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 

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 - www.theredlionwelwyn.co.uk/, which faces a beautiful woodland called Sherrardspark, which is on the edge of Welwyn Garden City www.sherrardsparkwood.com/

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: www.organdonation.nhs.uk/ 

- sign the epetition for the 'opt-out' organ donor scheme: http://epetitions.direct.gov.uk/petitions/38220 

  

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: www.organdonation.nhs.uk/  

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

 http://epetitions.direct.gov.uk/petitions/38220