Hospitals and Writing

It is twelve months this week since we lost our very dear friend Ann, who bravely fought a hard battle against very severe PH and sadly did not survive after her first few months post heart and lung transplant. We often talk about Ann and remember her with much fondness. She was such an inspirational character to us and still is. We are thinking of Anne's family and friends this week and know how difficult it will be for them. She will always be in our hearts and never forgotten. 

I was supposed to have my tests at transplant clinic this week, but they have been postponed for a few weeks. It worries me about whether my blood levels will be all right after all the stopping and starting of my medication over this last month, so I was almost looking forward to having my blood tests so I can be told all is nice and settled again. I feel fine at the moment though and back to normal again so I must learn not to worry I suppose and I know I am back at clinic in a few weeks time. 

We still weren't hospital free though. This week it was Mr Graham's turn as he had to have some routine checks, which he has every five years. We were back at the QE2 in Welwyn Garden City for the third time in a week and I'm pleased to say that all the tests were all fine. I think he rather enjoyed being the patient for once and getting all the fuss. It must be so wearing keep going to hospital all the time with me. He has to do all the sitting about usually, at least I'm up and down doing things or having things done, but he just has to sit about and wait and I think it must get so boring for him now after all this time. Next week we are hoping will be hospital and doctor free, we haven't had one of these weeks since May, so I'm keeping fingers crossed. 

I had some good news the other day too. I sent an article I had written to 'Cumbria' magazine and they emailed me back more or less straight away to say they would be able to publish it for me. It is going to be in their November issue - yes I'm finding out that all the magazines have to work a few months ahead of themselves.  My article is all about Cumbria being an inspiration to me to get myself better after my transplant, so I'm delighted they are going to publish it. It will be yet another audience to reach. I always think the more people we can reach with our real life stories about transplant, the better and hopefully there may be some positive impact. 

I treated myself to a new mac book recently so I've now made a good start on the book I'm writing about my transplant. Having the laptop means I can write wherever takes my fancy and get my thoughts down when they pop in my head! I always forget my ideas if I wait until later. It's going to take time, but now I've actually made those initial steps to get going with it I know I will need to finish it! That's my big project and it feels like quite a challenge. My writing course is also keeping me busy and getting me thinking of other writing ideas too. 

So after having to give up work and worrying what I might do with myself once I'd had my transplant and got better, I'm finding more than enough to keep me busy and enjoying myself with it in to the bargain! 

Take a Walk on the Wild Side!

Following on from my last blog and our wet and windy walk around Tarn Hows, the weather perked up for the rest of our time in Cumbria and we made the most of it, getting out and about in the sunshine. I managed to walk a good few miles each day and just enjoyed savouring all the beautiful scenery, countryside and wildlife. I had set myself a goal of trying a different walk each day for the rest of the holiday, trying to build up my fitness and strength even more. 

First stop was another of my favourite places, Arnside, on the south Cumbrian coast. We took a look all the way down the coast path, something I haven't managed for years. 

A view of the viaduct

Lonesome boat! 

Slippy rocks and mud flats - not an easy walk in your wellies! 

Thanks to my donor I was able to to manage this walk and watch the sun go down while I wandered.

We were rewarded with a most spectacular sunset

Next up, we visited Leighton Moss, RSPB reserve. This was featured in BBC's Autumnwatch last year. I visited here last summer and could barely walk round and could only manage to get to the nearest bird hide. Guess who was marching round this time and doing the whole rounds, visiting all the hides on the site? 

I could never have dreamed to walk all the way down here and back - and that was just the beginning bit! 

A few friends joined me on my travels. There are supposed to be rare birds here such as bitterns, but they didn't come out for me. Never mind, they missed me too - it was reported in the news this week that just 6 heart and lung transplants were done last year and I was one - I think that makes me a rare species too! 

A cheeky robin! 

This female pheasant decided to climb on a fallen tree and pose perfectly for the camera!

Another poser! 

On our last day we walked around Levens Deer Park. The last time I came here was just before I found out I was ill. I couldn't understand why I was so tired and had to keep stopping. When I finished the walk I almost fell in the car with complete exhaustion and had to go to bed when I got home. I thought I was just unfit! Little did I know what was to come and perhaps it was just as well! 

Here I am though, back again, well I didn't think I'd get all the way up here once more! 

Even the deer were surprised to see me! What's she doing back? 

Beautiful views.

Followed by yet another glorious sunset.

We finished our holiday with a visit to my mum's in Lancashire. We met up with my sister and her family and enjoyed a lovely Sunday afternoon catching up on all our news and being entertained by Ruby and Oliver, my niece and nephew. It's always great to see them all. We took my mum out to Skipton for the day on Monday and had a lovely walk around the town and canal paths. 

Meet Rosie and Jim! 

It was a jam-packed week, where I began to realise I am doing more and more, not only walking a lot further, but achieving a lot more in a day. When I was ill, it was a case of choosing to do one main thing in the day and that would be all I could manage; now I'm managing to be out for hours on end, not needing to rest too much unless there is a cream cake and a cup of tea beckoning! It is all very hard to believe still. 

2013 What a Busy Year!

January

Christmas 2012 was a bit scary when I was admitted back into hospital after experiencing declining symptoms in my health. I started the New Year precariously, wondering what would be in store. Would I stay well enough for transplant? Would I get my transplant? How long would this eternal wait go on for?

Still, we started the New Year as we meant to go on, with a zest for life and trying to live in the moment. With January we got lots of snow, but it didn't stop us getting out and about to keep up our spirits!

Sherrardswood Park in the snow

Snowdrops at Astonbury

A short winter walk at Rutland Water bird reserve

February

We were given lots of opportunities to promote organ donation through national TV, local TV, local radio and the local newspapers.

We had a wonderful chance to promote organ donation in the ITV 'From the Heart' campaign' 

A bit strange having a TV crew in your lounge!

And then a chance to promote organ donation in the local papers!

March

March started off with more hospital, as it was decided that my disease was deteriorating and it was time to increase my drugs to try and keep me stable. I also had a visit to the transplant clinic for my regular check up and saw the transplant team while I was hospital.

We celebrated Sarah's 21st, another big milestone for me!

Sarah turned 21, we had a family celebration in London

Exploring Westminster in my wheels!

Mother's Day

April

Still feeling quite stable in my health, we had a lovely trip to cumbria and celebrated my birthday, yet another milestone, at Kew gardens.

A trip to Cumbria, daffodils in Milnthorpe

Water lily at Kew

May

We had some lovely springtime days out including Wrest Park in Bedfordshire and a weekend in Cambridge, when we enjoyed the first burst of  promising warm sunshine.

Tulip time at Wrest Park

Sunshine and punting on the river Cam

June

Juggling around my illness, which was a little up and down, we managed to enjoy a few days in Christchurch visiting Rose down at uni in Bournemouth and more days out. I had more visits to pre transplant clinic and Ph clinic, things were still quite stable again. 

Enjoying the view of Christchurch harbour

Wisteria at Hatfield House

We had blue tits nesting in the garden

July

We went back to Dorset, staying at Sandbanks, to bring Rose back from uni, had some more lovely days out and were back on the radio again and in the local papers. Rob and Rose presented a talk on organ donation at John Henry Newman School, Stevenage.

Sunset at Sandbanks

Cambridge Botanical Gardens

Back on Jack FM following Rob and Rose's talk at John Henry Newman School

Pupils signed up to the organ donor register!

July

It was National Transplant Week and more opportunities to promote organ donation both in the local papers and on the radio again. Rob took part in the Transplant choir celebrations in Sheffield. We had a lovely afternoon tea at Papworth with Stacie and Bernice and other pre and post transplant patients and the Transplant Team The weather was fantastic and we had a fabulous week by the beach in Whitstable. We were also deeply saddened and heartbroken at the loss of our friend Ann. 

Poppy field near Cambridge

Me with Bernice and Stacie, all waiting patiently for heart and lung transplants!

The transplant choir event in Sheffield

Sunny days at Whitstable, Kent

Thoughts of our lovely friend Ann, who will always be remembered in our hearts

 August

More glorious weather and days out and a lovely break back in Cumbria!

A visit to Windsor Castle (in a wheelchair they take you to parts of the castle where others can't go!)

Highlight of my holiday in Cumbria, meeting up with my lovely friend Bente and her husband Les!

September 

Another visit to transplant clinic, things were still going relatively well. Rose took part in the Run to the Beat half marathon, raising £3137 for the PHA UK. We had another fantastic weekend in London, with some careful planning around my illness and using my wheelchair.  

Rose and David going for it!

Congratulations!

We took Rose back to university, moving her into her new house and enjoyed a couple of days back in Dorset.

Sunset over Sandbanks

Kingston Lacy

Last of summer

21st September and I had been waiting for my new heart and lungs for exactly two years and had been working towards this two year milestone since I had been listed for transplant. (I had been advised the average wait was two years.) The day came and went and I adjusted my mindset that I would now be passing the average 'wait' and my wait would carry on into the following year and beyond even. We began to plan more good things to do to try and keep positive, emotionally and mentally well and physically well and stable, while we endured the wait.  

Just after passing my two year wait for transplant I was taken back in hospital, as I experienced declining symptoms in my health yet again. I was worried the fainting symptoms were coming back again and my heart wasn't coping. I was seen by both the transplant team and my PH team. It is frightening, I wonder how long I can keep going on like this; I worry if my drugs need to be increased once more and just how much I will tolerate or even if they will keep working. The side effects of the drugs are continually dragging me down me, especially after the increase in drugs in March. 

 At the end of September we celebrated our 23rd wedding anniversary, another milestone on the calendar for me.

 The very last day of September and my life was then changed forever with one short phone call. 'Kathryn, we have a potential match for you'.

Taking that call, which came at the most unexpected of times, Monday morning rush hour!

On my way to theatre

The hardest battle I have ever fought.

October

I went into theatre in September and woke up five days later in October. At the beginning of October I fought hard for my life, by the end of October my brand new, better life was in full swing. The power of the human body and mind is amazing and the abilities of the consultants, doctors, nurses and staff at Papworth is awe inspiring. 

But I did it, I always knew I would!

Each week I got better

and better...

and better still...

Three and a half weeks later and I was formally discharged from hospital. 

November

 November saw many post transplant clinic visits, overnight stays in hospital, bronchoscopies and further tests to monitor my progress and check for both infection and rejection of my new organs. I recovered each week and made my first visit back to Lancashire and Cumbria by the end of November.  It was harder than I expected and at times I didn't feel so well, but I managed it and enjoyed myself and was so delighted I had done so. It does no harm to test what you can manage from time to time and push the boundaries! 

And so back in Cumbria once more and out with my camera again, even better...

I started getting organised with my Christmas shopping, it gave me some focus, other than the shock of my transplant and trying to recover. I wanted to be organised just in case I ended up staying back in hospital. 

December

December was soon on us and last minute Christmas preparations were done. I had chance to catch up with many of my friends and give out presents and cards, in between hospital stays and clinics.  As a family we had the most special and wonderful Christmas I will never forget. 

Before we could blink it was Christmas!

So 2013 ends today in the best possible way for me and my family. It has been a roller coaster year that will be marked in our memories forever. It is three months now since my transplant, I have felt the benefits from day one of my transplant, but now I am feeling much better than I did pre transplant and my exercise tolerance is improving by the day. I can see endless possibilities for the New Year and my hopes and dreams coming true. 

All this, is because of one very special person, my donor, and one very special family, who agreed to give the most precious gift that can ever be given or received, the gift of a new life. Do you believe in miracles? We do in our house. My new life just gets better and better...

In memory of my donor, who is with me always on my new journey in life

Wishing everyone a very happy, healthy, prosperous New Year and may it bring all your dreams and hopes!