April

April, Dear April

April, dear April, I beg you come soon-

And bring your sweet primroses too.

Let them join in with the daffodils' play,

As skies offer sunshine anew. 

April, dear April, my blessed spring child,

Ornate in your yellow and white,

Teasing the birds into trilling their songs

And dancing to music of flight.

April, dear April, come enter my dreams

And rid me from cold winter chills,

Banish the rain and those blustery winds

And warm up our countryside hills.

April, dear April, I know you can't stay-

You have to move on 'till next year.

And though I shall cherish the glory of summer,

You'll always be my month most dear. 

By Mark R Slaughter

We had a very quiet and lovely family Easter and Easter Sunday was special when we had a family get together over a roast lunch cooked entirely by Rob; we dished out Easter eggs, played an entertaining game of scrabble (Oli is such a bad loser!) and generally just chilled out and relaxed. Easter Monday saw the beginning of my favourite month April. I always conjure up in my mind Easter and spring and the expectation and promise they both bring when I think of April. It's also the month when I was born making it even more special for me. Usually Easter means a holiday too for most people, whether it is the Bank Holiday Weekend or the longer school holidays and this holiday always seems the turning point for me when winter ends and spring begins. So think April; think Easter; think holidays; think birthdays; think longer days, lighter days; think gardens and flowers; think new life and new beginnings and April thoughts for me just go on and on...  

 

Daffodowndilly

She wore her yellow sun bonnet,

She wore her greenest gown,

She turned to the south wind,

And curtsied up and down.

She turned to the sunlight,

And shook her yellow head,

And whispered to her neighbour:

'Winter is dead."  

By A A  Milne

A few facts about April: April always starts on the same day of the week as July every year and January in leap years; April always ends on the same day of the week as December every year!

After my stay in hospital just before Easter, I have been doing really well and although we have had to fit in a few quick visits to the warfarin clinic and a CT scan at the local hospital, since my last blog post we have just been like any other family enjoying the Easter break, just relaxing and having a more carefree time. Rob has been tidying up the garden and I have been spring cleaning the summer house in readiness to enjoy some lighter nights and sunnier, warmer weather. We have had quite a lot of sunshine here, but we are still waiting for that cold wind to disappear once and for all now the snow has finally melted. Still with the sun out, getting outside on the garden and the lighter nights, it does feel a bit more like spring time now. 

My birthday is in April and with the spring equinox on March 21st, Aries, my star sign, is the first sign in the zodiac. We are supposed to be leaders of the pack and the first to get things going and our strengths are supposed to be initiative, courage and determination. Well I'm not sure on all of that, but I do know there are some things that I am very determined about. One is to keep as well as I possibly can in readiness for my transplant, so I'm now going to try even harder to build up my strength by keeping active and doing some very light exercise. Another, as many of you well know, is to keep on raising awareness of both Pulmonary Hypertension and the need for more awareness about organ donation. It feels a quieter time now, but my thoughts are never too far away about what we can do next.    

My birthstone is a diamond, which is supposed to give protection from severe diseases, so I guess I could always get myself a few more diamonds and see if that will help along with my medication! The ancient Romans also believed that when diamonds were worn on the left arm, next to the skin, then this would give the wearer bravery and daring, so I have now got this vision of myself being wheeled down to the operating theatre for my transplant with my left arm being draped in diamonds...

On a very serious note now though, Arians are supposed to like championing a cause, so I'm going to do just that to end this week's blog. As I write this, it has now been 562 days of waiting, which is getting rather a long time. In this time at least 1686 other patients like myself, waiting for a transplant, will have lost their lives while they have been waiting. With 1686 patients comes 1686 families and with 1686 families comes dozens of friends, so literally thousands of people are being needlessly affected because of the chronic shortage of organ donors and the general public's lack of awareness. Please, please, please encourage your families and friends to sign up if they haven't already. You can find the website is at the bottom of my blog.    

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