Small Steps

It's been a little while since my last blog and that's just because I've had a blip with my health again. I literally just picked up a cold to start with, but having very little immune system due to my transplant, unfortunately I wasn't able to fight it off. My transplanted lungs were already left quite fragile from the acute rejection episodes I'd experienced before Christmas, so infection took a hold in my lungs and I ended up being blue lighted to my local hospital.

Our NHS is constantly being criticised, but I have nothing but praise for the care I was given - I had the NHS at its best. I had an emergency home visit from the GP within less than an hour of phoning and was immediately ambulanced to the Lister Hospital in Stevenage. The GP, paramedics and the staff at the Lister couldn't do too much and it helped make me feel safe and secure. I was in quite a state physically, and mentally a bit more than worried about what was going on with my lungs. I already had a bronchoscopy and biopsy with my transplant team booked for the following week because my lung function had been dropping again and had never recovered back to where it had been since the rejections.

By late afternoon I'd been transferred to Papworth and was diagnosed with a severe chest infection and started on IV antibiotic treatment. Further investigations showed I'd picked up a strain of influenza too, so I was moved into isolation and given extra treatment for that. I think it's demonstrated to me just how serious infection can be with transplanted lungs and being immunosuppressed or if you are vulnerable due to other health issues or your age. I've always known it and have gone out of my way to try and avoid infection, but there is nothing like actually experiencing it to bring it home what a life threatening experience just catching a simple infection can become. 

A few weeks in hospital and now home again, it's taking small steps and time to recover. I hadn't been able to do much for myself because of my poor breathing and lack of strength and Rob automatically went into 'carer' mode yet again. It's been difficult to measure progress on a daily basis as it's slow, but over a week we can see signs of improvement that are encouraging. I've actually managed to start eating more, which will help build me up a bit I hope. My Sats have improved, although my breathing is still a struggle. I think this is very encouraging and hopefully I will feel the difference soon. It seems to take me forever but I've been able to wash, dress and bathe independently in the last few days, which again, feels like a huge step forward. 

My consultant did say this will take a few months to recover from, so it really is small steps, but I've done this before, probably many times now over this last seven years, so I am confident that if I keep on pushing myself, I will keep on progressing forwards. Hopefully things will be onwards and upwards from here. 

I'm looking forward to a quiet and relaxing Easter weekend with my family and just want to say a massive thanks for all the messages of support, love and good wishes you have sent us. It really does make a difference when things feel like they're a struggle. Wishing you all a very happy and peaceful Easter weekend. Enjoy. 

Easter Time 2015

Easter time has been warm and sunny and we spent the Easter weekend in Norfolk. We were staying  in the middle of the beautiful countryside in a small cottage, where you could just step out from your front door in your wellies and walk for miles. It is the sort of holiday Rob and I love and we had an enjoyable time just wandering around the local farmland, footpaths and country lanes, enjoying the spring sunshine and buzzing wildlife. 

We watched redwings, fieldfares and many other birds just from the front window, which overlooked a paddock of horses and out in the countryside there were deer and geese. We spotted quite a few hares hopping around too, they were camuflauged well and I haven't ever seen as many before. 

Sarah and Oli joined us for Easter Saturday and Sunday and brought Alfie their cocker spaniel puppy. We drove up to the coast a few times and Alfie had a whale of a time in the sea and enjoyed all the walking too, wherever we were! Of course there are a lot of good pubs and eateries in the area, so there were plenty of refreshments wherever we went, even a pub just a few metres from the cottage! 

On Easter Sunday I was saddened to hear of the loss of another one of my PH friends. We had been diagnosed at the same time more or less and had come across each other on the PH forum. Although we never met, we had spoken a lot to each other on the phone in those first few months and would message one another from time to time. We had been friends for nearly five years. 

My friend gave me lots of support during my transplant and we chatted quite a lot over the last week or two while she was in intensive care. It was devastating news and the PH community was shocked once again. It is a very cruel, spontaneous and agressive disease. I will miss my friend, as will many others and I'm grateful for the friendship we had. One of the best things that has come from having had this awful disease is the friendship of others and the lovely people I've met. One of the hardest is when we lose someone, which we so often sadly do. 

I'm acutely aware already how precious every day is, but once again it is a very stark reminder that life must be lived to the full and in the moment, as no one knows what the future is. I'm already aware how lucky I've been to have a new chance in life and know it cannot ever be taken for granted. It makes every moment and those we share with family and friends feel all the more precious. 

On our way back from Norfolk, we visited Ely in Cambridgeshire, again it was a glorious warm day and we enjoyed a walk by the river, through the cathedral grounds and around the town. I still stop and pinch myself that I can walk around so much now compared to when I had to use the wheel chair. It will always feel like a special gift after struggling to walk. Also, knowing that you live with delicate transplanted heart and lungs makes you appreciate all the things that you can do more than ever: you try and enjoy every moment your new lungs breathe and your new heart beats for you. 

We are coming back to Ely again in May, as we have been invited by NHSBT Eastern Region to a special remembrance and thanksgiving service at the cathedral to give thanks to those who have generously donated their organs to help people like me. I am really looking forward to that and know I wouldn't be doing all the wonderful things I'm lucky enough to do now if it wasn't for my donor. 

Easter Time

Six months or so after my heart and double lung transplant and we have reached Easter time already. It feels a poignant time yet again, as Easter signals a time of new life and new beginnings in both the religious sense and in nature, where there are signs of new life appearing all around us. Obviously it feels a significant weekend for me having been given my own chance of a new life and a new start. We have spent time in our favourite place this weekend, the Lake District, and enjoyed the spectacular scenery, glorious sunshine and relaxing in the company of family and friends.  

It was a bit stop, start as to whether we actually travelled or not - this time it wasn't the gales or rain, but my lung function. My lung function was significantly down and I had to phone the transplant team for advice. Between us, we decided it is probably due to my reduction in steroids, as it had all started to go haywire since they started to reduce them a week or two ago. All the other things that need to be checked such as temperature and weight were fine. 

As a lung transplant patient I need to check my lung function daily on a spirometry machine and if it declines more than 10% the transplant team need to be informed as it may be a sign of rejection or infection. As I've been lucky enough to escape both rejection and infection up to now, I don't really know what it should feel like, so I'm just keeping a very close eye on things and keeping in touch with the transplant nurse if I feel I need to. Unfortunately rejection and infection are part of transplant life and is always a worry in the back of your mind if you get an ache or a pain or something doesn't feel quite right. You do learn to live alongside this, but it is always there nevertheless. 

Despite the reduction in my lung function, my exercise tolerance has remained the same and I have managed to do some more beautiful walks that have been on my 'tick list' for ages. One of my aims has been to walk up to the Aira Force waterfall, just off the shores of Ullswater. This isn't a very long walk, but it is quite steep at points as you walk up the side of the river valley to the waterfall and therefore a little more challenging for me and definitely something that was out of the question for me before my transplant. I haven't tried this walk for about 6 or 7 years. We spent a lovely day on Ullswater and finished off by a stroll down the edge of Brotherswater, which is at the bottom of the Kirkstone Pass on the way home. All in all I managed to walk about five miles, including the walk up to the waterfall, so I was really chuffed about that. 

I was a little caught out with the weather, it was unexpected wall to wall sunshine and I was very conscious of the sun beating down on my face as we were out and about. This is because I am now more susceptible to skin cancer and it has been instilled in me by the transplant team to wear sunscreen, a hat and keep my skin covered up. Transplant patients are up to 100 fold more prone to skin cancers than other people, because of the immunosuppressant drugs. The risks increase each year post transplant and cardiac transplant patients rank higher risk than some other transplant patients.  Of course I had thoughtlessly come out for the day with no hat, but had luckily got makeup on, which has built in sunscreen. Aware that we were going to be out for a long time in the sun, we found a shop and I bought myself a hat. I decided it's probably always best to leave a spare hat in the car then I don't get caught out again. 

We spent a wonderful day with my mum and sister and her family and had lunch at the pub and then visited Sizergh Castle. We did an Easter egg hunt at home for Ruby, my niece, and then we kept her busy doing an Easter egg trail at Sizergh. It was lovely having her visit and enjoying her delight as she found each Easter egg. I had to laugh, as here I was walking properly again since the last time we visited Sizergh, but my sister and her husband Rob were both struggling. Jayne had sprained her ankle whilst running - she is aiming to do a charity run at some point in aid of PH and organ donation - and Rob had injured his knees in a rugby game. So here I was sprinting around the grounds of Sizergh with my little niece Ruby, while they had to keep resting on benches as we walked about. It seemed a bit bizarre after the last few years, as things were suddenly the opposite way round! 

Easter day was a very quiet and relaxing one, although the weather wasn't as good. Rob cooked a lovely roast dinner and although we had planned a walk down by the river, I decided to give it a miss as I was feeling exhausted. My post transplant cough decided to play up  - it is always there, but sometimes it is much worse than others and it was one of those days. 

I enjoyed a rest, sometimes I forget about the enormity of the operation and the time it will take to recover and I think I can keep up with everything and I also forget that even healthy people get tired and need a rest. I have to tell myself that it is actually ok to have a rest at times and not beat myself up about it! I think I am always trying to prove to myself nowadays that I am much better and back to normal, when really there is probably a way to go yet, I am just impatient to get there! 

We had a visit from friends on Easter Monday and had another lovely day out, lunch at the pub and a visit to the world famous topiary gardens at Levens Hall. I love the gardens here, I like to visit them at all times of year. They look different every time and in each season. There is also an interesting gift shop and a very nice cafe, which sells the most delicious home made cakes! 

All in all I had a wonderful first Easter since my transplant and I was certainly celebrating my own chance of a new and renewed life! 

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.    

Celebrating Easter in Photos

Daffodils, Milnthorpe, Cumbria, Easter, 2005

Wastewater, Cumbria, Easter 2006

I am looking forward to celebrating Easter with my family this weekend and still so pleased I got out of hospital in time to recover nicely ready for the holiday. Rose will be home and I can't wait to see her and have her around again. The only thing I could wish for at the moment is some of that lovely Easter sunshine we can sometimes get at this time of year. I was looking out on the garden at weekend and most of it was just a blizzard and I couldn't help but think of last March when I was enjoying the spring flowers in the garden and reading books and sunning myself up in the summerhouse. Those thoughts got me reminiscing about previous Easters we have enjoyed; we always spend some of Easter in the Lake District and sometimes we have escaped the disappointing Great British weather elsewhere. I ended up browsing through some of our old photos and this gave me a real lift and I thought I'd share some with you all, as I think we could all do with a bit of Easter sunshine to cheer us up. I don't think I'm on my own in wishing this coldest March ever is soon over with! Enjoy the photo show!

Arnside, Cumbria, Easter 2007

Warmer climes, Tenerife, Easter 2007

Athens, Easter 2008

Looking up to the Acropolis, Athens, 2008

Back to snow in Cumbria, Tarn Hows,  Easter, 2008 

Wastwater, Cumbria,  Easter 2009

Cherry Trees, Istanbul, Easter, 2009

Magnolia by the Haghia Sophia, Istanbul, Easter 2009

Mosaic in the Haghia Sophia Mosque, Istanbul (once a Christian church) Easter, 2009

Tulips in the park, near Topkapi Palace,  Istanbul, Easter 2009

Coniston Water, Cumbria, Easter 2010

River Levens, Nr Levens Hall, Cumbria, Easter, 2010

Cherry Blossom, Notre Dame, Paris, Easter 2010

Notre Dame, Paris, Easter, 2010

Glorious Blossom, Notre Dame, Paris, Easter, 2010

Cumbrian daffodils, Easter 2011

Cumbria, Easter, 2012

Windermere, Cumbria, Easter 2012

Camelia, Easter, 2012

So you can find sunshine and flowers at Easter, but sometimes it's better just to cheat if you can and escape to warmer climes! I would just like to wish all my blog readers a very happy Easter wherever you are and hope you enjoy the holiday whatever the weather. 

Easter is significant in that it symbolises new life and as I write this blog I have now been waiting for my chance of a new life for 555 days. So if you are reflecting on Easter and want to make a pledge and do a good deed, consider signing up to be an organ donor or just help us mobilise the Government into action by signing the petition to make them discuss the 'opt- out' organ donor scheme.    

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