Friday, 23 November 2012

Waiting and the Chronic Shortage of Organ Donors

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

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

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

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

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

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

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


Saturday, 17 November 2012

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

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

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

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

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

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

Chunky Vegetable and Chicken Soup     
This makes enough for about 6 people and can be frozen

a knob of butter
500g cooked chicken 
2 onions
small turnip
3 carrots
3 sticks celery
1 parsnip
25g plain flour
garlic clove or 2
1.2 -1.5 litres of chicken stock
black pepper/ salt for seasoning
Parsley/ creme fraiche/ parmesan (optional)


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

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

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


Saturday, 10 November 2012

The Cotswolds, Autumn 2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, 6 November 2012

A Year on the Transplant List

So what is it like being on the transplant list for a year? Many people have been asking me about this and especially now that I have been waiting for a long time. If you have been reading my blog so far, then you will have a feel for what it has been like, but here is a summary of my first year on the transplant list. 

Firstly and foremost another door is open for me now, should my medication begin to fail and this for starters has given me much more peace of mind to live with my PH.

Wastwater, Lake District
I expected there to be lots of dos and don’ts when I went on the list, but there are only a few. I have to inform the Transplant Team if we are going to be away from home or if I am travelling further than three quarters of an hour away and I cannot travel abroad. They need to know this so that you can be contacted at all times. I need to inform them each month on how my health is doing. The only other restriction is you are only allowed one unit of alcohol, but that is no problem for me as I had more or less given up alcohol anyway due to my illness, so you are not likely to see me getting drunk on a Saturday night!

It is also likely that I could have several false alarms, as unfortunately, sometimes when donor organs are checked, they are not healthy enough to use, so I have been prepared for this eventuality too, but so far I have been lucky and not had a false alarm. Apart from this, life can carry on pretty much as normal, with regular checks and monitoring by the Transplant Team and PH teams every three months.

In those first few days and months when you are on the 'list' you become very jumpy when the phone rings, but it doesn't take long to realise that its just usually yet another call about PPI insurance! I really have to be careful now to answer the phone politely and not to be ready to jump down someone's throat when the phone rings. I don't think it would be that good really if I were to tell the Transplant Co-ordinator 'where to get off', should that all important call come. I think one of my biggest frights was when one of Rose's friends rang in the middle of the night trying to find her in a nightclub, but I just had to laugh when I got over the shock as that is family life for you!  

Anglesey Abbey, Cambridgeshire
In those first few days, I was always worried about committing to doing things or having things done, because it might not happen if I get the call, this soon wears off, especially when you have been waiting over a year, I just try to get on with things or nothing would ever happen and life would go on hold. I always say things can be cancelled easily enough if needs be.     

When I was listed Rob decided to take a year off work to both care for me and give us some quality time together and on reflection I think this was one of the best decisions we made. We had no ties now and constraints of work that had always restricted us from doing some of the things we enjoyed. It enabled us to focus on the things that were most important to us like family and friends and concentrate on doing things I could actually do, rather than trying to do things that now were out of my reach because of my health.During my transplant assessment, I can vividly recall the Transplant Co-ordinator explaining how difficult the first year post transplant is and how if I was lucky enough to get my transplant and get through this year, then that would be the time they would say, ‘go off and do the things you really want to do.’ We laughed and talked about some of the things we would really like to do. At the same time my mind was saying I am not going to wait this long before I can try and enjoy myself. The wait was probably going to be a long one, two years or more even and there was also the possibility that my health would deteriorate again during the ‘wait’.

So we set about taking our time and focusing on enjoying life, whatever it threw at us. We couldn’t travel abroad, but luckily we live in a beautiful country and we managed to do some travelling within my limits and visit Suffolk, Norfolk, Cambridgeshire, Rutland, The Cotswolds, Oxford, Dorset and The Lake District. Some of these places we went back to several times and we saw many different places in these areas, visited museums, galleries, gardens, historic houses and tried to see all there was to see. We enjoyed staying in some lovely places and just getting out in the sunshine and taking in the views. If we didn’t go away from home, we often went out locally to visit historic houses, gardens and beauty spots and a few good pubs!

I’m passionate about gardening and although I cannot do a lot of the chores I used to, Rob helped me to make our own ‘grow your own’ part of the garden and we successfully had green beans, tomatoes, potatoes, radishes and salad, albeit the mice enjoyed some of these too! We also extended some of the borders in our garden and visited garden centres to buy interesting new plants. We are always on the look out for something new in the garden. This autumn we are busy planting more bulbs - well Rob is, I am just doing the pointing - so it will look beautiful in spring.

Silecroft, cumbria
When I used to work I always wished I had time to cook properly and experiment with new dishes and recipes, so now I’ve had my chance. I’ve really enjoyed cooking and making my own soups and having friends round to share. I want to try some baking, after avidly watching ‘the Great British Bake Off’, so watch this space!  Another thing I love, is reading and now I don’t need any excuse to rest with a good book. I’m always on the lookout for a good read and am storing lots of new books on my Kindle, there is always something new to read. I like writing too, so that's why I started my own blog.
Rob and I have managed to give our girls a lot of time too, we have been around for them while they did their A levels, more than we might have been when we worked. It has been lovely to be able to pick them up from a revision session or take them to school on an exam day. We have enjoyed many gatherings with our family, Sundays are best when we are all together and we cook a roast. We both took Rose off to university in Bournemouth this autumn and I was able to care for Sarah when she came out of hospital after she was rushed in with an appendicitus. All this would have been more difficult if we had been working. We have had many friends to visit and visited them back, its nice to see them during week days and not just weekends like it used to be. During this year I have met many new friends who have PH like myself, some of them waiting for transplants and some friends who have had transplants and the support from these friends has been invaluable and has really helped me. 

Well, for anyone having to wait this long 'wait', like myself, I can only advise that on days when you are well enough, try and enjoy the simple pleasures like being with your family and indulging yourself in things you enjoy the most; try and make plans for some nice things you can look forward to, then you're not always just thinking about the transplant ahead of you and when it may happen, but looking forward to something that is definitely going to happen soon if you are well enough. On bad days, well its important sometimes I think to just let yourself have a bad day, but try and do something positive too on a bad day, sometimes it may be only something little like finishing off a small chore or chatting to a friend you haven't contacted for a while. I also, just browse through that Transplant Folder too, from time to time, just to remind myself, so I don't go into complete shock when the call comes. I just know it will come at a time I least expect it to and like to think it helps me to be prepared, just a little.  
My year on the transplant list has given me a chance to take stock of things and learn to live with my PH, my life is full again now, but different than before; I’ve had chance to do some of the things I always wished I had more time for and the things that matter; I’ve had chance to store up some precious memories, improve my well being and get ready for that ‘phone call’ when it comes. Life has moved on for all of us and is steady again, Rob has now gone back to work part time, Rose has finished her A levels and gone off to University and Sarah has just started a new job and completed her first year of open University.      

We have said a few times and it may sound strange, ‘that life has never been better’ and in some ways this is very true. But always open to a new challenge, well I think we are just about ready for the call now, but if it doesn’t come we have plenty of plans to keep us busy and Christmas is looming …