'Life is for the Living' - One Year On

It's been a year now since my book 'Life For The Living' was first published. Writing and publishing a book was a dream come true for me and had been something I'd always wanted to do from being a small child. I think it all stemmed from my love of books and reading. As a child I would read and read and spend my pocket money on books. I've always been a bookworm I think. 

There was nothing like that feeling when the first manuscript was completed. Then followed the final redraft and editing through to designing the book cover and finally pressing that 'publish' button on Amazon. Then the boxes of newly published books arrived and I held my own book in my hands for the first time - proof that you can make a dream come true. I was actually holding my dream in my hands! 

It felt a little strange to physically download a copy of my own book on my Kindle and be able to read something that I'd written myself on there. These were big 'highs' after the hard work of writing. Writing the book through to publishing it had taken me 18 months or so, endless hours of writing and note making at all times of day and night when ideas popped in my head. I'd felt both relief and euphoria to have all those thoughts and feelings that had been swirling around in complete chaos in my head, all organised and packed into a memoir at long last. 

Then came the book launch event, again a little surreal, but a fantastic opportunity to celebrate both the book and the wonderful gift of organ donation with friends and family. It was also my first chance to sell hard copies of my book and raise funds for causes very close to my heart. I'd decided beforehand that I would donate any proceeds from the book to Papworth Hospital Charity, the PHAUK, Papworth PH Support Group and Papworth Transplant Social and Support Group. 

A group of us were in the middle of setting up the Papworth Transplant Social and Support Group and we managed to hold a raffle and receive a couple of big donations at the event to help us on our way. I hadn't really set out to fundraise, my main aim for the book had been to raise awareness of Organ Donation and Pulmonary Hypertension, but thanks to everyone's kind generosity this was a lovely surprise. 

I was thrilled to have written the book, but even more delighted as the book began to sell and I was able to make donations to the various causes I had chosen. To date I've sold over a thousand books and sales are still ongoing. The book and raising awareness of Organ Donation and Pulmonary Hypertension will always be an ongoing project. 

I was lucky to be supported by Papworth Hospital and Rob and I attended several events where we were able to talk about the book and help raise awareness. My transplant team and especially my transplant surgeon also helped me to promote it - not only did he save my life but he was now helping me in my new life! Also, I've managed to accumulate over 30 plus reviews on Amazon, mostly 5 star, which has helped immensely, as Amazon promotes books for free depending on the amount of reviews. If you've read the book and are an Amazon customer and fancy writing a review, not only may it help with sales, but it may help with raising more awareness and funds. 

The 'Chariots of Fire' event to raise funds for the DCD Heart Transplant Programme.

Raising awareness of Organ Donation and Transplant to John Henry Newman Sixth Form

Papworth Transplant Annual Patients' Event

John Henry Newman's Christmas Concert, Fundraiser and Book Event for Papworth Hospital Charity

All in all it's been a brilliant year for 'Life Is For The Living' and with profits from book sales and book events we've been able to raise over £7000 plus. The book profits to date have been shared between Papworth Hospital Charity, PHAUK, Papworth PH Matters Support Group and Papworth Transplant Social and Support Group. Book event proceeds have been donated to the Papworth Transplant Social and Support Group and Papworth Hospital Charity for the Balloon Pulmonary Angioplasty Project (Pulmonary Hypertension) and the DCD Heart Transplant Project (Transplant). 

I would like to say a massive thanks to every single one of you who have purchased and read my book and have helped spread the word about it or supported any of the book events, which has enabled this to happen. 

Here's to another successful year of raising more awareness! 

Click here to purchase book

From One Weekend to the Next

It's been a few weeks since my last post, so here's a catch up on all that's been happening over the last week or two. Life has been a little hectic with both things we've had planned and things we didn't have planned! 

A few weeks ago we had a fabulous weekend in the Lake District and visiting family in Lancashire.  One of the things I've been desperate to see is the bluebells at Rannerdale. Obviously they can only be seen for a certain few weeks in the year, while the flowers are in bloom and this year our visit was perfectly timed. It's a unique setting where English bluebells flourish on an open fell that runs down to the lake, Crummock Water. We spent most of the day in the vicinity, visiting Buttermere and driving past a variety of other Lakes on the way - Windermere, Rydal Water, Grassmere, Thirlmere, Derwent Water and Bassenthwaite - and then on through the spectacular scenery of the Forest of Borrowdale and the Honister Pass. All pretty amazing and breathtaking and always, however many times I've done this, an unforgettable experience.

Check out my garden blog for more information on Rannerdale. 

The Bluebells at Rannerdale

Honister pass taken from the car

The beautiful Buttermere

Rannerdale

Ted and me enjoying the scenery

Another day we drove through the Western Lakes, via Coniston Water, Broughton-in-Furness and the Duddon Valley and spent time walking on the beach at Silecroft and had a picnic. It was great to be outdoors all day, walking amongst views of stunning scenery and just enjoying the fresh air. Once we were back home I'd kept saying how well I feel and how it's the best I've felt in ages. 

Silecroft Beach 

Ted and me again having a little rest! 

Idling around on the west side of Coniston Water

Magnificent views

A few days later I popped up to my hospital, Papworth, to drop off a box of books so that they can stock and sell 'Life is for the Living' in the Papworth Hospital Charity's gift shop. I'm delighted at this and hope it helps raise some much needed funds. The charity is raising funds to help with the funding of organ care systems, which help facilitate the DCD donor heart programme. This programme has seriously helped to increase the number of much needed heart transplants being undertaken and is not yet fully funded by the NHS. Papworth is leading the way on this programme, being the hospital which introduced this programme in the UK and are continuing to undertake more successful transplants by this method. The programme is being rolled out to other transplant centres and Harefield Hospital are also successfully undertaking the programme too. 

I've also been up at the hospital a couple of times, as I'm in involved with the Transplant Patients' Representative Group and we've been busy planning our next support and social meeting, which is on Saturday 25th June. (Contact me for more details should you be a Papworth transplant patient and wish to attend) We will be having a talk on 'Life as a carer' and our usual buffet lunch and raffle. Also, we've been working on our new notice board in clinic, there's still more to come, so keep a look out if you happen to be visiting transplant clinic. 

Boxes ready to go to Papworth Hospital Charity Shop

Then followed the not so planned weekend, spent in hospital. We were planning a fairly quiet weekend and got up last Saturday morning quite early, as we thought we'd go out early, beat the crowds and buy some bedding plants for the garden. I hadn't been up long when I thought I felt a bit odd, then I felt ok so just carried on with breakfast. 

When you've had a transplant, you do find yourself quite tuned in to what your body is doing, especially when you have to do daily observations like weight, temperature and lung function. I try not to be obsessed, but I do find myself wondering if something is going on at every twitch, twang or ache or pain - it's like a knee jerk reaction I think,  to all the traumas of the last few years, the fact we have it drilled into us by our medical teams and the uncertainty that still lingers there somewhere. Usually in the same split second I can just dismiss it, which I did in this case.  About half an hour later though, I had the same funny feeling again and then I found myself with Rob standing over me on the kitchen floor. 

A faint is a worry for anyone, sometimes it's nothing serious, sometimes it is, but when you have transplanted heart and lungs then you can't dismiss it and wait and see. The nurse at Papworth advised to dial 999, and when we did the operator wanted to stay on the line so they could talk Rob through CPR if needed - funnily enough he'd signed up for and had CPR training at work that week. I'm not sure I can say he was stood there hoping to give it a try, but at least he had some confidence. Then the ambulance arrived. Of course, Ted was all over-excited at all the goings on and the paramedics with their bags, so Rob had to put him out in the garden while they did their initial checks. 

I had to be taken into the local hospital and after going through the resus unit and two acute assessment wards, seen by quite a few doctors - cardiologists, neurologists etc - I went on the cardiac ward to have my heart monitored for the night. They were all so fantastic with me, couldn't do too much and ran every test they could to rule things out. In the end we couldn't get to the bottom of it and on Sunday evening I was allowed home with a few follow up tests still to be done. I'm also going for a full MOT at Papworth in the next few days just to be on the safe side.

It was good to be back home and very uplifting when I received a few cards and letters in the post thanking us for donations to Papworth Hospital Charity and Papworth PH Matters Support Group. The donations were from the proceeds of my book 'Life is for the Living'. I just want to thank everyone who has purchased it, reviewed it and help spread the word about it, as it's thanks to you that I've been able to give donations to these causes that are dear to my heart. 

There's been no more blips since, but I've been mainly resting and using it all as a good excuse to read a few books and here we are again about to start a new weekend. I'm feeling back to myself again - I think - I don't know whether I should dare to say that as the last time I said I felt good...

I know this has been a long one, so if you're still reading - here's to a good weekend for everyone, make the most of the good days and enjoy them.

Here's a few pics of the cards and letters - I just wanted to share as it's also thanks to all of you for supporting my book.

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. 

St Jude's Storm

As everyone knows at the weekend it was forecast that we had a big storm coming over much of England and Wales and Hertfordshire was predicted to be right in the very midst of it all. Rob spent a bit of time on Sunday tidying garden furniture amd making things as safe as possible. 

I have made some good progress while I've been home, but we have been having a few night time struggles. One night we were up all night because I couldn't stop coughing: the swelling in my chest where the main join is to my new heart and lungs is helping to cause this and is gradually going down, so this will get much better soon, but nevertheless it is a bit of a pain from time to time until it does. Another night I went to the loo in the night after a very deep sleep, and my new heart didn't like that one bit and decided it would tell me so, a near faint: I have to remember that when an old heart is removed and a new heart is transplanted the nerves to the heart are severed. These nerves tell the body when you are moving about and without them the body has to rely on just chemical reactions, which are much slower to kick in, therefore you need to slowly warm up before you do anything to give this process time to work. So I'm drumming into myself: warm up, warm up, warm up before you move, especially when you have been laid down for hours in a deep sleep! My mistake, but I'm still learning, sometimes the hard way! The next few nights I had trouble sleeping, because I've started getting some discomfort with my chest wounds, but again, it is something to be expected and it will pass soon, so there is much light at the end of the tunnel.

So, Sunday night I went to bed with my head full of the expected storm on top of everything else. It was a quiet but restless night again with the usual problems and when we woke yet again around 5ish the storm was raging outside. We looked outside and things looked fine though, we couldn't see any damage and the big tree that is at the front of the house was still standing thank goodness and the summerhouse roof was still on! Rob made us a hot drink and it was shortly after that, that the power in the whole village went off. We had no phone signals, land line, internet or anything to find out what was going on. We had a battery powered radio, but the most local radiofor us,  which could have given news was affected too and we couldn't find out what was happening. 

Eight o'clock nebuliser time came and went, the nebuliser only works on electric, so I coouldn't take either of them to help my breathing and one of them is an important anti fungal drug, amphotericin, helping my lungs. Rob managed to get the landline working and we needed to phone Papworth anyway with a few queries, so we explained what was happening to them. I was also supposed to be at the doctors that morning, but when Rob went down to check what was going on, they had no power or phones either and all the doctors were working from the Stevenage centre and Knebworth was left in limbo. There was little else they could have done. 

Hour by hour passed and the power showed no sign of coming back on. This made me feel really vulnerable and stressed if I'm really honest. I feel very vulnerable in my present state at the moment and to not have the full security of my own home, knowing I am missing vital drug therapy and struggling to find any information whatsoever as to what was going to happen was really beginning to upset me. We also have a month's supply of my amphotericin drug, which needs to be kept in the fridge and as hours went on, the fridge temperature was slowly creeping up, so another worry. It made me realise just how vulnerable sick and elderly people are in these types of situation. 

Luckily we have fantastic friends, who came to our rescue, they happened to be in and live in a nearby village that had power, so off we went like two evacuees to their house, so we could get warm and I could take my nebulisers. Thank you Ilaine and Richard for being there for us when I was beginning to feel really stressed and upset. While we were with Richard and Ilaine, we got word from our neighbours that the power was back on. We had lifted candles, torches and the lot out ready for later, so this news was such a relief! So after being well looked after, Ilaine had made a room all warm and cosy for us and made hot tea, we set off back home with huge relief. 

When I got back, there was a most beautiful, big bouquet of gorgeous autumn flowers at the front door, sent by all the members of Papworth PH Matters Support Group. This made me cry, it was so thoughtful and kind of everyone and had arrived at a very apt moment. Again, it is all you wonderful friends, when the going feels tough, that pull me through and keep me going and now I'm sitting here nice and relaxed again. Tomorrow will be a new day! 

On the news tonight, the storm has wreaked havoc across the country and three people have lost their lives. I reckon more lives may have been lost if were not for all the warnings we were given about what was to come and the fact that many workers and commuters heeded them, despite the inconvenience. It is better to be prepared and it not happen, than not to have warning and be caught off guard and end up in a dangerous situation. 

So all's well that ends well for us, but I'm keeping that torch close by tonight as they are still fiddling, trying to get the power back on in some of the nearby villages! Let's hope they get their power back on soon, I know how stressful it can be especially if you are vulnerable in some way. 

Epoprostenol

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

Crono pump

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

All the bits, twice a day! The orange line is every other day

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

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

All the extra bits: keeping sterile, sharps bin and waste tray

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

Dressing change time

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

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

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

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

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

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

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