Tuesday, 31 December 2013

2013 What a Busy Year!


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


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 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

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


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


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


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!


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


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!


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!

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.


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 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 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! 

Sunday, 29 December 2013

Festive times

Christmas marked nearly three months since my transplant and I am feeling so much better now, which makes me appreciate even more than ever the wonderful gift of my new heart and lungs. We have enjoyed all the festivities with family and friends and it has all felt very special. I am walking much better -  further, steadier and speedier. I've been ordering everyone to speed up a bit, as they keep walking at my old slower pace - not anymore for me - once I get warmed up, I'm beginning to take off now! I can see wheelchairs and walking sticks being put in the back of a cupboard and me managing that good long walk in my walking boots coming within my grasp now!

Nothing could have prepared me for the explosion of emotions I felt on Christmas morning. I just felt shell shocked - shell shocked we had got to Christmas reasonably smoothly after the trauma of my transplant operation; shell shocked that I no longer have Pulmonary Hypertension after all this time; shell shocked I don't have to wear a pump and catheter continually; shell shocked I had actually had my long awaited transplant and, after all that waiting, that it had actually happened and I am emerging from the other side now. It was as though I couldn't quite believe we had got to this point and I'm still going forward, getting better each week, and for this I cannot thank my donor or their family enough for what they have done for me, giving me this chance of a brand new life and brand new opportunities, the chance to be really me again, to have myself back again like I used to be. 

Coupled with all these emotions were feelings of great sadness - sadness for the person, who had lost their life, which has enabled me to have a new one; sadness for the family of my donor, who will be trying to find a way through this first Christmas without their loved one, but still found the strength, in the most extenuating of circumstances, to agree to give me my gift of life. It was a very emotional day and I thought of my donor and their family throughout the day, as did Rob and the girls. I don't know how we can ever thank them for what they have done for my family, there is no greater gift that could be given or received. I truly hope that one day the family will find some comfort in that they have enabled lives to be transformed and changed for the better, because of the brave decision they have made. 

We had a few interviews with the local press about my transplant operation and to promote organ donation immediately before Christmas and Rob was on Jack FM Hertfordshire once again taking part in a live debate on the 'Opt - Out Scheme'. We were pleased to see that our story was on the front page of the Welwyn Hatfield Times and really hope it motivates people to sign up to the organ donor register. We were also in the Hertfordshire Mercury and Advertiser, so hopefully with both radio interviews and the press coverage we may have covered most of the Hertfordshire region with our campaign to get more people signing up to the organ donor register. The link to NHS Organ Donation is listed below (at the bottom of my blog), just click to sign up if you haven't already.


We had extra special news on Christmas Day, when Sarah and Oli got engaged, making Christmas even more special.  We were all so thrilled and delighted with the news and there is now so much to look forward to!  

With everything that has happened to us recently I was already in tears, so there were more tears, tears all day on and off! Tears of hope, tears of sorrow, tears of joy, tears of thankfullness, tears for a future, tears for life, tears for loss of life and loved ones. And there were toasts, toasts to loved ones we have lost, toasts to my family, toasts to the future, toasts to my donor, who is always with me now on my new journey and toasts to their family.

I have a future now, the hope for that, when all hope was dwindling as each year passed, can never be replaced. It is a treasure that I will always cherish whatever the future may hold.