Living Life in the Moment

Cheeky robin greeting us on the path at Titchwell Marsh

When I was first diagnosed with Pulmonary Hypertension I decided to take ill health retirement from my teaching career because I wasn't well enough to be working and I was also given a very poor prognosis of only a few years to live. I decided there and then I wanted to make the most of that time enjoying myself with my family and friends. 

Titchwell Marsh RSPB Reserve

The wonder of having a walk!

Rob was also forced to give up his career too as he couldn't commit to it properly anymore. He was having to take months off at a time to care for me as we lurched from one crisis to another and I was in and out of hospital regularly. It was all something of a roller coaster when I look back.

The Beach at Titchwell

Eventually when things settled down, Rob managed to go back to work just part time, which has suited us well. So, even though I'm now feeling much better, circumstances have dictated that we have now ended up retired and semi retired much earlier and younger than we ever planned for! 

Storm Damage

Transplant can be an incredible thing, something of a miracle cure. For several years we were really preparing ourselves for the worst to happen, then next up after a simple life changing phone call, I was fighting hard for my one and only chance to recover. Now recovery has come and I've got my chance to rebuild my life.

An Avocet

 It is probably hard to understand the reality of this if you haven't ever been through it, but this is why I keep pinching myself at being able to do the most simplest of things and keep stopping as I walk along in amazement of it all. When everything is being slowly and cruelly taken away from you and you have learnt to accept this, to be given it all back once more can be quite startling and shocking. 

Having both had to literally and unexpectedly walk out of careers we loved and suddenly focus on facing a tough and debilitating illness, with my new found health we are discovering what it is to thoroughly enjoy life again and trying to make the most of our 'early retirement'. 

Friends are often saying how we are always getting out and about all the time, well I suppose it's because we have learnt how precious life is and we consciously decided to make the time to thoroughly enjoy it from the onset of my illness. 

Is it a sea mist or the dreaded smog?

There is still great uncertainty over my life expectancy, we have known friends who haven't managed to survive the first few months of transplant and we have met others who have celebrated over ten to fifteen years of new life post transplant and are still enjoying life to the full.

Curlew enjoying lunch on the mud flats!

The hard fact regarding a lung transplant is that only 50% of patients survive longer than five years. Life expectancy for a lung transplant is poorer than for other transplanted organs. This is because of the infection risks, which are greater in lungs, because you are open to inhaling all kinds of viruses, bacteria and fungi straight into them. These can attack the lungs and cause chronic rejection or life threatening illness. 

I have always been advised by the transplant nurse that transplant is swapping one set of problems for another and hopefully with that will be a better quality of life and better prognosis and if I can view it like that then I won't be disappointed. So far I have been amazed at what my transplant has given me and how much better I feel and how much more I can do. It has been well worth all the risks just to get this far. 

I also know how things can change at the drop of a hat: I know what it is like to deal with feeling ill, not just having a bad cold or flu for a week or so, but having to live both physically and mentally with terminal, chronic and debilitating illness day in, day out for years on end. 

So for us, life is still a very precious thing and something to be enjoyed. It is a case of living in the moment, not thinking too much of what the future may bring or looking too far ahead, but living for the now while it can be enjoyed. 

Brancaster Staithe

Being retired means that we have the freedom to go off and do what we want when we want. The weather was good over the weekend and on Tuesday we decided to make most of the sunshine and went off to north Norfolk to visit Titchwell Marsh RSPB bird reserve. 

Blakeney

In a nutshell, it is described as a place of big skies, sandy beaches and bird filled marshes. We spent a good few hours there and spotted marsh harriers, red kites, common skoters, avocets, brent geese and redshanks to name but a few, all while having a beautiful and scenic walk towards the beach. We then drove onto Brancaster Staithe and Blakney and did a bit of shopping in Burnham Market. We enjoyed an early dinner and stayed over for a night in the pub there.

Burnham Market. Finishing the day with a bit of retail therapy!

We did a lot of walking that day and my pedometer recorded 6.15 kilometres, very apt, a kilometre for every month post transplant! If anyone would have asked me if I would ever walk this far six months ago, it would have been beyond my wildest dreams!

Putting those walking boots to good use now!

More Birthday Celebrations

It was birthday time again in our household this weekend. This time Sarah's, who turned 22 on Sunday. We cannot quite believe she is now 22, sometimes it only feels like yesterday when she was born. To celebrate we drove across to Norfolk to spend a night and have some time together by the coast. 

It was yet another one of those milestones for me. Sarah was 18 when I was first diagnosed with my Pulmonary Hypertension. She was literally about to start her A level exams and she ended up having to go through her exams knowing that I had just been told I hadn't got long to live, so it was one big struggle for her to get through them. 

For me, given what I'd been told, I didn't really ever know whether I would see her reach 19, yet alone 22. I was told by my cardiologist at my local hospital at the very outset when they found my heart was dilated, that I wouldn't have many years to live, this was before any formal diagnosis was made. I can remember always clinging to the hope that I may see her celebrate her 21st birthday, so every year we celebrate beyond that now is a blessing.

 Sarah didn't get her first choice of university, but after some frantic phone calls and going through the very stressful 'clearing' process', she managed to get a place at a university she was very happy with.  Unfortunately the university then messed up her accommodation arrangements, so she decided to defer her place for a year, when they would guarantee her a place in the student halls. 

It began to feel a bit like everything was going against us at the time, Sarah's grandfather had just had a heart bypass operation too, which hadn't been successful and he was very unwell. My health just then deteriorated more and more and by the time we got to the following September, when she should have gone away, I had just been listed for a heart and double lung transplant. 

During that year, Sarah worked full time at Waitrose, where she had had a weekend job while she completed her A levels. She often worked shifts and so had a lot of spare time during the day and she spent many an hour taking me out and about and keeping me company during that awful first year of my illness. So although university hadn't worked out for her, for me it had been a blessing in disguise - not that I'd ever wanted to stop Sarah going to university. Her being at home with me and spending time with me helped get me through that first very frightening year. She also took me for hospital appointments and doctor's appointments and always kept me laughing.

When it came to actually going off to university, Sarah decided it wasn't for her any more. Our lives had changed dramatically over the year with my illness and she was also by this time seeing Oli, who is now her fiancee. Sarah decided to complete her studies through the Open University and to continue working full time. She then moved on from Waitrose and now works for an insurance company, is half way though her OU course and has started her insurance exams.

 She has managed to come a long way through all my illness. It's funny how things have a way of working themselves out for the best somehow through life's little twists and turns. We are now all excited and looking forward to planning Sarah's wedding next year...there is so much to look forward to. 

We had a lovely time in Norfolk, after spending the Saturday afternoon on Brancaster Beach, we spent the evening with Sarah and Oli to celebrate her birthday. We all stayed over and enjoyed breakfast together on Sarah's actual birthday morning. 

We walked off our big breakfast along the coast path at Brancaster Staithe and then we enjoyed a lovely day out in Wells- Next-to-the-Sea. We stopped off at the beach cafe for coffee and then had a lovely long walk along the beach again. I reckon I managed to walk another 4 kilometres that day and just kept on going, which again simply just amazes me after how I used to be and how little I was able to manage. 

Once again, I've been blessed to see Sarah have another birthday and I'm thankful I was able to enjoy the day with her and Oli, doing things that I had once accepted that I would never be able to do ever again. It is all thanks to my donor and their family, who I thank with all my heart for giving me this second chance at life.