Wednesday, 24 December 2014

Merry Christmas!

I just want to wish everyone a very happy and peaceful Christmas and hope that the New Year brings you health, happiness and is the year you can make some of your dreams come true. 

I'm especially hoping my PH and transplant friends can remain in stable health and those waiting for transplants, that their calls will come very soon then they can start rebuilding their lives once more.

I know I've been truly blessed to have been given my life back this year and see my health get better and better and also to have been given some wonderful opportunities to experience new things, new places and new directions in life.

As a family we are forever grateful to the teams at Papworth Hospital, who have worked so hard over the years and still do to keep me well and we are forever grateful to my donor and their family for giving me this brilliant, amazing and most memorable year.

We have finished the year on a really big high, we made a dream of ours come true and flew out to see New York at Christmas time. It was a truly magical experience and all the more special because I didn't ever believe I would even fly in an aeroplane again, let alone do a long haul flight to somewhere we had always dreamed we may go together one day.

It felt like a big step to make, but we had a fabulous time and walked for miles so we could see everything there was to see; we Christmas shopped until we nearly dropped and pinched ourselves over and over again. In fact, we are still pinching ourselves...

As always my donor wasn't ever far away from our thoughts, as it was all because of her that we were able to enjoy the many special moments that we shared together, moments we believed we would never have and seemed beyond our wildest dreams...

Now it is Christmas Eve and time to enjoy the festivities.

Merry Christmas everyone! 

While I was in New York, NHSBT launched their Christmas campaign to raise more awareness of transplant and organ donation: I was fortunate enough to take part in this by doing a couple of press and radio interviews beforehand. My three Christmas wishes were: 

1. That there isn't such a shortage of organ donors
2. That everyone waiting for transplants could be as lucky as I have been and get a successful transplant
3. To go Christmas shopping in New York

One of those wishes has come true, so I'm hoping that 2015 will bring the rest. Please think of signing up to the organ donation register and click on the link below this blog. 

Christmas campaign 2014: 

Saturday, 13 December 2014

Show Love Today

My friend Terry, who has had a heart transplant, has made a track called 'Show Love Today' with his band, The Street and Mark Moraghan. He has done it to help raise funds for the British Heart Foundation and to raise awareness of organ donation. He has also managed to get the support of all the Coronation Street cast in the process too!

Coronation St is currently running a story featuring Les Dennis, who plays Michael - Gail's boyfriend. Michael has been struck down with a genetic heart condition. The British Heart Foundation are currently funding much work on genetic causes of heart disease. They gave funding to help the genetic research currently being undertaken by Professor Morrell, at the Cambridge Centre of Research Excellence, on the genetics of Pulmonary Hypertension, so the BHF's research is something close to my heart.

To watch the video and listen to the track click on the link below: it features Terry, myself and some of my transplant friends - some of those we have lost while they waited on the list; some of us who have been lucky enough to receive a transplant and have our lives changed dramatically and those who are still waiting. 

We chose this picture for my picture in the video, as it just about sums up what transplant can do to transform someone's life - from using a wheelchair to kayaking once more, something I thought I would never do again! This moment was one of the highlights of my year post transplant!

There are still 3 people a day dying while they wait for a transplant, so come on, 'Show Love Today' and sign up to the organ donor register. Click below to order the track and support BHF: 

The link to sign up to the register is listed below. 

A Family Christmas

Christmas is around the corner and we are all ready more or less: presents wrapped, cards written and posted and house decorated both inside and out. It has got me thinking about last Christmas, just a few months following my transplant. I'm constantly being asked what was it like that first Christmas post transplant? This was how it was, that first Christmas morning...

I wake and there are tears in my eyes. It is still dark and I lie quietly while I pinch myself and absorb what has happened. It is Christmas morning. Another milestone has been reached. I’m still shocked.

I had hoped for this day. Hope. It can take you a long way on a journey into the unknown.

I’d arrived at my destination. Christmas. A normal loving family Christmas. The realisation dawned. It had been a hard route. Rob, my husband stirs and we wish each other Merry Christmas, we wander downstairs and put on the Christmas lights: festive white lights twinkling inside and out. Everything is ready. Tears slide gently down my face. I knew it would be emotional. I hold them back, but they cannot be contained – they trickle softly like snowflakes falling from a laden sky – they keep coming.  It is bittersweet.

Everything is ready. Stockings bursting: gifts waiting patiently underneath the tree. It’s a real Christmas tree – it’s family tradition.  Collections of Christmas trinkets and decorations gathered over many years and from many places have been lovingly placed around the house.

Rose appears downstairs, it’s 8am, late in comparison to years past, but she is grown now – not our excited young child anymore, but still excited, as we anticipate Christmas. We breakfast to Christmas songs while we wait patiently and restrained for Sarah to arrive.  A young woman, now flown the nest, but always excited for our Christmas together.

A family together – just like any other family. She arrives and the celebrations begin. Rob and I watch as Sarah and Rose follow tradition opening their stockings first. We laugh, joke and enjoy the moment. We exchange gifts and slowly unwrap each present, surprised and pleased with our discoveries.

I’m teary still; it’s overwhelming at times.

We are by the tree and it catches my eye. The beautiful bright red heart shape, sprinkled with gold that hangs there in prime position. It flashes in the Christmas light like the Christmas Star. It reminds me why I’m enjoying this beautiful moment surrounded by my family; why I enjoy every moment now; every minute; every hour; every day.

The heart decoration, a memory of my beautiful donor – the person who gave me a heart that now beats loud and strong inside me - and my new lungs, lungs that allow me to breath easily without fear.

The heart decoration, it hangs as a memory of the person who has given me another Christmas morning with my loved ones: a gift that has given me back to my family, a legacy rippling amongst us.

We carry on unwrapping our presents, but we know we have already had the greatest gift of all – the gift of a new life: a renewed family life. What greater gift could we have ever wished for?

We continue our day, just like any other ordinary family; but for us this is extraordinary …

It is NHSBT's Christmas Campaign this week and all in our transplant community are thinking of those still waiting on the transplant list and hoping they can have their lives and those of their families transformed. So if you wish to do something special for Christmas: have the discussion about organ donation with your families and sign up to the organ donor register. The link to sign up is listed below.

©Kathryn Graham

Friday, 28 November 2014

Climbing Hills!

After being told at clinic no blood tests for six weeks and no clinic for three months, I found myself back at Papworth having blood tests again on Friday! When my blood tests came through after clinic, my white blood cells had jumped from being too low to too high! So I had to be put straight back on to the Myfenax once more, not on the suggested lower dose we discussed, but back on my old dose. So the saga of the Myfenax continues on, with more blood tests now booked to keep an eye on things. 

One of my blood tests is due on Christmas Day and I told the GP's receptionist that even if they are open, I definitely won't be going for it! We had a laugh - I'm fed up with the Myfenax now - so I'm trying to laugh about it. I do know it is nothing to be bothered about really, compared to what I've already been through and what others have to go through. 

We went straight from Papworth to visit family in Lancashire. It was great to catch up with my mum and sister and my sister's family and stop over for a few days. We then drove up to the Lake District. 

We decided to go for a walk on Sunday, it was a very bright sunny day, not one you'd expect for November. There are so many places to visit, it is always hard to decide where to go, but we went to Gummer's How on the south eastern side of Windermere. It's a place we've been with our girls before and as you climb the hill, there are fabulous views. 

The views stretch out across the Coniston Fells, Central Fells and over Lake Windermere and beyond Newby Bridge. From some areas you can see right across to Morecambe Bay even. It was a perfect day to take in the views. 

 The walk starts from a Forestry Commission car park just across from the hill, which is 321 metres above sea level and is only about a mile and a half. Gummer's How is one of the highest foothills in the area though, so I'd forgotten how steep it gets - well for a person with transplanted heart and lungs, particulary the lungs - very steep. So a short walk, but a bit of a challenge for me! 

As we walked the first part through a field and some woodland, the path was just a gentle incline and the views across Windermere were stunning in the sunlight. 

Then came the first leg of the steeper bit...

I managed it though and made it to the next part...

More stunning views appeared, but it was time for a little rest for me as I was getting a bit breathless. We then went on and on and on ... up higher and higher...

I managed to get to the top of these craggy steps, but then I couldn't make the last bit up to the summit. My new lungs were all puffed out and I'd got myself too breathless. It was time to stop and get my breath back, which took a while and I was a bit disappointed in myself. Rob carried on to the top, but I stayed put as I thought I'd pushed myself enough. I didn't like the idea of having to try and get medical help stuck up on a hillside; however, I do like to try and push myself just to see what I'm capable of now! 

While I enjoyed the views, I changed my mind about being disappointed. I thought of where I have come from over the last few years and how before my transplant I would have struggled just walking up the incline on the road from the car park to the gate to the field and realised just how far I had now come, managing to clamber up most of that hillside. I know I'm lucky I managed to get that far and decided I would be proud of that, rather than beat myself up for not getting to the very top. 

This is the view of Gummer's How from the edge of Lake Windermere: when I see this I can see I managed quite a lot really!

Wainwright, the renowned Lake District fell walker, said if you fail to reach the summit then it's time to invest in a pipe and a pair of slippers rather than walking boots. Well I say I did pretty damn good in the circumstances and my walking boots still have a very long way to walk yet! But, yes, I do like my slippers too now and again!

After our little bit of hill climbing, we went down to Lake Windermere, to Fell Foot Park, where we watched the last of the autumn sunshine disappear over the lake and go down behind the moutains. 

Then it was time to get warm and have a well earned cuppa at the Swan Inn at Newby Bridge and drive on to the Strickland Arms for an early Sunday roast dinner. Pretty much a perfect day and as usual there was someone we were thinking of, someone always with me, my donor, who has given me yet another beautiful memory.