Wednesday, 31 July 2013

A Peek around the Path Labs

Ever wondered, as a regular hospital patient, what they get up to with all those endless blood and tissue samples that the doctors keep taking? Well it isn't every day that you are offered a chance to have a guided tour around the pathology labs of your hospital, but then again Papworth Hospital is no ordinary hospital being a world renowned and leading heart and lung hospital. Thanks to Michelle, who runs the Papworth PH Matters Support Group and Dr Mark Southwood a post doctoral researcher at Papworth, a tour of the pathology labs was arranged for our group. I've tried my best to be accurate in my account of what I saw, but I am no scientist, so I apologise now if I've got something wrong, there was so much to learn and see and take in!

Our first stops after being welcomed was the 'Cut Up Room' and the 'Main Laboratory'. Fortunately, no, nothing gory was going on here as we all went through to our first port of call with some trepidation, hearts and lungs being chopped up kept springing into my mind! In here it was explained to us how all specimens handled are assigned a unique pathology number to keep track of them. Tissue samples are examined and dissected and placed in small cassettes, where they are bathed in a fixative ready for processing. The fixative hardens the tissue and prevents the proteins within the cells from degrading. The tissue can then be saved forever. After the tissue is hardened it is ready for the processing machine, which takes about eight hours or so to dehydrate the tissue.

Next on the tissue is embedded in hot wax to form a tissue block and then thin slices of tissue using a cutting instrument can be cut. They are then stained with Haematoxylin and Eosin and then they are ready to be examined on a slide under the microscope. We got chance to examine some tissue slides under the microscopes in the main laboratory.  I couldn't help getting the feeling after teaching primary school science for many years that here is proper, real life, exciting science going on before my eyes!

Next on the agenda was the Immunohistochemistry, Immunology  and research rooms, now we were really getting to the cutting edge of science and we got to see how relative to PH the research in these rooms was too. Sections of the tissue block are treated with antibodies to the specific proteins the researcher may want to test and the slides develop a brown colour when the designated antibody is detected and then it can be detected on the slide where the identified protein is present. We were introduced to flow cytometry, a technique for counting and examining microscopic particles such as cells and chromosones and is routinely used in the diagnosis of health disorders.

It was explained to us about all the different types of research being undertaken including using tissue banking, cell cultures and luminex analysis, all providing a spread of information relative to various diseases and research projects. There is research going on into cytokine signalling in PH and link up with Professor Nick Morrell's team at Cambridge University and the research they are undertaking there on genetics. As Papworth Hospital is a specialist heart and lung hospital, they often have referrals for their expertise from other hospitals.

We went on via the freezer and tissue store areas to the Haematology and Blood Sciences Laboratory, here we were given a talk about how they tested the blood samples and were shown the equipment they use. It was interesting to find out that this department was located at Papworth, but belonged to Addenbrookes. The Papworth site do the more routine blood tests and operate twenty four hours a day and all other blood samples are sent to Addenbrookes for analysis. As well as undertaking the blood sampling, this lab is also responsible for managing the blood stock for blood transfusions that are needed during some of the major heart and lung operations that take place at Papworth. We were shown some examples and shown how it was all stored. I couldn't help asking how much blood they would normally prepare for a major operation, having my transplant operation springing to mind, as I have already prepared and signed the forms to consent for a blood transfusion. The answer was that they usually prepare three bags of blood in readiness, but obviously it is variable.

Last but not least was an optional visit to the mortuary, I'd already decided to opt out of this one, but everything was so interesting and staff so accommodating that when it came to it, it felt like a natural close to the tour. So in for a penny, in for a pound, off we went. We were shown through the family waiting areas and into the the autopsy room. The key emphasis on this part of the tour was how staff gave their utmost respect, care and sensitivity to the deceased patients and their families.

After a busy lunch break back at the library halls, Doctor Southwood then kindly gave us a talk about the research of pulmonary hypertension. and explained in detail the types of information they have been able to gather following analysis in the labs of tissue samples taken from patients who had had Pulmonary Endarterectomy operations and transplant operations and also how this links in with the research work being undertaken by Professor Nick Morrell at Cambridge University in conjunction with all the other specialist PH centres.

All in all it was a very busy day, full of new and interesting information, it really opened my mind how all the information gathered at Papworth comes together to make a centre of expertise that also informs other hospitals and many internal and external research projects. I was also really encouraged at how much work is being done to try and find out more about our disease. Now there is no mystery surrounding what happens after our blood and tissue samples are sent for testing, it has become a tangible thing, we can put faces to the people and we have seen all the equipment, know the processes and all their stages.

On a very personal note I was most interested to hear how much the tissue sampling can help add to the bank of information held on PH and on the funny side I cannot help thinking that one of the first things I will be saying when I wake up from having my heart and lung transplant operation is, 'did you get that bucket with my old heart and lungs in across to the research team?'

I would like to thank all the staff at the pathology and haemotology labs for making us so welcome and being so helpful and all the staff who worked hard behind the scenes to prepare for our visit.

Papworth PH Matters Support Group: next meeting is Saturday 7th September in Papworth, Library Hall. Michelle has arranged for researcher Amer Rana from Cambridge University to talk to us about the latest research going on for PH. The support group makes everyone welcome and is for anyone affected by PH, patients, families and friends. You do not need to be a Papworth patient to attend. 

Thursday, 25 July 2013

Sanctuary by the Sea

Panoromic views from the beach house
Bright light in the morning
Casting a glow of sunrise over the bay
Gentle breeze, lapping waves, calm, quiet, peace of the day.

Clapper board beach house
Wooden painted floors and weather beaten, sun drenched deck
Pared back, wood stripped, bare, painted furniture
Laid back easy summer living
'Sitouteries' in sunshine and shade
Shelter from the easy sea breeze.

House by the sea
Clear blue, azure skies
High candy floss clouds
Ripples in the sky, reflecting ripples in the beach
Sea flowing and ebbing
Stripes of turquoise, blue, turqouise, blue, turqouise
Endless horizon.

Beach huts sitting pretty in the sun
Fisherman's huts vibrant with wares
Morris dancers in the square
Sunshine and jazz in the harbour cafe
Vintage, quintessential ice cream trolly
Treasure trove hunting, exploring quirky stores.

Wooden house by the beach
Sizzling hot barbeques in the heat of the day
Fresh fish from the harbour
Homebaked bread and ripened olives from the deli
Coffee shop aromas, delicious, alfresco food and drinks on the deck.

Outside refreshing deck shower
Cooling fresh swim in the heat of the day
Late noon paddles, washing cares away
A walk down the street of shingle and sand
Where waves lap your feet and gently roll to land.

Changing, swaying, simmering seascapes afront the haven house,
Blue, turqouise, grey, midnight, inky blue, sea mist swirling
Hues of amber, red and orange glowing glows of burnished gold
The earth set alight in the sunset aftermath
Black, still dark night, the earth swathed in still dark scarlet.

Candlelight in the dark still of the night
Hot, humid, calm
Cool fresh nights 
Real, crackling, sparking, warming, stoked fire
Family game of scrabble by the firelight.

Slumber to the lapping waves
Ebbing, flowing, ebbing, flowing
Sleeping, slumber, sleeping, slumber.

Clapper board beach house
Food for the soul
Peaceful, healing, peaceful, healing. 

Thursday, 18 July 2013

DonateLife Transplant Choir

A guest blog from Rob, Kath's husband, as a member of the inaugural Transplant Choir which gave its first performance on Saturday 13th July at the end of a successful National Transplant Week......

It seems to me when you are diagnosed with a serious illness you take one of three routes, you try to ignore it, you deal with it privately or you embrace it. There's no right or wrong way - it's down to each individual - but I guess we have chosen the third option as is evident from Kath's blogs. So a busy Transplant Week for us (talks, radio and TV, Papworth social) culminated in me driving up on Saturday at 6am to Yorkshire to join the Transplant Choir for its first public performance at the DonateLife concert at Sheffield City Hall. The Choir was the brainchild of Andy Eddy and Lynne Holt who are two of the trustees of Transplant Sport which supports the Transplant Games. Andy, a transplant recipient himself, is a member of the renowned Wessex Male Choir and he thought it would be novel to use the choir concept as an inspiring means to increasing organ donation awareness. So with the help of Lynne, a transplant coordinator from The Freeman in Newcastle, and Timothy Allen, an accomplished choirmaster, the idea germinated into reality on the 13th July 2013.

Drawn from the diverse Transplant community, the 60 or so strong choir was made up of adult and children recipients, donor families, those waiting on the list, specialist nurses and even a kidney transplant surgeon. Kidney, liver, pancreas, heart and lung transplants were all represented. I lost count of the number of times I was asked "so, what have you had?", but when I explained why I was there, I was still welcomed into the fold.

Andy Eddy centre

Although there had been a couple of regional rehearsals, the whole Choir had not rehearsed together at all until we assembled deep in the bowels of an acoustic unfriendly City Hall ball room at 10.30am on Saturday morning - just some nine hours before the concert commenced. As I hadn't been able to attend any of the rehearsals I had been reliant on getting to grips with the tenor harmonies, helpfully provided by Tim some weeks earlier, by practising at home. Definitely a 'Billy-no-Mates' experience. Credit to Tim for  taking on the project (probably seemed a good idea at the time, eh, Tim?) who managed to blend (mash?) together all the voices in no more than an hour and a half so the five songs we were to sing sounded half reasonable. His expectations were spot on, telling us to concentrate on enjoying ourselves as it was clear there was a vast range of abilities from the tone deaf to the semi professional and pretty much everything in between. Enthusiasm was not in short supply, however, which is probably just what you'd expect from a bunch of people who had learned to tackle adversity head on, so by the end of the technical rehearsal / sound checks in the auditorium, we were actually starting to sound like a real Choir rather than a collection of individuals.

As the concert got underway in the evening our dressing room was stifling on what was up until then the hottest day of the year, but people passed the time getting to know each other and swapping inspirational stories and planning what drink they would have in the bar afterwards and the final scene from the film Iced Cold in Alex dropped into my mind. The younger ones spent their time hunting down X Factor winner Matt Cardle whilst some of the ladies sought out Aled Jones in their dressing rooms both of whom were on the 'bill' - to be honest they were mere support acts for the Transplant Choir who were last on!

Actually we were fortunate enough to be able to sneak into some of the concert and so we had a chance to see some of the earlier acts - all with a Transplant connection, but the stand out for me was Toni Ratcliffe who sang 'Feeling Good' terrifically just a few months after her transplant - never have the words to a song sounded more poignant.
Toni and Tim

When the Choir finally came on stage at the end of a long old day, the adrenalin kicked in and it got the little ones and those who were more poorly, through the 20 min set which was delivered with unbelievable levels of passion and enthusiasm. The lyrics of the songs aptly chosen by Tim carried a very special resonance which clearly touched the audience who gave the Choir two standing ovations. Even Tim mouthed 'that was awesome' as he thumped his breastbone with his clenched fist whilst the perspiration ran down his forehead. We then had the privilege of singing 'Jerusalem' as a finale with the Wessex Male Choir. Now that sound was awesome.

The after show party was a cacophony of a hundred excitable voices having separate conversations as the Choir became a collection of individuals once again, punctuated with the ladies having their photo taken with an obliging Aled who was proving himself to be a good sport. There was also the usual adrenalin (and alcohol?) influenced resolutions to do it all again next year particularly on the back of very positive audience feedback. Andy and Tim and the team had  indeed pulled off a minor miracle and everyone was very grateful that they had 
had the vision to see it through.

Aled Jones and Lynne

Once home the following day, I started to reflect on the amazing and inspiring people I'd come across over the last couple of days (genuinely too many to mention here) with my thoughts especially turning back to the brave donor families I'd met who had consented to providing the gift of life. Without their selfless acts and those of others, some of the transplantees I had met simply wouldn't be alive, so it was a privilege to have stood shoulder to shoulder with them in the Choir. A great experience and one I will never forget.

Until next year......

Tuesday, 16 July 2013

July and Poppies

from The Poppy

Summer set lip to earth's bosom bare,
And left the flushed print in a poppy there:
Like a yawn of fire from the grass it came,
And the fanning wind puffed it to flapping flame. 

Francis Thompson (1859-1907)

We we were out and about a few weeks ago and on our way to Cambridge Botanical Gardens so we could take some pictures of the plants there when we happened to pass a beautiful field full of poppies near Harston in South Cambridge. Luckily we had the cameras with us and we felt compelled to stop and take some pictures as the field looked so stunning. We also had a lot of ornamental poppies out in the garden too, which seemed to peak at their best as we reached July this year, a bit later than usual and they looked simply beautiful. When we were in the Lake District in June we came across the most stunning blue oriental poppies at Dalemain, a historic House on the outskirts of Ullswater and at the Botanical Gardens in Cambridge there was beautiful array of Californian poppies. So we seem to have acquired quite a collection of 'poppy' pictures this year that I wanted to share.  Enjoy the poppies!

Stop the car!
Even more stunning the nearer we got!

Californian poppies at Cambridge Botanical Gardens

Himalayan poppies at Dalemain

The poppy is a flowering plant; some are ornamental grown for their colourful flowers; some varieties are used as food; other varieties produce opium which has been used since ancient times to create analgesic, medicinal and recreational drugs. Following the 1st World War which took place in the poppy fields of Flanders, red poppies have become the symbol of remembrance of soldiers who have died during war time. 

Ornamental poppy in the garden

Petals are crumpled whilst in the bud
Love the frilled petals just opened out

Friday, 12 July 2013

More on National Transplant Week July 2013

Afternoon tea in the marquee
We are now at the end of National Transplant Week 2013 and I think it has been a very successful week for raising awareness of the need for more organ donors. Rob and I managed to feature in the local Hertfordshire Mercury, which has coverage throughout a large area of Hertfordshire and hopefully the feature may have encouraged people to have the discussion with their families and sign up to be organ donors. Here is the link for the article:

Rob also tried to encourage his work colleagues to sign up too through sending a simple email; he's got at least about twenty more people signed up to be organ donors. Quite a few said that they had thought about doing so, but just hadn't got round to it, which just goes to show one little prompt and many people will sign up.  

National Transplant Week got much TV, radio and press coverage again, both local and national and it was good to see Papworth on the local Anglia news again promoting National Transplant Week, the link is below:

We were lucky to be invited to a National Transplant Week event, which was on Thursday, a gorgeous sunny day and held in a marquee in the field area that leads down to the duck pond at Papworth Hospital, where they gave us an update on what is being done nationally and what they are doing to promote organ donation and get more organ donors. It was very helpful as we got to to ask questions to the consultants and team about all aspects of transplant.

One of the main questions from our table, where three of us are waiting for heart and double lung transplants, was why there were so few heart and double lung transplants taking place - only two were done at Papworth in the last financial year -  and was anything being done to help this particular situation. The answer was that the main reason for this was the big shortage of organs and the fact that two lives could be saved instead of just one if the heart and lungs were split and even three lives could be saved if the lungs were split. So the answer is to keep on trying both nationally, locally and personally to find effective ways to increase the amount of people on the organ donor register. The more donor organs that are available, the more chance there is to get a transplant requiring three organs or a transplant of any kind.

Beautiful grounds at Papworth
There has been a lot of work to increase the number of specialist trained transplant co- ordinators in hospitals throughout the country so opportunities for the transplant process can be maximised and we are only just beginning to see the benefits from this. A major hurdle now is the lack of A & E beds, which is a big issue that needs addressing in this country and mainly not for the transplant issue. Many people are not able to be treated properly in A & E in the first place as there are not enough beds for hospital admission compared to demand and lives are being lost. This in turn impacts on the transplant process too, but needs addressing primarily to save the lives of sick people who needlessly die waiting for treatment. Not a good thing to be hearing about when you are ill with a condition that requires you to go to A & E at times.  

The Transplant Team
There are several controversial initiatives being discussed at the moment, firstly last week, the opt out system in Wales was passed and is to come into place in 2015, which has aroused much interest, because there will be presumed consent if someone doesn't agree with donating their organs, but hasn't been bothered to actually opt out. Then, this week the NHSBT, very aptly during National Transplant Week, announced their five year plan, which included considering giving people who are already registered as organ donors priority on the list and having the ability to override the families' wishes should they refuse to donate a loved one's organs when they are a registered organ donor. All pretty controversial stuff, but it has got a lot of people discussing organ donation both personally and in the media, which is a good thing for the moment whatever happens in the future. As they say all publicity good or bad is publicity and gets people talking.

If you want to sign up to the organ donor register or find out more about NHSBT's new strategy click on:

Three ladies in waiting
We had a good time at Papworth, it is always nice to be there for something other than hospital appointments or hospital stays and all the prodding and poking that goes with it! We got chance to meet up with Stacie and her twin sister Megan and Bernice joined us too and we got to chat with quite a few of the transplant staff.  We had a lovely afternoon tea and for some, a glass of champagne and the event finished with a band, where two members had had double lung transplants, which was really encouraging.
Early evening entertainment

Ever wondered what to do with a spare sharps bucket? Champagne on ice anyone?

Thursday, 4 July 2013

July and National Transplant Week 2013

It's July again and we are already nearly upon National Transplant Week, which runs during the 8th to 14th of July. I've been on the Transplant List for over 21 months now and it's beginning to feel an awful long time. Some times things feel easier, because yes I have adapted to living this way now for a very long while, but then it can feel harder as the illness doesn't get any better, has to be dealt with every day still and the hope that I had in the beginning that I will get a transplant is slowly being eroded as each day and week goes by.

For a long time I would wake up in the morning and think, 'well that's another night and day gone by without the phone call' and there would be a sinking feeling of disappointment followed by new hope that today's another day and today may be the day. I don't seem to do this any more after all this time, it's just become another day now when I wake.

I often wonder to myself, 'Am I actually on the waiting list? Did someone make a mistake and they forgot to list me? Has there been some sort of mix up?' My mind questions this all the time, 'Am I really on the system? Am I really on the list?' But I know I am on the list, I know they haven't forgotten me really, it is just the hard fact that there are so few donors available compared to so many of us who are waiting for transplant; and transplant is our only option for an improvement in our health. Waiting for three organs is a harder wait than ever.  

I recently read a book, 'Will I Still Be Me?' by Diana Sanders, who describes her journey through having a heart and double lung transplant. She describes waiting on the list as 'being in a corridor', doors all shut behind you, as there is no cure for the condition, and doors still shut in front of you until the transplant comes. My story mirrors hers in many ways. She lived in her 'corridor' for six months.

Well I suppose it does feel like being in a 'corridor' in some ways, but I've moved out of my 'corridor' now after all this time, my corridor has become something of a wilderness that I'm tramping through now. It's a hot, sandy, barren desert and there is a green oasis, and if I can just get to it, then all may be fine, but somehow every time I get nearer, it shifts again in the shimmering, dusty haze and gets further out of my reach; a mirage, always there on the horizon, but I just can't get to it. It's out of my grasp and dances before me in the dust, tempting me on, teasing me that it may change my life. But it doesn't let me catch it in my palm and leaves me lingering, languishing and lusting for what may be with my arms stretching out for it. I will catch it one day though when the time is right.

One of the hardest things in all of this is the feeling of having no control over my future and my family's future. Somehow we all feel we need to be busy and focused on other things to keep going forward and that is why as it comes to National Transplant this year, my family felt they had to do their bit and and try and raise as much awareness about both Pulmonary Hypertension and the chronic shortage of organ donors as we can. We feel we must try and do something about the situation, circumstances and world in which we now live in.

Rob is a governor at John Henry Newman Secondary School in Stevenage and he and Rose arranged to go in for the morning and talk to a group of two hundred sixth form students. The students know Rose as she only left the school last year and was Head Girl there during her final year. We were also given some fantastic resources to use from the transplant charity iLiveiGive, lots of flyers and t-shirts, which really helped us to promote our cause.

Talking about organ donation and transplant is a difficult topic to broach and Rob used real life stories of friends who we have met whilst on our transplant journey so he could bring the message home. He talked about Stacie, Bernice and myself, all waiting for new hearts and lungs; Eloise and Rhys, who have received new hearts that saved their lives; Martin, who is a living donor who donated part of his liver to save his son's Sam's life, Sam then went on to have a further transplant a few months later; Sarah, who sadly passed away while waiting for her new lungs and Toby, who was the same age as many of the students and donated his organs and saved lives after having a tragic accident. Toby had made it very clear to his parents that he wished to be an organ donor. I would just like to thank our friends for letting us use their pictures and help make Rob's presentation very real, moving and touching.

His presentation went well and over thirty students signed up straight away to the organ donor register and for the others, I think at least the seed has been planted and the importance of having a discussion with your family about organ donation, whatever your thoughts, has been brought to the fore.

Rob was also asked if he would be interested in doing another talk in another school and he had a busy week of interviews with the local newspapers and radio, in the light of both his talk at the school and National Transplant Week. So we are trying to spread the word about the shortage of organ donors as much as we can. There is a link below to his radio interview with Leona from Jack FM Hertfordshire, who are always more than too happy to help us raise awareness. His interviews with the local press will be published during National Transplant Week.

It was a good week for this to happen as transplant and organ donation hit the main news again when the 'opt out' scheme was passed in Wales. There seems to be quite a furore about it, but personally I am unable to see what the fuss is about: if you don't like it and feel really against it, then you just opt out; if you do like it, then you stay in; if you are unsure you opt out and and then opt in when you think you are ready. Nobody is forcing anybody to do anything they don't want to do. It is a known fact that 96% of the population agree with organ donation, but only 31% have signed up to the organ donor register, so hopefully more people are likely to stay opted in than opt out.

It is a just a shame though in my mind that a bill has to be passed in parliament to try and achieve this and that there is not just better national public awareness, starting in education as is done in Scotland. Countries like Scotland and Spain, despite differing national policies, have higher levels of people on the organ donor register and higher levels of family consent, because they have done a lot of groundwork in raising awareness with the general public of the issues surrounding organ donation.    

Another main issue is that of family consent and with whatever organ donation system is in place, it is of paramount importance to have a discussion with family about your wishes. You have to stop and think that if you were unfortunate enough to be in the position where your organs could be donated, your family will be in a distraught and devastated state and they really do not need to be faced with yet another difficult dilemma at that time. If they firmly know your wishes, then they are in a better place to face making a decision, whatever way.

So we have turned the wilderness of 'waiting' into keeping busy and it's been a busy week for our family in readiness for National Transplant Week and we still have more plans in hand to keep us busy and continue on our journey. Rob has joined the Transplant Choir and will be singing with them to raise more awareness at the 'Donate Life' concert in Sheffield on 13th July, Aled Jones and Matt Cardle will be headlining the concert - Rob now thinks he's up there with the stars! Rose has signed up to run the 'Run to the Beat' half marathon on Sunday 8th September. More about all that later though!

Facts and figures about Organ Donation in the UK

96% believe donating organs is the right thing to do; 4% don't believe in organ donation
70% haven't joined the organ donor register; 30% have joined the register
7500 plus people are waiting for an organ/ organs; 1000 people on average die each year waiting for an organ
Around 90% of families are supportive if the potential donor was on the NHS Organ Donor Register;
Around 40% of families agree to donation if the individual was not
96% of people would take an organ if they needed one; only 31% of people have registered to donate
By registering as an organ donor, you could save and enhance as many as 9 lives 

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