed with some of the things we need there are other things that will need scrambling together at the last minute when we will probably be in a major panic; and our lines of communication to let others know what is happening hadn't really been properly thought out. So when we first heard of my friend's call these things began to spring to mind after we had got over the initial shock of her getting the call and during the long day of waiting to hear how things were going for her. For Rob, I think it made him realise just how hard things were going to be for him and the family as the wait to hear news of our friend became excruciatingly long, we could not even begin to think how hard it must be for them.

Unfortunately news unfolded that my friend's transplant was not looking very successful and hence another long, unbearable wait for news for many of us and especially the family. A sleepless night and another day passed, by which time we had begun to absorb that the risks associated with transplant that were described and drummed into us at the outset of our transplant process were indeed very palpable and were unfolding frighteningly before our eyes. I think every possible prayer was said that second evening; every possible positive sentiment, thought, vibe, intention, was sent by friends and strangers alike and in the morning we received the extraordinary and astounding news that a second donor had become available in the night and my friend was given yet another set of new heart and lungs the next day.  

Recovery is long and slow for any heart and lung transplant recipient and our friend is now making a very slow recovery and we are all still praying and thinking of her and her family.

For us, it has served to highlight both the worst and the best about transplant. The worst, that it reminded me of why I was filled with horror and dread at being told I needed a transplant - it has somehow become 'normalised' for me now, while waiting all this time, when really it is a long, long way and far removed from 'normal', with very high risks involved: the best, that miracles really happen thanks to some wonderful donors and their families, strengthening my hope and belief that my transplant will come when the time is right and be a success.

It has also made me think of the two donors involved and their families, who will be grieving this Christmas and I hope their families can in time take some comfort in the fact that their loved one has saved lives.

It is Christmas time and not too late if you haven't already to do some good and sign up to be an organ donor and tell your family:

 www.organdonation.nhs.uk          

Remember that the odds are you are probably going to need an organ rather than have to give one, but the gift of life to someone is the ultimate gift of all.  Make another miracle possible.

Rob set off on Saturday morning to get Rose back from university in Bournemouth, leaving me behind as a round trip there and back is too much for me to manage. His very words, as he left at the crack of dawn were, 'Behave yourself, you know what you are like!' By nine o'clock I was woken back up with a text to say he had arrived safely. I decided it was time to get up and sat up in bed. At this point I began to have a really bad 'turn' and felt sick, dizzy and and, just like old times, as though I was drowning and would pass out. My heart was beating far too rapidly for someone just sitting up in bed and I immediately knew something was not right. Somehow I remained very calm and told myself to just get back on the bed and lay propped up. My past experience of blacking out has taught me to get to a bed or chair if I can so as not to injure myself while collapsing.   

Luckily my mobile phone was by my bedside, as it always is in case I get the call, so I decided to just wait quietly and see if it would pass, if it didn't it was going through my mind to phone 999. I laid a while and I could feel my heart rate begin to slow down again and at this point Sarah just happened to text me, so within fifteen minutes she and Oli were down the motorway and with me. It seemed to have passed and I was pretty sure it may have been down to getting a kink in my Hickman line while I slept. So I decided no need for phone calls to the hospital and an easy day for the rest of the day. The following day I felt much better and it was a pretty normal day. 

Monday morning started off fine and after having an easy morning I just went up stairs very slowly, but by the time I got to the bedroom, it was all happening all over again, my pulse had hit over 170 but this time with no sign of any kinks or problems with the line, so we decided it was time to phone the hospital. I have had a good year, but always know that one day things will start going wrong again if I don't get my transplant soon, so for me this wasn't looking so good and was very scary. it was very reminiscent of old times before treatment. At times like this, the transplant can't come soon enough. 

Papworth admitted me straight away and I was all wired up to the heart monitor to see if they could get a recording of what was happening and this is where I stayed for the next three days. When they admitted me, the consultant told me, 'not to bank on getting home for Christmas.' A lot of my friends have said, 'it's like deja vu', two years ago this happened to me and last Christmas I had to make an emergency dash there, because of a problem with my Hickman Line. My head doesn't want to be in hospital for Christmas, but each Christmas, my body tries to do otherwise.     

After many tests the doctors were unable to pinpoint anything unusual or specific, so for now, between us, we decided I would be better at home and we would see if anything else occurred. If it does, they will take me back in and run the tests again. If there is still the same outcome they will more than likely decide it is time to increase my intravenous medication and probably take out my existing Hickman line and replace it with a new one and if they can get a recording of what is happening, they may well do a heart ablation if this shows an arrhythmia. For now they do not want to risk my health further by doing anything that may not be necessary, so at the moment I am confined to the house by Rob and the girls, who want me here for Christmas and I'm not being allowed to do very much. We have cancelled some of our plans for Christmas too, as I'm not allowed to overdo it and I don't want to risk missing Christmas with my family. 

The staff at Papworth were amazing yet again and couldn't do too much. I even got chance to speak to one of my transplant co-ordinators, who gave us lots of reassurance about the transplant operation. There were many familiar faces on Duchess Ward, although I hadn't actually been there since October before last, many of the nurses went out of their way to come and say, 'hello' and we had a bit of a joke going by the end of my stay that I always try really hard to be here for Christmas, but haven't quite managed it yet! 

So I am hoping if I take care this next day or two I will be enjoying Christmas with my family and as this is my last blog before Christmas, I would like to wish everyone who reads my blog a very merry Christmas and a healthy New Year.  

         

The House of Commons

Early morning at Westminster 

Westminster Bridge

We woke up nice and early, I had been a little restless in the night and was by now feeling quite nervous. It has been over two and a half years since I have spoken in front of an audience and not being well added to my nerves and confidence. Once we were up and about though, I was feeling more confident that I would be able to do it. We made an early start, Rob pushing me across Westminster Bridge on what was a cold, but very beautiful morning. There were stunning views of the London Eye and the House of Parliament and the River Thames as we made our way over.

Cromwell Statue near Cromwell Entrance

Passes for the day

We didn't know what to expect really when we got there, but made our way across to the Cromwell Entrance as we had been instructed, asking a policeman or two for directions as we went. Once there, we showed our invitations and the staff could not have been more courteous and pleasant as we were ushered inside. Here we had to go through security and I had to explain to the staff about the metal pump that I have to wear and the needles I was carrying for my drug kit.

 Westminster Hall

We made our way to Westminster Hall, where we were then escorted to Room 11, where the meeting was to take place. It was quite a long way from the entrance, so I was so relieved that we had made all the effort to bring the wheelchair with us. The way to  Room 11 was very wheelchair friendly with ramps and lifts along the way and the staff were really friendly and helpful. As we were making our way, we were surprised to see Baroness Tanni Grey-Thompson go whizzing past in her wheelchair, but there was no way Rob could keep up with her speeding along, after all she is a paralympic wheelchair marathon runner. We have a way to go yet on that score, being quite new to the wheelchair community. Once outside Room 11, we met up with Anne and her dad and it was nice to see a friendly face, which helped me feel more at ease. Our friend Tom also arrived, who had asked to come and support us.

Inside Room 11

We were ushered inside and immediately some members of the panel came and introduced themselves to me  including MP Chris Williamson, who was chairing the meeting. It all felt very friendly and by this time I was feeling a bit more relaxed. The meeting soon got underway and I was pleased that once the chairman had welcomed everyone, he introduced Rob and I to do our bit straight away, which prevented me from getting nervous again. Rob and I spoke of our lives before and after my diagnosis of Pulmonary Hypertension. We explained about what PH is, its symptoms, the drugs and side effects, the impact of it on our lives, what it was like being told I needed a transplant and then living on the transplant list. Rob finished by talking of the need for organ donors and reminding everyone about the latest statistics for the donor register.  

The members of the panel then explained their roles and involvement with organ donation and transplant and gave updates on their relevant fields. Their roles were varied and covered many facets of the 'transplant industry' and their input to the meeting prompted very useful discussion from the audience. Many members of the audience were members of the public like ourselves, who's lives had been profoundly affected by organ donation and transplant.


Some important points came from all the discussions, which will hopefully be taken forward by the panel:

• there are c.7,500 people awaiting a transplant of some kind with some 19 million registered donors. 3 people a day still die needlessly waiting for a transplant; 
• although family consent rates are high at 90% for someone who has previously registered as a donor, these rates drop to a shocking 40% in England for someone who hasn't previously registered to be a donor: a very emotive discussion ensued on this and calls by the audience to get the law changed e.g. "opt out";
• more education is needed to make organ donation part of our culture, a way of life, a social responsibility - something that becomes the norm. Scotland has been very successful at improving rates by blunt and even shocking campaigns and, importantly, has included an awareness of organ donation in the school curriculum; 
• there is a need to continue the work to increase the numbers on the organ donor register through both local and national initiatives and a sharing of best practices;
• although it looked likely that Transplant 2013 would fall short of its target for increasing donor numbers (50%), a healthy percentage increase has still been achieved (34%);
• a lack of funding is impacting on national marketing but in any event the view was more could be done nationally to champion and support local initiatives; 
• local initiatives are usually very effective where someone affected by transplant is known and there is a personal story, and play a huge part in increasing the numbers on the donor register;
• a continuing education and training of hospital staff (even possible targeting ) to ensure that opportunities for donor organs are maximised and not missed; 
• maximising use of social networking and media to publicise organ donation;  
• in certain areas, targeting of prevention measures could be more effective (e.g. 20% of people awaiting liver transplants) have preventable conditions.   

Afterwards we got chance to chat with everyone who had attended the meeting and met some very inspirational people, who were campaigning in varied ways to increase the numbers on the donor register and awareness of organ donation and transplantation.

Anne and I in Westminster Hall

It was an exciting day and has inspired us to think about how we can play our part in increasing awareness of organ donation and transplantation. We had time to catch up with Anne and her dad and we had lunch together in the House of Commons cafe, which was really lovely and then we headed off back home. The rail journey went very smoothly and staff at King's Cross were again really helpful and courteous and couldn't do too much for us. Below are details of some of the people we met and a draft of our speech if you are interested.

 

Some of the people we met: 

                                                                                       Chris Williamson MP
                                                            Chair, All-Party Parliamentary Group for Transplantation

@ChriswMP

Speakers panel:

Dr Paul Murphy

National Clinical Lead for Organ Donation

Keith Rigg

Past President, British Transplantation Society

Jacquie Spencer

Team Manager for South-West organ donation

Professor Martin Lombard

National Clinical Director for liver disease

Dr Katz

 Chief Rabbi’s office

Some of the people making valuable contributions to the debate

Chris Bryon -Edmund , whose daughter Lottie was the youngest baby in the world to survive liver transplant:
www.chipbe.com
Twitter: @ChipBEblog
@iLiveiGive

Sue Reid, Aunt to Will Pope, who is waiting for heart transplant and featured on Tonight's programme, 'Waiting for a Heart'
Twitter: @PopePower
Facebook: Let's Raise Awareness for Will Pope & Organ Donation

Steve Gazzard, who lost his daughter Sarah recently waiting for transplant and is now doing great work increasing donors in Exmouth

Facebook: Steve Gazzard 

Speech Draft

Good morning, my name’s Rob Graham. In a minute or two I will introduce you to my wife, Kathryn, but first I want to give you a little background about us, our life before Kathryn was diagnosed with a serious heart and lung condition and a little bit of an explanation surrounding the condition itself.

Until just over two years ago, we were a fairly average couple with two teenage daughters. I was working full time in the City and Kathryn was a successful full time primary teacher. We enjoyed many normal things as others do: travelling abroad, spending time outdoors - we love the countryside, especially the Lake District where we would walk for hours - gardening and meeting up with family and friends and making the most of having London just half an hour from our doorstep.

In just one day in June 2010 our lives were changed forever when Kathryn was diagnosed with serious heart failure as a result of a previously undetected lung condition. Within six months we both had to give up our careers and many of the hobbies we loved doing.  Kathryn was referred to Papworth Hospital , one of the few specialist hospitals in the country who can treat her disease and, under their care, I am delighted to say that Kath is sufficiently stable for the time being which has enabled us to be here today – that said it has been a major effort on Kathryn’s part to be here - this is in fact our first trip into London together for over 2 and a half years.

We have experienced just about every emotion imaginable. Two of my low points were the day we were told that she had severe heart failure and the day I had to dial 999 after she had an unexplained seizure and I could see her heart pumping against her chest almost like it was out of a cartoon. If I’m being totally honest with you, and I haven’t told my closest friends this, on more than one occasion I thought I was going to lose her. I wouldn’t wish anybody to have to go through similar experiences.

So what is the condition that Kathryn has? Idiopathic Pulmonary Arterial Hypertension. It’s a bit of a mouthful, isn’t it? Most people when they hear this, just pick up on the word “hypertension” and they usually nod knowingly and then tell me that they’ve got a bit of high blood pressure as well. If only and we wish….

In fact PH, as it is known in our world, is a very rare condition and it is generally described as a narrowing and hardening of blood vessels and arteries in the lungs which causes the blood to struggle through, building up high pressures in the pulmonary arteries which carry oxygen to and from the heart. The right side of the heart then comes under considerable strain as it works harder and faster to pump the blood carrying oxygen through the narrowing arteries, and this can eventually result in heart failure.

PH is often secondary to other conditions – blood clots, autoimmune disorders and congenital heart disease or, as in Kathryn’s case, it can start on its own as a result of a genetic mutation and it may, therefore, be potentially hereditary - we are currently partaking in pioneering genetic research to see if our daughters might have the mutated gene. The type of PH that Kathryn has is, unfortunately, without transplantation, incurable and progressive.

There are various drugs that can be used to treat Kathryn’s condition but these only serve to alleviate the symptoms, improve the quality of life and slow down but not stop the progression of the condition.

So what is it like having PH and being on the transplant list? Let me hand you over to the expert – my wife, Kathryn.

Hello everyone, thanks for giving me the opportunity to speak about my condition.

Well, the main symptoms are breathlessness, extreme fatigue, dizziness, fainting and chest pain. These can happen undertaking the simplest of tasks therefore limiting dramatically what you are able to do in a normal day.

I usually need to rest and sit down after ten minutes of mild activity and can only walk at a very slow pace for about ten minutes before I get breathless ad need to sit down. At worst I used to faint doing the simplest of things such as getting out of bed or just bending down as my heart couldn’t cope with the strain. For someone with PH, even climbing the stairs can feel like conquering Everest.

Two years ago and only a few months after diagnosis, my PH symptoms were classed as “end stage” and along with a general host of drugs to help my body – I take around 12-14 tablets a day – I had to be placed on 24/7 intravenous drugs as an emergency when my heart began to give up. I now have a Hickman Line catheter in my chest and carry a small machine, which pumps drugs direct into my heart and pulmonary arteries. It can NEVER be disconnected and I can NEVER be late changing over the drug in my pump machine, which has to be done twice a day.

Making the drug is complex and I need help with this, so not only did I have to become competent at it before I could be discharged from hospital, so did Rob. The line and pump need quite a lot of maintenance which comes with its own set of problems; infection is always a high risk as it could go straight to my heart and lungs and into my bloodstream which could be fatal.  I have had to be admitted to hospital on a number of occasions to rule out infection; I have also spent weeks to-ing and fro-ing to both Papworth and Addenbrook hospitals when I became allergic to some of the equipment.

My medication causes a number of unwelcome side effects: headaches, nausea, stomach upsets, skin complaints, joint pains are but a few and a daily occurrence, but a small price to pay for being alive, though at times they can be extremely debilitating and be just one thing too many.

There was a point last year when my body was struggling to endure an increase in the intravenous medication and that is when the consultant told me I was being referred to the Transplant team at Papworth as she shared my concern about my ability to withstand any further increases and the IV drug is usually the final weapon that they use against PH. 

I was listed for a heart and double lung transplant a few months later and to be sat down with the Transplant Consultant putting all your cards on the table is a harrowing experience. When you get to transplant then you know you have got to the end of the line and it is the very last door to be open to you to overcome your illness. 

For PH patients, from diagnosis at least 50% survive longer than 3 years with treatment, but when we met with the Transplant team, because of the pressures in my heart, it seemed highly probable that I was looking at just 2 years life expectancy. I have now been on the transplant list for 14 months.

Being placed on the list has given me new hope as I try to deal with the daily grind of this illness and the constant hospital visits. I try to be positive about my future and try to enjoy the things that matter most to me now, but all the time there is a feeling of being in ‘no mans land’, that the illness will come back with a vengeance and it will be too late, like it has been for several of my friends, but there is a light in front of me, which is transplant and I might escape from what feels like is a hopeless situation at times.

I can only dream of waking up in a morning and feeling well; to be independent again; being able to go for a proper walk and not having to use a wheelchair; being able to travel abroad and just travel more than an hour away without having to ring the transplant team; not having to cancel one thing after another because I’m too unwell to go and Rob would be pleased if I could do some work in the garden rather than ordering him around. It would be good not to have the catheter in my chest and be able to bathe properly for the first time in years. It would be good to get some purpose back our lives rather than fighting this illness.

In the meantime, I wait in the middle, but with the chronic shortage of donors it is getting harder and harder to keep faith that all may end well.

Despite everything you have heard we actually count ourselves quite fortunate. Diagnosis of this deadly disease has happened to us during middle age, others are not so lucky; PH is just as likely to affect babies, children and young adults as it is those in later life. However, whatever your age there is always something to live for.

There will be many people of all ages and with other diseases sharing our predicament and having a similar story to tell. The fact that we are all here today proves there is a strong will to increase the number of donors signing the register.

At the moment, according to the stats 96% of people would accept an organ if they needed one, but less than 30% of these have actually signed up to the register. We can to some extent understand this complacency as it is often difficult to feel connected to major issues when you are not directly affected by them. We firmly believe that there are many people who would sign up if they were more aware of the issues somehow or if the ‘opt out’ scheme that is being discussed is brought about.

At the same time we do appreciate that organ donation can be a sensitive issue and there are both moral and religious grounds, which need to be respected too.

Tapping into the majority of people though, would not only reduce waiting times for donor organs, but would also help to address less appealing stats such as the fact that 40% of lung donors are smokers. It would also help expand the categories for urgent donation, currently there is no urgent list for people waiting for heart and lung transplants as there is for people who are waiting for heart transplants, pushing us further down the list.

It is seven days since we were asked to speak to this committee, since then 21 people like Kathryn will have died while they wait for organs. I don’t want Kathryn to become one of these statistics. Thank you for listening to us.

  

Going Back to London After Two and a Half Years

The new look King's Cross

Recently Transplant 2013 contacted my friend and fellow PHer and transplant patient, Anne, to invite her to attend the All Party Parliamentary Group for Transplantation question time on organ donation and transplantation 2013 and beyond, which was going to be held in the House of Commons. They also asked her if she knew of anyone who may speak about their illness and what life was like waiting on the Transplant List. Now there is a little group of four of us, Anne, Sita, Stacie and myself who are listed for heart and double lung transplants and have PH. Anne wasn't too sure about doing it and Stacie, the youngest and liveliest of our little four would have loved to go, she loves her politics, but she had to get to London from Swindon and she could not get the help she needed to travel that day; Sita had family commitments with a young family, so that left me, the 'oldie' in the group to volunteer.

I didn't really think about it too much as I was all fired up about the shortage of organ donors following ITV's Tonight programme about Will Pope, who desperately needs a heart when there is a chronic shortage of donors. I was feeling fed up with my long wait for transplant and thinking that it was never going to happen and something needs to be done about it. So that was that. I enlisted Rob to help me, he is very good and used to speaking to audiences and at meetings through both his job and his acting.

There would be a variety of MPs, peers, patients, clinicians and other representatives from Transplant 2013's member organisations. This is their web link, although they are still developing the website as yet:  

www.transplant2013.org.uk

View from Park Plaza

We decided we would speak together and after liaising with Transplant 2013's secretary, Vashti, it was agreed we would speak about our life before and after diagnosis of Pulmonary Hypertension and about going on and waiting on the Transplant List. It would be a good opportunity to remind everyone that amongst all the discussions, planning, organising and statistics that we transplant patients are real life people and with real illnesses. It was also an opportunity to raise a little awareness about PH and how in some cases it can lead to transplant, as so many people do not even know it exists and there would be a mixed audience here, but the real point of the exercise was to hammer home the need to keep organ donation high on the political agenda.      

We planned carefully how I was going to manage all this, with my illness I had not been into London for over two and a half years. Commuting is difficult and tiring in my condition and London is big and busy and a bit overwhelming when you feel ill. It usually involves a lot of walking and going up and down in tube stations, which is not really very manageable for me anymore; gone are the days for now where I used to commute daily to work in London, jump on and off trains and walk for miles. The meeting was at 10.30 in the morning, which is an early start for me at the best of times now.

The Atrium, Park Plaza

We planned to use my wheelchair, take the train in, use taxis and not the underground and stay in a hotel the night before so I could rest once we got there and get a head start the morning.

So after advising the Transplant Team that I would be away in London and travelling as light as possible, unknown for me with all my medication paraphernalia, Rob pushing me and my bag in my wheelchair, with a back pack on his back, we trundled along to Knebworth Station. Here we hit what we knew to be the first problem, a large flight of steps and no lift and no station attendant. Luckily, I can still use my legs and walk, so I did the steps slowly and Rob went up and down several times, lugging bags and wheelchairs. Basically if you are unable to leave your wheelchair and get out and walk and live in Knebworth, then 'the train says no' and your journey to London is curtailed at the station steps. It never ceases to amaze me what disabled people have to battle against. The train was then half an hour late and as it was freezing cold I began to struggle a bit, cold weather and wrecked lungs equals poor breathing and feeling dizzy and ill. I was relieved when the train came. As we journeyed in and I still didn't feel that brilliant, I began to question whether I was just being totally foolish even attempting to do this. I know Rob was feeling anxious for me too and I always pretend I'm ok, but he knows me too well.          

Feeling relieved once again when we got to King's Cross, my mind was taken off things as I was absolutely amazed at all the changes since I last went into London and I just really love the buzz of London. The new look station is remarkable and we were asked by staff over and over again if we needed assistance, which was a stark contrast to our local station. After a very cold wait for a taxi, I was beginning to shiver uncontrollably, we finally arrived at our hotel in Westminster. We deliberately picked the Park Plaza, which was just at the end of Westminster Bridge and a flat walk to the House of Commons that wasn't too far for Rob to push me in the morning. 

www.parkplaza.com

The hotel is a very large, busy corporate style hotel, something the size of a mini airport, not my most favourite type of hotel; yet with good, prompt and helpful service, I somehow quite liked the more impersonal atmosphere for once, as being ill nobody really notices or fusses over you and you can just get on with things at your own pace. The hotel has iconic views of Westminster Bridge, Big Ben and the Houses of Parliament. I noticed too, that we were overlooking St Thomas's Hospital, which gave me some peace of mind as I've not got the best reputation when it comes to needing a hospital!  

We didn't do much for the rest of the evening, just relaxed, rested, used room service and enjoyed the new surroundings and the superb views, anticipating the morning and relieved I had got into London in one piece. Travelling in to London had been enough for me for one day and I didn't want to tire myself out trying to go out sight seeing, although it was very tempting!     

     

A Tribute To My Dad

I am a little late posting my blog, things have been very hectic, as we got the very sad news that my dad had passed away. We have spent this last week up in South Cumbria, which is quite near my mum and also stopping with my mum in Lancashire.

Dad had been very sick with COPD and heart failure and as he had been suffering for quite some time, it was a blessing that he was able to pass away peacefully at home, where he loved to be. We were all very saddened and upset and it's felt quite a tough few weeks. We had a lovely celebration of his life at his funeral and the weather was beautiful. It couldn't have been a more bright, sunny and crisp November day after all the bleak fog, wind and rain we had been having.

My sister wrote a short poem for my dad, which my brother read out at his funeral. It sums him up completely:

Our Dad

We want to tell you about our dad

Who was kind and honest and good

He embodied the spirit of integrity

Much better than most men could.

Of course he had his faults

He could be grumpy and stubborn too

Some would say we've inherited these traits

So we've only mentioned a few!

He gave us our moral compass

To navigate life's hard tasks

Whenever we needed to know what to do

He was always there to ask.

We'll try to live up to his standards

Teach our children what he taught us three

Then they will be respected as he was

And that will be his lasting legacy

We'll remember him with love and affection

In the way our younger selves do

A gentleman who dressed with attention

Tall dark and handsome and holding a pint. 

My dad will always be loved and cherished by us all. Rest in peace now my lovely dad, you can breathe easy now.

12th July 1934 - 19th November 2012

Waiting and the Chronic Shortage of Organ Donors

This last ten days or so has been quite difficult, I seem to have been having more bad days than good with one thing or another. It started when I should have been going to to theatre with Sarah to see Rob in his plays, he had really spent a lot of time and hard work on them. I really wasn't feeling that well, but felt determined to go, but unfortunately by the time we got there and got seated I knew I really wasn't well enough to manage it, so we had to leave before it even started. I was so disappointed and frustrated. It continued into the following week with a good day here and there, followed by one bad day after another. My PH centre had suggested trying a new anti sickness drug to see if this might improve the feeling of nausea and dizziness, so I decided to give that a good try. Unfortunately the new drug, Ondansetron, was no where near as effective as my existing drug, Domperidone, so after enduring a few even worse days with it, I soon reverted back to what I've got used to dealing with, albeit it is only effective to a point.

It is weeks and days like this, when I have to keep cancelling appointments and activities with family and friends that I know the transplant cannot come fast enough and I just hope against hope that a match will come soon, then at least there will be an end to this phase of waiting and tolerating the uncertainty of how I am going to feel from one day to the next and whether I will be fit to do whatever I've planned or not. Sometimes it does feel like there isn't any point in even making plans.  At least if I can get the transplant I will feel I have attempted to try and improve things, rather than this never ending limbo of just waiting and pumping myself with drugs just to try and stay as well as this.    

Last night's ITV programme 'Tonight',  Waiting for a Heart - ITV News , discussed the issue of organ donation and highlighted the chronic shortage of donor hearts, so even people placed on the 'Urgent Heart List' are unable to get donors. Now most people have heard of organ donation and some have signed up to be donors, but most people do not understand how the 'waiting game' works and unfortunately for us patients with PH in need of a new heart as well as lungs, we fall at the very bottom of what feels like the scrap heap. This is because our lungs are not working properly so we need heart and lungs together and as it stands at the moment in this country, there is no urgent list for heart and lungs or for just lungs, there is only an urgent list for patients in need of hearts. So if a donor heart becomes available, it is firstly offered to someone on the urgent heart list and then the lungs are donated to someone on the lung transplant list, and fantastically two lives are saved. If the heart and lungs were offered to us, then only one person would be saved, so there is some logic to it in terms of firstly giving it to someone who is possibly more critical - and no one would begrudge that - then that another life will be saved as well.

For us patients needing heart and lungs, it pushes us further down the queue though, which means there is a likelihood we become too unwell for transplant while we wait. On the one hand we have good medication, which keeps us out of hospital and stabilises us for a time, but when the medication fails, there are no more options. I am lucky in that Papworth Hospital and their Transplant Team are dedicated to giving their patients whatever is the best option for survival, when some hospitals have given up on this ethos and abandoned undertaking heart and lung transplants full stop. Nevertheless, the Transplant Team have to adhere to their commitment to the urgent heart list in the first instance, but they do keep assuring me that miracles do happen and there are sometimes opportunities for a heart and lung transplant to be undertaken, so I keep waiting in hope.

It just seems a bit unfair that if things start getting a bit more critical, there is no urgent list for the heart and lung patients as well and for me, the transplant team will have to resort to a double lung transplant, which will be a much more complex operation in my case, a harder recovery and a poorer prognosis. I am lucky to have this option at least though, as for some patients waiting for heart and lungs, their heart condition means that just a lung transplant isn't an option.

We can only hope that something is done soon to increase the number of people signing up to be organ donors, currently 90% of people would accept an organ if they needed one, but only one third of these have actually signed the register. I will admit freely that I was one of these people until I needed a transplant and then I signed the register, it is difficult to feel connected to these issues when you are not affected by them and that's why the 'opt out' scheme is being brought about in Wales and currently being debated here. I firmly believe too, that if the 'opt out' scheme is brought in, then there definitely needs to be something in place for people who just do not want to be organ donors for their own personal reasons, moral reasons and on religious grounds, everybody should be respected; however, I also think there are a lot of people like I used to be, not really that aware or interested, but probably happy to help if they were actually given the forms to sign or just 'opted in' to do it.  Whatever, we urgently need to increase the organ donation register, whichever way it is done. More importantly, telling your family that that is what you wish to do is also crucial, as family refusal to donate a loved one's organs is at least 45% in the UK and the highest rate in Europe. If families are aware of their loved one's wishes, then the donor rate could be increased dramatically.

The campaigns and debates rage on and as a patient waiting for a transplant I am grateful to ITV for the programme last night promoting the issues relating to organ donation, and meanwhile those of us affected by this will do our own bit of campaigning and just keep waiting in hope.


                                                    www.organdonation.nhs.uk
       

'Tis the Season to be...........Full of Cold...

Well the flu season is on us and for anyone vulnerable because of chronic illness and old age it's time for yet another needle! The dreaded flu jab, which is offered free on the NHS, so they can try to avoid overcrowded hospitals during winter months.There always seems to be a needle lurking somewhere around the corner this month. I've had two visits to hospital for my usual routine checks with the Transplant Clinic and the Pulmonary Hypertension Clinic, where they always like to take their monies worth in blood and thank goodness all seems stable and I'm still on course for my transplant, and every month is always interspersed with frequent visits to the Warfarin Nurse to monitor my blood for clotting levels. This month there is the added treat of a flu jab. With serious lung disease it can be life threatening to contract flu or even a bad cold, as it will weaken the lungs even further when they are already struggling to work properly. Last year even an ear infection put me back in hospital for a few days as my heart struggled to cope. For someone on the transplant list this can have even more serious consequences, if you have a temperature and are fighting infections or viruses then you simply wont be fit enough to withstand the transplant operation, so if a match becomes available, you will not be the one to get the transplant. So its a bit of a mission in my life to try and avoid colds and flu and other bugs if at all possible.

So I happily went off to the doctors' surgery for my jab. Now because there are hundreds of patients needing this jab, the surgery was running special flu clinics as they do each year. Here, every available room is being used to 'jab' people and lots of extra seating is squashed into the waiting room. It doesn't really feel a very healthy place to be in, as the surgery is absolutely 'choc a bloc' with people crammed in every possible spare piece of space while they wait and I wonder if I will  be completely defeating the object of trying as hard as I can to avoid any 'lurgy' that might be going round or even get out of here alive for that matter! As I find every year since I've been having this jab, I am about twenty years younger than most people waiting and I find it really disheartening to see that a lot of the pensioners look a lot fitter than me. I've also got the added problem that I really need to sit while I wait and as I look like I'm well and probably even one of the staff there, there are people probably thinking, 'what on earth is she doing sitting there, when there are lots of elderly having to stand?'

Obviously, once I got before the nurse for my jab, I have to be asked why am I having this jab as I am not an old age pensioner. Now this year I was ready with my reply, as my friend Stacie, who also has PH and is awaiting transplant like myself, was told that as her problem was not listed on the official NHS list given to doctors, then she couldn't have the jab. It is a bit reminiscent of  the 'Computer Says No' ethos famous from Little Britain. My poor friend, who is battling all this at the young age of twenty one had to go home, after being admonished by a stroppy doctor's receptionist, and then go through all the hassle of phoning her Specialist PH Centre and the Transplant Clinic who then phoned the doctor's surgery to advise them that yes she did need the vaccine. What a waste of everyones' time and NHS resources and above all Stacie's energy and time when she is so unwell. When you feel so unwell everyday and most things are a battle then some support from staff at your local doctor's surgery is not a lot to ask for.

Fortunately, the nurse I got was brilliant and she even gave me a double whammy, advising me that I should really have the pneumonia vaccine as well, so I got a needle in both arms for good measure! Unfortunately it doesn't take a lot to knock me for six and by early evening side effects from the injections began to kick in along with two very, very sore arms, and this in its turn meant I had to cancel an evening meeting up with friends, which is something I try to avoid, but often with this illness your body does its own thing and nothing can stop it. It is so frustrating though when your body keeps letting you down.  

Chunky Veg and chicken soup with parmesan

Despite this I was glad I had had the vaccines done when Rob and Sarah both got really bad colds. Luckily, I managed to avoid catching them. I think I still have a very strong immune system, which I developed when working in school, which is great for now, but is something I worry about post transplant when they have to give you drugs to break down your immune system, I think they may need a hammer for mine after working in school for twelve years. Rob's cold was badly timed, it was at its worst when it was his opening night of the Tom Stoppard plays he was performing in at the local theatre. Anyway, Rob's bad cold and the thought of the flu season got me back into my soup making, I always think that nourishing soup, packed with fresh ingredients can only help matters, so I started with one of my winter favourites, Chunky Chicken soup. Now chicken soup is renowned for nourishing and healing and is often called 'soup of the soul'. So if you fancy a go at making it and staving off that winter flu then here goes:

Chunky Vegetable and Chicken Soup     

This makes enough for about 6 people and can be frozen

Ingredients:

a knob of butter

500g cooked chicken 

2 onions

small turnip

3 carrots

3 sticks celery

1 parsnip

25g plain flour

garlic clove or 2

1.2 -1.5 litres of chicken stock

black pepper/ salt for seasoning

Parsley/ creme fraiche/ parmesan (optional)

Preparation

melt the butter in a large pan, chop and gently heat the veg until they soften, stir in the flour for a couple of minutes,then add the stock, season to taste, bring to boil then simmer until the veg is tender(15 mins or so), add the cooked chicken and heat through, season and serve. 

with creme fraiche and parsley

Now I like to add a little variety to my soups and I made enough here for six when there are only two of us, so for one serving I added a little creme fraiche to make it a creamy flavour and another day I added fresh parsley and parmesan for a change. More tips: just use the leftover chicken from your Sunday roast; if you are tired and can't be bothered to chop and peel all the veg, just add a bag of frozen casserole vegetables instead; frozen bags of chopped onions save a lot of chopping and tears too! I never feel so bad for cheating at cooking after Delia's book 'How to Cheat at Cooking', if she does it, then so will I! Happy cooking ...    

Well, Rob managed to finish off his plays, as his cold was better by the day and I didn't catch the cold either, so perhaps that's why they call it 'soup for the soul'! No more PH and Transplant clinics for me until after Xmas if I can behave and keep as well as I am now, just the Warfarin Clinic at the Doctor's Surgery, unless I get the call that is ...   

             

The Cotswolds, Autumn 2012

Quite a few of you keep saying that as we have visited so many places and pubs in the last year, I should start writing reviews!  So I've decided to add a few reviews of pubs and places we visit from now on.

 The PH conference at Heythrop Park in Oxfordshire, in one of my previous blogs, was a highlight of our Autumn and instead of coming straight back home we travelled on to have a browse around Chipping Norton and then drove to Minster Lovell, near Witney in Oxfordshire, where we were stopping on for a couple more nights. I have had Blenheim Palace on my list of places to visit for ages now and we thought that while we were over in Oxfordshire it would be an ideal opportunity to visit. It just happened to be one of the most glorious autumn days you can imagine and as we drove into the pretty village of Minster Lovell, it actually took my breath away. It is all quintessentially very English, with pretty thatched cottages, the river Windrush meandering through it's midst and a six hundred year old inn, called the 'Old Swan and Minster Mill'.  We were staying at The Old Swan and when we got out of the car, there was the delicious aroma of wood burning coming from the pub. I couldn't really wait to check in the bags and then have an explore!

River terrace at The Old Swan

Main street, Minster Lovell

I have to say that by this point after such a busy weekend, I was completely flagging, but driven by the beautiful weather and scenery I didn't want to think I was missing anything. So we checked in and had a good old browse of the surroundings, there were lots of beautiful scenery on the doorstep to keep us both busy with our cameras.  

We had dinner in the pub, which serves generous portions of good quality food and an adventurous menu - I skipped on my starter when I saw the size of the main course - and it was a lovely intimate atmosphere, 'olde worlde' charm and roaring log fires. By the time dinner was finished I was so exhausted by the whole weekend, I could hardly walk and an early night beckoned.

Unfortunately, with PH, when you are tired its a lot worse than just tired, it's like you cross a certain threshold and then your whole body just gives up altogether. It's because your heart is working so much harder than a normal person's and just very simple tasks can be akin to a full blown zumba session and more.

When we got to our room, the beds had been turned back and there was a cosy hot water bottle, which was a lovely finishing touch, it was like they knew I wasn't well and they were making it as homely and as cosy as they could for me! This I have to say, clinched my love of this place, never mind the log fires and the beautiful food, just put me to bed with a nice hot water bottle! I'm easily pleased!

I will just add a note of caution if you find stairs difficult, as I do, there are some very tricky stairs to negotiate, as it is an old inn and has the original twisting, turning, low head height, wooden steps. Rob had to fetch all the bags in and out, without any help from me and really had to help me negotiate them.

www.oldswanandminstermill.com

Another place should you happen to visit Minster Lovell and worth a visit to, is the English Heritage place 'Minster Hall and Dovecote'. Hidden away behind the church in the village are some very picturesque ruins of a 15th century riverside manor house.




www.english-heritage.org.uk/minster-lovell-hall-and-dovecote

After a beautiful full cooked English breakfast, served in Old Swan style, the following day we set off for Blenheim Palace at Woodstock, which was about fifteen minutes drive away. We were so lucky with the weather, another glorious autumn day and as soon as you drive through the gates at Blenheim Palace you are blown away by the view over the water at this beautiful World Heritage site.

View as soon as you drive onto the Blenheim Estate, drive slowly so you don't miss it!

Blenheim Palace is an absolute treasure, the birthplace of Winston Churchill,  there is at least two days worth of things to see and more. As it was a beautiful day, we decided to concentrate on the outside and visit the palace another time to see inside. After such a busy weekend, I needed to go in my wheelchair as I had overdone things in a big way and could hardly walk and the staff at Blenheim couldn't have been more helpful.

They gave us wheelchair friendly directions and routes to take to get the best out of our visit, there are disabled loos and there is good access to the new 'take away' cafe. There are some parts of the gardens that have steep steps, so not so good, if you cannot walk at all, but on the whole I would say there were plenty of accessible places in the grounds to enjoy the visit. It does take a bit of getting around, so I would say if you struggle to walk too far, then a wheelchair or scooter is a must. 

We really enjoyed the spectacular views, architecture and gorgeous grounds of Blenheim and look forward to visiting again, so I've not quite managed to tick this one off my list yet! There is a lovely shop that is worth a browse around, we did a bit of Xmas shopping there, they had Xmas music on, which was a bit weird in October but it got me in the mood!  

It is a bit pricey to get in at £20 per adult, but if you were more able than me you could probably spend longer there and get more value for money. The good thing is once you have paid the admission fee, you can claim a pass for the whole year and come back as many times as you would like for free. So we will be going back and we will get in free - I'm always up for a good bargain!

www.blenheimpalace.com










We had another lovely evening at the Old Swan, this time I was not as tired as I had been pushed around in my wheelchair, so I was able to enjoy the evening much more, but I will concede that Mr Graham will beg to differ, he said he was 'knackered' after pushing me round all day!  We visited Woodstock town on our way home for coffee and a browse round the town and the Oxfordshire Museum at Fletchers House. Here there are some interesting artefacts and you can find out more about the local history, it's worth a browse. www.oxfordshirecotswolds.org/the-oxfordshire-museum 

This was our second visit to the Cotswolds this year, we were blessed with glorious weather and know there are still lots of things to see and do that we couldn't quite manage to fit in, so we will be back ...