Wednesday, 30 January 2013

Warfarin Time

I have my next appointment with the nurse at the INR clinic next week. Now some of you wonder what INR stands for. Look it up on Wikipedia and you will find various connotations: Institute of Nuclear Research; the currency code for the Indian rupee and the Institute of National Remembrance to name but a few. In my world of Pulmonary Hypertension and the rest of the medical world it stands for 'International Normalised Ratio', which is a laboratory test measure of blood coagulation based on prothombin time. In plain language how thick your blood is and how quickly does it clot. Patients with any type of Pulmonary Hypertension are prone to blood clotting, which in itself can be catastrophic to health and life threatening and therefore many of us have to take the drug warfarin, an anti-coagulant drug, and have our INR levels monitored closely. INR levels have to be watched carefully as if your blood is too thin, it can cause internal bleeding and if your blood is too thick it can cause blood clots, both very dangerous conditions.

There are many PH patients who have developed PH because of undiscovered blood clots in their lungs and for them the importance of an INR test is paramount. Many of these PH patients are suitable for a Pulmonary Endarterectomy operation, which is a major high risk operation to clear the blood clots, but if the operation is successful it can lead to improved quality of life and increased life expectancy. Papworth Hospital in Cambridgeshire is currently the only centre in the UK that can offer this surgery. Recently this operation was featured on the 'One Show'. You can find this on YouTube, just google Pulmonary Endarterectomy and the link will come up - the link would not work in my blog unfortunately. It does not always return life to normal though for some patients and they still have PH through residual and distant clots and have to have the general and specialist PH drugs and warfarin to help them. There is more about Pulmonary Hypertension caused by blood clots and the treatment available on the PHA UK website below:

I am not in as much danger as my PH friends who have blood clots, however I am possibly prone to blood clots just by having PH. I have to have an INR measure between 2 and 3 to keep my blood thin enough so it doesn't clot, but not too thin that it poses the danger of internal bleeding. My warfarin dosage is adjusted accordingly to keep me as safe as possible from all the risks involved, hence my regular visits to the INR clinic. This INR range may vary from patient to patient depending on their condition and classification of PH. 

When you are first put on warfarin you are given a full set of instructions about your diet. Basically you need to keep your diet steady as INR levels can be affected by diet, vegetables containing vitamin K and alcohol can cause warfarin to be less effective, so whatever you are used to having, if you change things dramatically than you may put yourself in danger. For example if you have one glass of wine every now and again and then decide to drink two bottles on a Saturday night not only will you get drunk, but your INR will be out of range. Decide to have spinach for your breakfast, lunch and dinner, when you only usually have it once or twice a week, then you will put yourself in danger and drinking cranberry juice is a no no! Warfarin doesn't really inhibit your diet though once you get used to it, it is the usual thing, eat a well balanced and steady diet and all should be reasonably fine. Warfarin can also interact with other medicines, so any doctors and pharmacists that you deal with need to aware you are on it. 

I am prescribed warfarin in packets of half mg, 1mg, 3mg and 5mg and as the dose is adjusted now and again I can just make up the new dosage with this assortment I have in stock. They are colour coded so that you don't mix them up incorrectly and get them confused and accidently overdose. 

I am really grateful and lucky that I have my INR tests at my local doctor's surgery, which is just a few hundred metres away from my house. When I first started on warfarin, I had to go to my local hospital for the blood test and the pathology department was always packed and there was usually at least two  hours to wait if not longer. I obviously had to pay expensive car parking charges and needed someone to drive me and accompany me. At the time I had to do this, the hospital was undergoing refurbishment, which meant a long uphill walk from a temporary car park. This was also when my PH was at its worst and I was struggling to walk and passing out regularly. 

Many of my PH friends have to endure the struggle to and from the hospital though and have different people attending them each time they go. It seems a post code lottery as to how the system works in different parts of the country and how much very sick people are forced to endure all in the name of a blood test.  My late father, who had end stage heart and lung failure, was on permanent 24 hour oxygen to breathe and was confined to a downstairs room for the last year of his life, had to endure going to hospital every week for his INR check. He had to wait about two hours each time for the 'always late' ambulance to pick him up, wait the hours of waiting for the blood test and then wait hours again for an ambulance to take him back. Having to go through all that each week absolutely beggars belief when all it takes is a prick of your finger and a drop of blood on a slide, why on earth the nurses attending him each week at his home couldn't do it I will never know, my mum could never get a proper answer on that one. So I know I am blessed at the moment when it comes to my INR checks.

Some of my friends have gone to the expense of buying their own INR machines to save them the grind and inconvenience of extra hospital visits, but these are expensive and still need to be used in conjunction with your local warfarin clinic and GP.

So I'm lucky now and I have also had the the same lovely nurse who helps me each time I go, which is another bonus. She says I'm one of her most interesting patients as she has never had a patient with Pulmonary Hypertension before or a patient waiting for a heart and lung transplant. I think I am also about twenty years younger than most of her patients, so she enjoys a laugh and chat! Many of her patients are elderly and usually have blood clots or atrial fibrillation. 

I have to carry a little 'yellow book' and card with me at all times, so that if I ever need emergency medical attention, the medics will know that I am on anti- coagulants. 

I usually have to go every two or three weeks for my INR check, but since I was ill before Christmas, my INR range has been all over the place. First it was too high, meaning I was in danger of internal bleeding, a few days later in hospital it was too low meaning I was in danger of blood clots and then, with good timing and great inconvenience for us Knebworth warfarin patients, Christmas and New Year fell on a Tuesday our clinic day. This meant I would be struggling to get another INR check before Christmas and for the next couple of weeks to make sure I was back in the correct range again. 

My absolutely fantastic warfarin nurse, on getting the message I was in hospital phoned our home and left a message of all the times I would be able to contact her over Christmas to get an INR check done out of the usual clinic times. She only comes to our surgery once a week, but her main job is as a practice nurse in another surgery, in another town; however, she made time to to see me on Christmas Eve when her surgery at her usual doctor's was finished, so I would be safe over the festive period. She goes an extra mile every time and it is wonderful to have such strong support when something is worrying you. Bank holidays are always a big worry when you are seriously ill as that is always the time if something is going to go wrong, it will go wrong! 

Getting used to warfarin was a bit of a shock at first and tiresome, with all the blood tests at hospital and the diet worries, but with all my warfarin nurse's help and support now it's just become part of my natural routine in life.            

Just one last fact about warfarin, it is a commonly used rat poison, it was first used as a rodenticide in the 1940's, so if we ever get rats in our household, they better watch out, there are copius amounts of warfarin about! 

I would be interested to know what others have to endure with their regular INR checks and whether your stories are good ones like mine or bad like my dad's!

Join the organ donor register:

Sign the epetition for the opt-out scheme:


Friday, 25 January 2013

January Blues and Robert Burns

'Up in the morning early'

Cauld blaws the wind frae east to west,
The drift is driving sairly; 
Sae loud and shill's I hear the blast-
I'm sure it's winter fairly.

Up in the mornings no for me,
Up in the morning early;
When a' the hills are covered wi snow
I'm sure it's winter fairly.' 

    by Robert Burns

This Monday was what is now becoming traditionally known as 'Blue Monday', when everyone is supposed to be well and truly fed up with winter and summer feels a long way off still, plus all the New Year resolutions have probably been broken. For me, well it's feeling a bit dreary with the weather and it's a struggle to get up in the morning, but then again I've always struggled to get out of bed for as long as I can remember, so that's nothing new!

It seems a long time now since Christmas and as we move away from the New Year, I'm feeing really well again at the moment, therefore I've no cause to complain about January. I'm still managing to keep to my New Year's resolutions, which is to keep myself fit and strong enough for my transplant and trying to balance taking it easy and keeping busy at the same time and of course I want to keep on raising awareness of Organ Donation and Pulmonary Hypertension.  

This Monday it was also the day for my three monthly review with the Transplant Clinic, although on Sunday it looked as though we wouldn't be getting further than our own front door as the snow fell heavily all day long. Surprisingly though on Monday morning, although deserted, the roads had been cleared and we were able to make it up to Papworth.  The clinic was fairly quiet because of the snow and after all the usual tests all was fine and I don't have to go back to the Transplant Clinic again until April, unless I get the all important call that is! They are arranging a bone density scan for me, as they need to check for any signs of osteoporosis as the steroids I will be on post transplant can cause deterioration of this condition and can make me susceptible to developing it. So I expect to get another hospital appointment soon.

I am trying really hard to be as active as I can each day, so I can build up my strength and keep my muscles working well in readiness for my transplant, hopefully this may give me a better chance for an easier recovery. The physiotherapist at Papworth advised me that walking, within my limits and at a pace I can manage is the best form of exercise for me at the moment. So on Tuesday we decided to go out for lunch, then go for a walk in the woods with our cameras. Very cold weather can make me struggle to breathe if it's windy, but this day was a calm day. We went to the Red Lion pub, near Welwyn village -, which faces a beautiful woodland called Sherrardspark, which is on the edge of Welwyn Garden City

The Selkirk Grace 

'Some hae meat and canna eat,
And some wad eat that want it,
But we hae meat and we can eat,
And sae the lord be thankit'

by Robert Burns

So we had a lovely and relaxed lunch and then wrapped up warm and went for a walk in the woods, which looked beautiful with snow underfoot and snow laden trees. We then drove back through the Ayot villages, which looked very pretty in the snow.  As I write this, if you are wondering what all the poetry is about, it is Burn's night tonight, 25th January, birthday of Robert Burns the 18th century poet from Scotland. Rob, although born in England is of Scottish descent and we will be celebrating tonight with a dinner of haggis, neeps and tatties, the traditional Burn's dinner, washed down with a wee dram of whisky! Unfortunately we haven't got any pipers hiding in the cupboard to pipe the haggis in, a tradition for Burns night, so just the dinner will have to do!

'A Winter Night'

Blow , blow ye winds with heavier gust!
And freeze, thou bitter-biting frost!
Descend ye chill smothering snows!
Not all your rage, as now united, shows

by Robert Burns

In the eighteenth century when Burns was alive the concept of transplant, modern medicine and the NHS were not thought of, but back to modern day and the latest statistics from the NHSBT show that there are only eighteen people in the UK waiting for a heart and double lung transplant. That is not very many of us, but put in the context that only two of these operations have been done in the last year due to the shortage of organ donors, then you will understand that I will be one very lucky lady if I get that all important phone call. It looks very likely that I have one extremely long wait still ahead of me, during which time I need to keep well enough for transplant.

I've been waiting for my transplant for 492 days now, so that means that 1476 people will now have died while waiting for their transplant during this time too. In Burn's day, you would have had to go on horseback riding through the glens and mountains to get help and computers were unheard of, but if you wish to help, if you haven't done already, then just a simple click on the links below is all that's needed, no need to go out in the cold looking for your horse!

          -sign up to the organ donor register on: 

- sign the epetition for the 'opt-out' organ donor scheme: 


Saturday, 19 January 2013

Snow Day

This week brought the snow to many areas and Hertfordshire got a fair sprinkling of it, especially on Tuesday when it snowed heavily for most of the day. I both love and loathe the snow, I love it if I don't have to go out in it in the car and I hate it with a vengeance if I've to drive in it. So Tuesday was a lovely day with no medical appointments, no shopping required, no need to go anywhere and a beautiful snowfall to watch and enjoy.

In my days when I used to work, before PH, I used to do everything I could to try and get into work in bad weather conditions and on several occasions I've found myself completely stranded. Once I was stuck with my two young daughters in the car, I had picked them up after school and work and it took us nine hours to drive home. We were completely caught out and unprepared at rush hour and the journey home was frightening and scary as we skated up and down hills and round roundabouts. On that particular evening, mobile networks were down everywhere and we were unable to make contact with Rob and let him know we were safe. Rob managed to get all the way home on the train from Belgium in the time it took us to get from one town to the next and was relieved when we eventually returned from school at nearly midnight and driving with the petrol on red. The following year, it happened to us again, but this time we were more prepared and after being stuck in traffic for a few hours, I dumped the car at the roadside and we set off in our wellingtons on the walk home, this time we fared better, only five hours to get home!  I can think of many a hairy moment most winters after that when I have tried to skate and slide to work in the snow.

The last time I got caught out driving in the snow was three years ago, just a few months before my diagnosis of pulmonary hypertension. This time it was an evening and we were having our work Xmas party in a village pub, just a few miles near to where I live. During this period leading up to the Xmas party, and totally oblivious to being ill, I had many an evening where I felt more tired than usual and kept feeling that I was coming down with something. This evening felt like one of them and I very nearly didn't go out, but not wanting to be a misery, I decided to make an effort and go out. There was a forecast for some slight snow showers, but nothing that worried me at all. While we were in the restaurant, we could see the snow coming down heavily and blizzard like conditions developing through the window and before we got to dessert, some of us thought it may be a good idea to try and get home. I had to literally dig my car out of the snow with my hands and try and wipe the windows clean in snow that was blowing and blasting down and sideways across the nearby fields.

I decided not to go on the narrow country roads way home, which should have been the quickest, but to try and make it to the main road, which would perhaps be clearer and better lit. As I slid down a hill, there was oncoming traffic that had skidded and blocked the nearest through road. A kind gentleman, directed me to another road, which would take me to the main road, so off I went precariously slipping and sliding everywhere in my mini, not a car I would recommend for snow driving! I then found myself on some narrow kind of track in the middle of nowhere, in a blizzard and I couldn't tell which were roads or fields. It began to feel like something similar to a horror movie and I had to tell myself more than once to pull myself together and just concentrate on finding the main road! I prayed as I drove along that nothing would come the other way and miraculously it didn't. When I got to the main road, now quite a few miles in the the wrong direction I should have gone in, my car then wouldn't make it up the slight incline to get on the road.

People are always saying how strangers don't stop to help each other anymore, but two cars stopped that were passing along on the main road, and some complete strangers literally did all they could to get me up and onto the main road, giving me good advice and pushing me and my vehicle up the hill. I knew then it would still be a long walk, as I was miles further away from home, but I felt less panicky as I was on a main road and it was well lit. I will always be grateful to those people who stopped and helped me that night, especially as they were struggling too. I drove along as far as I could until I reached a bigger hill, where lots of others were stranded and the road was nearly blocked. There was a pub nearby, so I put the car on the pub car park, popped into the pub to check it was alright to leave it, remembered my walking boots were in the back of the car, as I had taken the children in my class for a walk that day, put them on and walked the few miles home in the wind and snow. I remember being so glad I had my boots in the car, the rest of my gear was evening dress and a velvet coat! I managed to get a message to the girls and as I reached the outskirts of my village, Rob and the girls were driving along to pick me up. I don't think I have ever been so relieved. Also, I didn't know the delicate state of my health at the time, so I think I was lucky I made it home all in one piece.

So those are my snow stories, I think most of us have a few of them, and I relished the thought this week that I didn't have to go out and set off to work in it! Instead I was in my PJs watching the traffic slip and slide down our road, drinking coffee and enjoying being in the warm. In the afternoon, I decided I'd like to go out for a walk in it and take some photos, everything looks so beautiful in the snow. So we donned our wellies, got wrapped up warm and went for a walk in the park before all the children came out of school, so I could be the first to walk in it! Well I just wanted to totally indulge myself, sorry kids! Enjoy the pictures!

As I finish writing this we have had lots more snow just like the rest of the country and we are expecting more snowfall tomorrow.  On Monday we are supposed to be travelling to the Transplant Clinic at Papworth for my routine check. We will have to see what tomorrow brings now and review on Monday whether we think we will be able to get there and back safely.

Today I have been waiting for 486 days for my transplant, that means  1458 people will have lost their lives waiting for a transplant too, so before you go, if you haven't already: 

 - sign up to the organ donor register on:  

  - sign the epetition for 'opt-out' organ donor scheme:

Wednesday, 16 January 2013

A Complicated Saga

My ENT specialist at the local hospital, who I've been seeing during the last year wants to double check my right ear with a MRI scan.
Oli with one of his friends (not our Xmas trout, I hasten to add!)
This 'ear' thing - and I am calling that, although I'm not sure it is an 'ear thing' - started over a year ago. I woke up one morning and when I tried to move everything was spinning and my heart rate was going at what felt like 200 miles an hour, every time I tried to move my head span and my heart went into palpitations again, so within a few minutes, thinking that my heart was now giving up and totally helpless watching me, my family rang 999.  I was taken to hospital, by which time things had begun to calm down except the dizziness and after a short stay, I came home and then was admitted for a short stay into Papworth so they could give me a thorough checking. By this time I just had a tiny bit of dizziness and after all the checking no-one could really get to the bottom of it although an inner ear disorder, mini- stroke or just my PH wasn't ruled out.

To cut a long story short I ended up going to my GP when I was left with a feeling of discomfort in my right ear and some tinnitus, indicating that it was an inner disorder after all. Eventually, when the symptoms didn't go away - and I still have them - I was referred to an ENT specialist, who after several visits to him, still can't see anything wrong with my ear, hence the MRI scan to have a look more closely and make sure it isn't something else causing it. I'm hoping and optimistically expecting they will not find anything, but at least my mind will be put at rest and I will not have to worry.

The scan will not be straightforward for me though, as it is a magnetic resonance imaging scan and I am not allowed to wear anything metal on my body. This poses a problem with my pump for my intravenous drugs that can't be disconnected and I cannot take it off during the scan, as it will be life threatening.  Papworth are therefore now involved and are liaising with my local hospital and the consultant. The specialist nurse has told me they will have to use a catheter long enough to go outside the room and because of that they will have to recalculate and alter the pump flow rate to ensure I am receiving the correct drug dosage through the lengthened catheter to keep me safe. I am hoping if I have to have this done, Papworth will do it for me , as it is going to take some skill, and the local radiography department will not have this expertise.  I am hoping they will say they can do whatever they need by CT scan and then there won't need to be all this fuss and I can get some reassurance. At the moment I am still waiting to hear news on what will happen.

Over the last few weeks and the festive period we have done lots of cooking as everyone else probably will have done and we have had a fairly quiet time, but we have had many small family get togethers as Rose was home. One of my favourite meals was on Christmas Eve, just a few days after I had come out of hospital Rob cooked a delicious gammon for the main course. He used a combination of recipes to prepare this from the BBC food website:  Rose and I had made some mince pies together earlier, just before my rush to hospital, which we had for dessert and Oli and Sarah brought some ingredients for the starter, with Oli preparing it. So it was a lovely family meal and joint effort by us all, which seemed to make it all the more special, I didn't even have to do anything as my bit had already been done earlier!

Oli's starter was a bit of a special one as he brought round a whole smoked trout, the trout he had caught himself as he is a fanatical fisherman and his friend, who owns the land where he fishes had let him use his smokehouse to smoke it for us. Oli made a delicious starter for six using about half of the trout he had prepared.

Smoked Trout and Watercress


half a medium smoked trout, half a prepared bag of watercress, half a 600ml carton of creme fraiche, lemon, horseradish sauce, 4 tablespoons of olive oil, 1 teaspoon of Dijon mustard, 2 tablespoons of lemon juice, black pepper to season


Blend together about half the carton of creme fraiche with a few teaspoons of lemon juice and add in horseradish sauce to suit taste, mix in some small strips of smoked trout and a handful of chopped pieces of watercress.  Scatter some of the watercress on each plate and spoon on some of the 'trout'  mixture in the centre. Top with flakes of smoked trout. Dress the watercress with salad dressing - Oli used one similiar to this one found on: - mix olive oil, lemon juice and mustard together - and then add a slice of lemon to the plate and season with black pepper to taste. 


You can substitute the smoked trout with smoked salmon; I used the other half of the ingredients to make a quiche on Boxing Day to go with our family's traditional 'left overs Boxing Day buffet'. I followed a James Martin  recipe (smoked salmon and watercress quiche), again found on BBC good food website, but used smoked trout instead of  smoked salmon! 

I also used the tasty stock from the ham Rob had cooked to make some tasty soup to see us over the Xmas period. I literally just added left over vegetables from the fridge: onions, carrots, leeks, parsnips and garlic and seasoning. 

Don't wait til Xmas, these are tasty recipes for any time of year! Happy cooking!

And before you go, while you are still on your computer, if you haven't already:

sign up to be an organ donor at:

sign the 'opt - out' government: epetition:  


Wednesday, 9 January 2013

New Year's Day 2013 Now 468 Days of Waiting...

Happy New Year to everyone! We are well into the new year now as I write this and as we entered News Year's day I entered my 468th day of waiting, waiting for that special phone call, waiting for my new shiny heart and lungs, waiting to feel better, waiting for my life to be changed once and for all. It is, I suppose a very special wait, so I am trying hard to be extra patient, more patient than I've ever been in my life before, patiently waiting for my gift of new life. I think there is an old saying, 'good things come to those who wait', so I am hanging on and when the time is right I firmly believe my patience will be rewarded.

Sunrise on Dalham Estate, Milnthorpe, Cumbria
After the problems with my heart that I had before Christmas, I started the new year very cautiously, dipping my toe into it, unsure whether I really wanted a new year to start, wishing I could stay in last year as I had managed quite well last year all things being weighed up. But the end of the year brought me a scare, which left me with the worry that I may be deteriorating, which is what will happen at some point, so not unexpected and I'm left feeling a little uncertain and worried about what a new year will bring.            

Anyway New Year's day is behind us now and I am well and truly back on my feet again and ready to embrace all that this year will bring. I'm optimistic that this could be the year that my life is changed and I'm determined to continue with my own personal campaign to increase the number of people on the organ donor register.

River Bela, Milnthorpe, Cumbria
For starters I will ask everyone who is a British citizen to sign the on line campaign to the government for the 'Opt-Out System'. Sadly during those 468 days of my waiting, 1404 people will have died whilst waiting for an organ. They are mums, dads, sons, daughters, brothers, sisters, husbands and wives etc. just like me and you. Remember that our government are sitting on their laurels and doing absolutely nothing at the moment to help the cause for organ donation, while three people a day die unnecessarily. Most other countries are way ahead of us with higher numbers on the organ donor register and more organs available. This country is facing a chronic shortage of organ donors, whilst our population is growing and growing. Signing the petition is as easy as apple pie to do, and you are even already on a computer or phone if you are reading this. So click on the link below, complete your name and address and sign the petition, you will then receive an email that just asks you to click on a link and hey presto it is done!

I know most of my friends and family have now signed to be organ donors and I really appreciate your support and that you have made the effort to do this, so a really big thank you to you all. Remember to tell your families though so they know your wishes. If anyone reading this would still like to sign the donor register, here is the link below, again it can be done in a quick instant from the computer or mobile you are on now:  

Thankfully, you are more likely to need an organ than have to give one. Ninety per cent  of people would take an organ, but only thirty three per cent have signed the register. If you would be prepared to take an organ to save your life then sign up now and be prepared to give! 

It seems to have been quite eventful in the transplant world over the festive period. My friend, who has had two heart and double lung transplants, is doing well and very, very slowly beginning her recovery. She has been in our thoughts and prayers and still is.

At the House of Commons, Rob and I met Sue Reid, who is Will Pope's aunt, Will was featured in the ITV 'Tonight' programme before Christmas, 'Waiting for a Heart' and his family and friends have been campaigning furiously to raise awareness of organ donation. They have a very public campaign and have been featured in the Daily Mail. Will got his much needed new heart on New Year's Eve. He is struggling at the moment and we are all hoping and praying that he pulls through. You can follow Will's story on  

Floods on Dalham Estate
Rob and I also met a lovely gentleman called Steve Gazzard while we were at the House of Commons, Steve's daughter Sarah had been waiting for a double lung transplant, but because of the chronic shortage of organs, Sarah sadly died while she waited. Sarah left behind a loving husband and three young children. Since Sarah was diagnosed Steve has launched several local campaigns to raise awareness of organ donation and he too was featured in the Daily Mail this week, you can find it on daily mail online. The article was very moving and when Steve stood up in the House of Commons to speak about his campaign and his daughter and to give his views to the All Party Parliamentary Committee, I don't think there was a dry eye in the room. 

Back to getting on with living life now, Rob and I took Rose down to Bournemouth so she could get herself ready for her new term at University. I had dithered whether to go or not, unsure about being a long way from home in case I wasn't well again. In the end I decided to throw caution to the wind, when I had one of the episodes with my heart before Christmas, I was on my own as Rob was picking Rose up from Bournemouth and I thought maybe at least I would be with someone if I went with them this time and you can still phone 999 in Bournemouth! This felt like a turning point to getting back to normal again. We had a good journey there and back again and I think its helped me in getting my confidence back to start venturing out again more now after a very quiet Christmas.  

Dalham Estate, Milnthorpe, Cumbria
As I write this, I have now been waiting 475 days, I am beginning to feel like Robinson Crusoe, but I suppose I've a long way to go to beat him, he waited 28 years to be rescued! I suppose if I could manage to wait that long, it really wouldn't matter about the transplant would it? I'd be the grand old age of 80!