A Successful National Transplant Week

I think this year's National Transplant Week has been a great success. There have been stories and news about organ donation and transplant in the papers, on the radio and on the television all week long. Hopefully they will help to raise awareness of all the issues regarding transplant and organ donation and get people thinking about it and discussing it with their families.

I think the the theme of 'spellitout' has been a really good one and believe campaigns like this are so important so people can make their own informed decisions on whether organ donation is for them or not. It is probably unlikely for families to find themselves in a position where they will need to decide whether or not to donate a loved one's organs. At least if they have had a discussion about it, then they will feel more able to make a decision on what they feel is the right thing to do for their loved one and for them as a family should they ever find themselves facing this agonising dilemma. 

It was great to take part in such an important campaign and fantastic to see how the whole 'transplant' community rallied together including donor families, transplant recipients, NHSBT and transplant hospitals. We also have to thank the press, radio and TV for so actively supporting us and my special thanks go to BBC 3 Counties Radio and the 'Weekly News' newspaper for giving me the chance to play my part. 

We finished off the week by celebrating at a special event at Papworth Hospital held especially for National Transplant Week. For me it was a celebration of having been lucky enough to receive my transplant and getting the most precious gift of my new heart and lungs. For the last two years I've attended the event as a patient on the transplant list. Last year I said to one of the nurses, who had organised the event, that I would really like it if I could come back next year having had my transplant. Well I got my wish and my dream come true thanks to my wonderful selfless donor and her generous family. 

My donor is forever part of me on my journey through life now. I've listened to several 'donor' families speak about their decision to donate this week and it has felt both heart warming and humbling to hear them talk of the comfort it has given them. I listened to one mother who really moved me when she said on the radio that she wakes up every morning and thinks of the recipients and them making the most of their new lives. This is where 'donor' families and 'recipient' families have an intangible link even though we do not know each other. Every morning when I wake up I do a very similar thing, I think of my donor and the new and transformed life they have given me. Not only have I been given the gift of a second chance at life, but they have given me the gift of knowing how delicate and precious life is. The gift of knowing I need to make every second count. 

January Bits and Pieces!

This has been a busy week with all sorts of bits and pieces going on, wedding planning being one of the main activities amongst them!

Firstly, it was back to reality and a visit to the GP to finalise which drugs my surgery will prescribe and which they won't and to also update the doctor on my changes in medication. My surgery is only able to prescribe the 'cheap' drugs and not the more expensive ones. These will come from Papworth. It is all a bit of a rigmorole, as at the end of the day it will be the same Primary Care Trust that will pay for them anyway. 

It seems to be a big lottery over drugs and who will pay for them: I've met other transplant patients whose doctors are willing to prescribe all the drugs and then others like me, who have been refused the expensive ones. According to the newspapers it seems to be a similar situation when it comes to cancer drugs and there are even reports of drugs being refused because they are seen as too expensive, although they have been approved by Nice. At least I am going to get my drugs one way or another, so I can't complain, but it seems wrong to me that there isn't just one straight forward system for all. 

We celebrated an early 'Burn's night' on Tuesday evening with haggis, tatties and neeps - we always celebrate 'Burn's night' - Rob was born in England, but his late parents were Scottish, so we like to carry on traditions! It's a quick and tasty meal, proper winter comfort food! And all washed down with a wee dram of whisky if you fancy one! 

We were recently interviewed for an article that is going to be featured in Hertfordshire Life, the article is going to be about living in Knebworth, but they had seen our transplant story in the local news and wanted to include it too, together with our views on living in Knebworth. We are always happy to try and spread the word about organ donation, so on Wednesday a photographer visited to get some pictures to go with the article. We are beginning to get used to this!  The feature will be in the March issue, which will be on sale in February. 

We have been exploring a few wedding venues this week too, for Sarah and Oli's wedding, just shopping around really to see what there is available and when and getting an idea of costs. This is all very exciting for me, and even more special in the light of my transplant. They hope to get married in spring next year and now I've had my transplant, I'm looking forward to enjoying every minute of it -  planning, preparations and all! It's a good excuse to get out and about and have a few afternoon teas - as Oli said on Saturday, after seeing a venue that didn't quite meet our needs, 'Well at least we've had a good afternoon together and enjoyed a nice afternoon tea!' It's going to be a lot of fun: I'm going to make sure of that! 

Just when we had thought we had finished with media interviews for the time being, on Friday I was asked to do another interview with the British Heart Foundation for their magazine. I was more than pleased to help with this, as it was about living with Idiopathic Pulmonary Arterial Hypertension and the importance of Professor Morrell's work and research on genetics, which aims to help develop new treatments for Pulmonary Hypertension. Hopefully the article will help raise awareness of Pulmonary Hypertension. His team were awarded a two million grant last year for this important research, which we are all hoping will lead to some targeted new therapies for PH and even a cure. 

We are still catching up with friends we haven't seen since my transplant and spent a lovely day on Saturday when friends came from Lichfield, near Birmingham to visit us. It all felt a bit surreal at times, as last time we met up was just before my transplant and now I've recovered a lot from the operation it was a bit like I had just blinked and it had never really happened! At other times I noticed how much more energy I had and how I can concentrate on conversation for longer. We are slowly managing to meet up again with many of our friends since I had my transplant and seem to have a busy calendar over the next month or so. 

After a lovely weekend, just as things feel like they are getting back to some normality after my transplant and Christmas, it's time to start packing a case ready for my next hospital visit - transplant clinic and yet another brochoscopy are looming again. Hospital always brings it home to me, the seriousness of all that has happened and reminds me that there is always some uncertainty about the future. I always begin to get worried about what they might find and why they need to keep checking my lungs over and over again. On the other hand it is always a relief to be going back as there is always something niggling - this time my never-ending cough feels worse this last few days - so it will be reassuring to be checked. It's always a massive relief to get home again and be reassured that all is going well. So I'm bracing myself ready and hoping I'll be home again fairly quickly again. 

My late father once gave me a lovely silver cross and disc engraved with a prayer called, 'The Soldier's Doxology', which had belonged to my grandfather. My grandfather wore this during the Battle of the Somme and survived it. I always keep it with my transplant bag and bring it to the hospital every time I stay in or visit. It is my lucky charm, I reckon if it worked for my grandad, then it could work for me! So far, so good, it will be coming with me yet again! 

Today I'm also sending off my first writing assignment for the writing course I've just enrolled on. I've decided it's time for some new challenges and activities now I'm getting my life back again and writing is something I can do from home and can also manage even if I feel a bit under the weather so it is a perfect choice for me. It feels good to get started on a new challenge and I am mainly doing it just for my own pleasure, but who knows where it may lead ... we will see! 

So a busy week with lots of bits and pieces going on - life seems to be getting busier and busier now, which is good news, because busier and busier means getting better and better! 

Have Yourself a Merry Little Christmas ...

The week has been a really good one. I've managed to get together and catch up with lots of friends and we also felt it was time to try and do our bit again to promote organ donation, having now had a good few weeks recovering and feeling better each week.

I'm beginning to feel like life is busying up, settling down and becoming much more normal again in many ways. As a family we are feeling full of hope that the New Year is going to be a good one - and that is one of the big differences transplant makes to your life, your hopes, dreams and expectations increase each week, instead of dwindling before your eyes as they did before transplant. My quality of life was diminishing and the odds felt like they were going against me, that is all different now.

Firstly, I had an hour or so out with the girls on Friday night, it was so lovely to see everyone and a little surprise for some, my friend Lesley had hatched a little plan for me to turn up and surprise all the others! It was great to be out and about again with friends. 

Then I met up with more friends on Tuesday, Kath and Michelle and my two favourite little girls Emily and Sophie, who I had been so looking forward to seeing after my transplant. Unfortunately, they had all been laid up with various infections, so they had to stay away for a whiile, because of the high risks I have to infection after my transplant. So it was really great to catch up at long last and see them all and enjoy the children - and lots of cake and tea! I got a beautiful rose bush for the garden to celebrate my transpant, very aptly called Joie de Vivre and a lovely little cake stand for my cup cake and we all exchanged some Christmas pressies. 

Then Wednesday it was time for another clinic visit to Papworth. This was a really good visit, after worrying that I might need more surgery, they had decided that they are going to carry on monitoring the situation and give me another bronchoscopy and a CT scan in three weeks time so they can keep a close eye on things. They are thinking there may be no need for a biopsy on my windpipe or surgery now, so we are hopeful and keeping fingers crossed I'm not going to need it. I will have my lung biopsy to check for rejection again in three weeks time too, so will be staying in hospital for a day or two. Everything else was looking fine and it was great to come home reassured again and be given three whole weeks off hospital to enjoy the Christmas festivities. 

At Papworth, I also got to meet up with a few patients who had had their transplants the same week as I had mine and it was great to see that they are all doing really well too. We also met up with Bernice, who after a long wait and being extremely poorly and hospitalised on and off for months, got her new lungs only two weeks ago. Only two weeks post transplant and she met us in the canteen for a cuppa and looked fantastic and best of all she wasn't on her oxygen! It was so good to see her and meet her lovely mum and grandad too. 

So a really good and very positive visit to Papworth on all fronts. 

The day got better, on my return home, I had a lovely visit from Rose's best friend, Lisa, she has been our daughter number three since she was about two and it was so good to hear all her university stories and exciting plans for next year. 

Rose eventually came home at the weekend, we had to delay bringing her back from Bournemouth for quite a few days because she had a sickness bug and of course it would be dangerous if I had caught it. So we had to make sure that it was quite a good few days that she had been clear of any symptoms before we could bring her home. It was hard knowing she was a long way away from home and poorly, but her housemates rallied round and looked after her until we could get her home. Rob had also come down with a bad cold the other week too and we had to take extra precautions until he was clear, so I could try to avoid it. I realised though that I was quite accepting of all this and not getting too frantic and was quite relaxed about it. If it had happened in the earlier days I know I would have completely freaked out, so I feel I've moved on a little bit from those first few weeks and I realise I'm beginning to get much more confident living with my new heart and lungs.

It's super to have Rose back and coming and going with her pals. Best news ever is that she has got a placement near home for her third year, which she had an interview for this week, so we will have her back in summer for a whole year or so. David has also got his placement for next year working in London, so will be living at home too, so we are expecting a livelier household again next year. That will be so good! I feel we are all making plans and moving on with our lives again after all the upheaval.

Thursday we had a visit from both our local radio station, Jack FM and the Welwyn Hatfield Times, our local paper, so we could help promote organ donation. It worked well, as organ donation was back in the main news, both in newspapers and on the TV, with Will Pope's and Bernice's story being revisited by ITV and national papers. I want to thank ITV so much for keeping organ donation in the news and helping us to promote the cause. I have a few close friends still waiting that awful long wait for transplant, because there is such a shortage of organ donors. I know how difficult, stressful and frightening it is to go through and live each day both waiting and hoping. 

Our Jack FM interview:

www.106jack.com/news/local-news/knebworth-transplant-patient-improving-day-by-day-after-two-year-wait-for-organs

Watch out for our newspaper article in my next blog.

We need to keep promoting that there is still a great need for more organ donors. Still only a third of people who would accept an organ if they needed one have actually signed up to the organ donor register. Only 4% of people give blood too, the rest of the population relying heavily on their generosity. When I had my transplant, I was given blood and I also needed to have blood platelets before they were able to remove the balloon pump that had been supporting my new heart. Again, I have been helped on this journey by complete strangers.

We finished Thursday off with an outing to Prezzo's for dinner with the family. Again, another lovely ordinary outing after a busy day and it felt good. Some days I'm beginning to notice that I've got much more energy than I used to have, another step in the right direction.

Friday morning and I rounded my week off with my first visit to the hairdressers since my transplant, an ordinary thing for most I know, but yet another big step for me, albeit I could only manage a dry cut, but I got there at last and feel a lot better for a good haircut! More normality! 

So apart from the Papworth bit and the newspapers, things felt much more normal and settled and already and so soon, getting so much closer to how life should be. When I first knew I was having my transplant, I had thought to myself I would be happy if I just got home for Christmas, but here I am having been home now for nearly eight weeks and life is getting so much nearer back to normal again. Now I've had another good clinic visit and been given three weeks away from hospital we are settling down to enjoy a wonderful Christmas. 

Yes, I am, pinching myself yet again...and dreaming about just what the New Year is going to bring, my life has been changed forever, starting with a phone call and then followed by a miracle, in just one day. What is that song? 'What a Difference a Day Makes - 24hrs!' All this, thanks to my donor and the selflessness of their family, they are always in my thoughts, the wonderful changes in my life wouldn't have happened if it weren't for them. 

If you can do one good thing this Christmas and you haven't already, please sign up to the organ donor register, the difference that can be made to someone's life is a miracle, the link is given below. 

As this is my last blog before Christmas, I would just like to say once again a massive thank you for all the support and kindness you have given me during this last few months, it has really helped me get this far. I wish you a happy, wonderful and peaceful Christmas and hope that you all have a healthy and happy New Year. For all those facing that long and difficult road waiting for transplant, I truly hope that 2014 is the year for you and it brings you your very special gift. 

December Already!

It's December already, I don't know where the time is flying. Another busy week has gone by, starting with a lovely Christmas party on Saturday, organised by Papworth PH Matters Support Group, just to get us all into the Christmas spirit. I had really hoped I'd be well enough to see everyone and catch up. We had a great time and got chance to meet up with old friends and meet new ones. It was especially nice to meet up with Ruth and Steve at last, after we have seemed to keep missing each other for one reason or another and to meet Esen and Omer. It was great to see everyone and, as is becoming the norm for me, I found myself pinching myself that I actually made it to the party! I don't know what it is really with all this 'pinching myself' - I guess it's trying to come back down to normal again after having gone through what feels like such a major event in my life.

Enjoying a good chat!

Now we had got ourselves in the Christmas spirit, we spent a few days gettting the house 'spring' cleaned - or should I say 'winter' cleaned - and started getting the decorations, cards and presents ready for Christmas. I love Christmas, I always have done, and like to get things ready in early December, especially the decorations then we can enjoy them all through December and get in the festive spirit for the month. I am so looking forward to Christmas this year, it is already feeling special. 

All lit up! 

I cannot get past this feeling of everything feeling so special  and that the simple and ordinary things we take for granted actually feel so wonderful. Again, I think the events of the last few months has heightened this, together with the last few years being so difficult and challenging and knowing there will still be further challenges ahead. Not least of all too, knowing that in having my transplant, another family are grieving a loved one and facing their first Christmas without them is a very difficult reality and I therefore cannot help but appreciate every minute I have been given to enjoy my life again. This reality makes it so much more poignant. I'm not sure as yet whether these feelings will ever leave me, somehow I don't think they will, I have been given too big a gift to just take life for granted ever again and in honour of my donor and their family I cannot imagine ever doing so. 

And here we go again, after yet another broncoscopy!

Wednesday and it was back to Papworth again, this time for clinic tests and a broncoscopy to check my lungs and check how things are healing. It had been nearly three weeks since I'd been and I felt ready for some reassurance that things were still going all right. It is still very early days and I am still learning to have some confidence while I'm away from the hospital. I'm hoping this will come in time, sometimes it can feel a bit frightening if I have a bad day or I can feel something a bit different to what I'm used to: they instill it in you so much what signs to look out for both infection and rejection when you first leave hospital, but I worry I may miss these signs I've been warned to look out for, especially when there is still soreness and healing from the surgery and associated symptoms, which you could easliy mistake for something else. I guess this will just get easier, especially when I have recovered from the operation properly. 

It wasn't the best of news following my bronchoscopy, it is looking like I am going to need some further surgery, due to a problem in my windpipe. I cannot say I'm surprised though, as the problem has been ongoing since my transplant, but it was difficult for the Transplant Team to see properly what was going on until the wounds from my transplant surgery had healed inside. It has been causing me lots of problems since my transplant though, so I am trying to take it in my stride and know that really the sooner it is dealt with, the better and that some of the things that have been holding me back a little may be sorted once and for all. 

At last, a proper good old shower!

Just to finish off, I managed to achieve another major step this week, something I'd been wanting, hoping and wishing for so much these last few years. My scars having healed nicely and stitches now disappeared, I stood under the shower and sang! I've been doing so ever since! In getting my transplant, all I ever wished for was just to be normal again and do some of those basic things that people do everyday and take for granted. I am happy with this ... for now...

Thinking of my very special donor

At the moment there is still a chronic shortage of organ donors, still three people in situations similiar to me die each day while they wait. During December alone, this season of Advent, this means at least 93 people in the UK will lose their lives unnecessarily. This all slips under the radar, quietly unnoticed and ignored by most, even by those who say they would actually take an organ if they needed one. If it was some big disaster that had happened where 93 people lost their lives, then there would be major public outpourings and answers demanded, but no, there is an air of complacency instead, it is just individuals and as long as it doesn't affect us then it doesn't matter is the attitude of many. So if you want to do one special thing this Christmas and haven't done so already, please sign up to the organ donor register and tell your loved ones. There is no bigger gift than the gift of life.

The Papworth PH Matters Support Group meets quarterly each year and welcomes everyone whose lives have been affected by PH. Next year's 2014 meetings are: March 22nd, June 14th, Sept 27th, Nov 29th(Xmas party). Everyone welcome. 

A Special Treat

On Friday I was given the good news that they were stopping the IV antibiotics and all my test results looked good, so if I would like to, I could try going home for the weekend. I was so excited, it felt like such a major milestone, yet I felt ready and confident to do it.

Home again, jiggety jog

Leaving Papworth and driving home in the car felt very surreal, as though it shouldn't be happening really. Once we arrived home and got inside a whole flood of emotions hit me at once and I started crying for the first time. I don't really know what for - everything - the shock and trauma of events since I left home; my donor, we had just been given some information about them that I had requested; just the fact of still being alive and standing in my own home again; it goes on ...

It was quite late, so we sorted the evening's medication and then I got an early night, that felt special too though, my own bed and next to Rob once more. 

With some of my cards and presents

The next few days were spent getting to grips with the medication. We had to run a hospital regime really, first round of drugs at 6, nebulisers at 8, a whole host of tablets with breakfast at 9, more tablets at 10 and 12. It feels quite a regime with little lull in the morning. This will get much better in time though. Things quieten down as the day goes, with just a few more nebulisers and tablets at tea and supper time. So we felt we managed this well, but compared to managing the medication I used to be on it felt a breeze. 

I need one of these at home!

I tried out things like having a bath, now that was fun! I managed to get in alright and I used my step and small bath chair I had from my Pulmonary Hypertension days. Getting out was another matter, because of my scar and injured sternum and ribs, I am unable to pull myself up like a normal person and I suddenly found I was far too low to attempt it safely. So there I was stuck in the bath thinking, 'oh no, we're going to have to phone the fire brigade to hoist me out!' Somehow in the end we managed to do it, but I will definitely need to use a higher bath stool next time. It was finding out those little simple daily things that this weekend was about though. 

I'm beginning to get some of the drug side effects too. One of the drugs, Prograf, can make you shake. I didn't think my shakes were so bad until I tried to pluck my eyebrows and had to abandon it as a dangerous mission immediately! 

A friend brought a pressie round to give to Rob for me and was stunned when I came to the door. She gave me some lovely chocolates, which I enjoyed, I've got to eat for healing, so guilt free chocolates, you can't beat that! 

In the garden (with the Michaelmas Daisies)

I enjoyed a walk around the garden. I had been waiting all autumn for a huge display of Michaelmas Daisies and thought I would miss them, but they were out at their best and I was so pleased I got to see them. Small pleasures, enjoying simple things was the weekend. 

Rob cooked a lovely roast dinner and we had a quiet afternoon before all too soon it was time to go back, which felt quite hard. Rob loaded the car and I stood and had one last, big glance at the house before we set off back to Papworth. 

The weekend went well, we are fine with the medication, I've found some things I can manage and some things I can't, but I feel confident and motivated to get home properly now and really start getting on my feet. 

When I got back to Papworth, I was still in my old room, so that felt good as I know what's what and knew I would probably get a decent sleep on my own.

Now for the next phase in my recovery.....

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. 
 
  

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:

http://www.hertfordshiremercury.co.uk/Health/Mercury-1000-campaign/Families-backing-organ-donation-campaign-20130709151429.htm

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:

http://itv.com/news/anglia/2013-07-10/appeal-to-east-of-england-during-national-transplant-week/

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: www.organdonation.nhs.uk/

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?

Precious Life, Special People and a Most Precious Gift

Our week, this week, started with some shocking news of our dear elderly neighbour being involved in a terrible car accident and it was a very stark reminder of how fragile life can be and how you can wake up one day and go about your ordinary business, but life has something very different than what you planned in store for you. It really brought home to us, yet again just how precious each day is. We are hoping and praying our friend will recover and we will be able to see her soon.

We went back to Papworth on Saturday, not for me this time, but to visit a few friends who are in hospital there.

First stop was to Mallard Ward to see Anne, who was 9 days post heart and lung transplant and making a very good recovery. She was happy, smiling and and still in shock that her transplant had actually happened. It was really good to see her and as well as laughing and smiling, we shed a tear or two! She is still recovering well and has been for a few walks outside, to the gym and is looking forward to going out for a couple of hours for Sunday lunch this weekend. So onwards and upwards Anne, hopefully she may get home sooner than she ever expected.

Next stop was Princess Ward for a quick hello and chat with Sita, who was in hospital for a procedure to sort out an ongoing problem she has been struggling with since her transplant. Sita is one of the bravest people I have ever met, when I think of all she has gone through, first with her PH, then with her heart and double lung transplants and now she is having to cope with a very difficult recovery. We are wishing her well and hoping that she can make a few steps forward to going home.

We then saw that Bernice was on Princess ward too. Bernice was on the ITV News 'From the Heart' campaign with us and we recently met her in the Transplant Continuing Care Unit. She is waiting for a heart and double lung transplant too, so we popped in to say hello to her. Again, we are wishing her well and hope she gets home soon or better still gets her call for her heart and double lung transplant.

On Monday evening around about 11 o'clock we were just going to bed when we both got a text from Stacie, saying she had got her phone call for her transplant. Stacie is a PH patient like myself and has been waiting for heart and lung transplant for over a year now. She was still waiting for the transplant team to ring her back and give her more news. Of course there was no way I was going to go to sleep until I heard more news, so I asked her to let us know any more news if she was able to. An hour later she let us know that they were sending a car for her and they would be able to let her know more once she got to hospital. So we chatted a little longer, then half an hour later her car arrived. She was on her way then, but I still couldn't get to sleep not knowing whether it was going to go ahead or not. We chatted and joked more while she went on her journey, her mum and dad following in tow and we checked we had Megan's number, Stacie's twin, as we knew Stacie would probably lose her signal once at hospital and would probably be too busy and have too much on her mind if things went ahead.

By 2 am we were dozing off back to sleep then we were awakened by my pump beeping and when I sat up I felt really unwell. In all the excitement I had drifted off to sleep with my line twisted and my drugs were not getting through. Eventually we sorted it and after I was sure I felt all right again and the drug was getting through we went back off to sleep. At 5am we got another text from Stacie to say it had ended up being a false alarm as the lungs were not in good enough condition to use for transplant.

We were so disappointed for Stacie, but she very admirably took it all in her stride. We are prepared by the Transplant Team for false alarms, for a variety of reasons, so we are very aware it may happen, but still when it does, I think it must be very difficult. Stacie was pleased though, as they told her the heart was in good condition and another life was saved that night instead. For us, well it's really encouraging to know that donor organs do become available and that those phone calls we wait so eagerly for do happen. Hopefully, for Stacie, it will be soon now she has had a practice run.

With all this transplant activity happening, it got me thinking about organ donors and their families and none of this would even be happening without them and how without their willingness to commit to organ donation there would be no options left for people like us.

When we were in the ITV campaign 'From the Heart', Rob and I came into contact with many families who's lives had been affected by organ donation and transplant. One very special person was Sally, who featured on Granada Reports during 'From the Heart' week. Sally is a mother who found herself in that dreadful position of being asked if she would say 'yes' to donating her young son, Toby's organs after he had a tragic accident whilst they were on holiday. Sally always says that the decision was an easy one, because Toby had told her that was what he would like to do should anything ever happen to him.

Since Toby's accident Sally and her husband Graham have campaigned relentlessly to raise awareness about organ donation and have also run events to raise awareness of Cystic Fibrosis, one of Toby's friends had CF and it was a cause dear to him. Toby's story is a very inspiring one for me: it helps me know that when I may get my heart and lungs, that is what the donor and their family wanted; it helps me to know that there are generous families out there who are willing to give the most precious gift of all, despite the despair they are going through. I hope Toby's mum and dad can see that not only has Toby saved several lives, but he has also given a lot of people like me and our families some inspiration and encouragement too.  
    
You can follow Sally's very moving story on her blog and take a look at the website dedicated to Toby, by clicking on the links below:

tobysgift.wordpress.com/

tobysgift.co.uk

So, this week, in a nutshell, for us, has been one of both appreciation, encouragement and inspiration. We have learned yet again how precious every day is; we have been inspired and encouraged by special friends we have seen or been in contact with, who are treading very similar journeys and we are inspired and encouraged that there are families who are willing to help us along the way.

If you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220 

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: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220