Tuesday, 14 January 2014

Freedom and Footloose and Fancy Free!

I am leaning on the railings of the bridge, looking out over the vast expanse of river down towards the city scape on the horizon. The ripples of the river are sparkiling in the late afternoon sunshine and there are echoes all around me of crowds and people - busy, enjoyment, hustle and bustle, Saturday afternoon revelling. Traffic is flowing behind me, the quiet still of the cyclists and the hum of cars and taxis paled by the loud drumming of the buses, the whirring of sirens and the roar of motorbikes. In front of me there is more traffic - the river craft - river buses, barges, tugs, pleasure craft - some stationary, some moving, some speeding in exhilaration and fun. It is a feast for my eyes and I feel life is all around me: circling me, engulfing me in, daring me to join in properly once again...

It's just over three months post transplant and it's time to come out of my comfort zone of the last few months.

For a short while now I have achieved a good level of health again, in many ways similar to the level I was pre transplant, obviously though without the same problems, many of those are long gone now. There have been some new problems though, especially the need to build up my strength and fitness after the operation left me feeling so weak and tired and I've still been working around medication and the various issues that come with that, albeit different medication. 

I feel comfortable with this, it's safe, it's familiar to what I've got used to over the last several years. I'm delighted I've got back to this level though after what we have been through and knowing how transplant can be so difficult. I'm delighted I have got this far - it's good to be pottering about again, getting out and about and taking short walks. It isn't, however, what I had my transplant for - to lead just a similar life to before, to just be happy with my lot as it is now - so after giving myself a few months for recovery I know it's time to take more demanding steps and try and push and challenge myself that bit harder. I need to break the mould of the last several years and go beyond it - living life to its fullest again in yet another new way. 

After a positive hospital visit last week, I was given a brand new lease of life, medication that had 'hindered' me in various ways - water tablets and nebulisers- were stopped and this in its turn led me open to a new lease of life. So feeling much better and stronger, Thursday was a brand new day and started without these drugs and overnight my medication regime and way of life changed - only tablets now, but none that make restrictions on me, except they need to be taken on time - tablets that can be popped in my handbag and taken on the go - just like a takeway latte or cappucino! Suddenly I'd been handed my freedom back after years of being shackled to intravenous drugs, nebulisers and diuretics. This may seem a simple thing to many, but for me it knows no bounds and for now I am free, free, free - footloose and fancy free again!

I found this a great spring board to make some more big steps - I've known I should be trying a bit more, pushing myself to walk a bit further, daring myself and allowing myself to get breathless a little. I have been so scared to do anything that makes me breathless for years now - breathlessness always whispered fainting for me, fainting always said heart failure, heart failure shouted out more debilitating drugs and it was a neverending vicious circle of must not do ... I can't get breathless. 

On Thursday we went out shopping, I could only normally manage one shop or a couple of shops if they were close by, but this day I walked at pace around the whole shopping centre for over an hour, then we visited John Lewis, a short stroll away and spent another hour or so there, then I walked to a restaurant for dinner and finally returned to the car having walked up three flights of steps without a stop or a look back. I took the plunge, went for it and succeeded, now I know I have surpassed the limits I had pre transplant and that I am so much stronger and fitter than I have been for years. I have always felt from the very beginning that  my transplant has been life changing, now I know it is much more than that, I have my life back once more, good and proper, I don't feel ill and exhausted like I did, I have much more energy and zest. 

On Friday, we were interviewed for a magazine article in Hertfordshire Life, they approached us following our article in the local paper. We were more than happy and delighted to try and spread the word once more about organ donation, especially as I am beginning even more, as the weeks go on, to understand just exactly what a life changing event transplant has been for me.

On Saturday we ventured into London for the first time in years without a wheelchair, nebuliser or intravenous drugs. I walked it to the station, at a good pace and ventured up the steps without hesitation - I can do those now! Once at Kings Cross, I was marching along the platform like a real commuter, amongst the bustle, an unafraid, confident new me. We spent the afternoon strolling around Westminster and soaking up the atmosphere, feeling strong on my legs and different than before and I still had the energy left to meet up with friends later and enjoy their company for the evening. In times past, just getting into London using a wheelchair would have been enough for me and I would have been exhausted.

We stayed over in London, because on Sunday we were going to my friend's party for the afternoon,  I'd planned a lazy morning so I wouldn't overdo it. The sun was shining though, the sights and atmosphere were beckoning and my camera was looking at me saying, 'please take me out there!' So feeling full of energy again, off we went for an unplanned long stroll down Southbank with the cameras.

We had a fabulous afternoon at the party, catching up with friends. The taxi driver had dropped us off at the wrong end of the street to get to the party too, so I'd had quite another long walk to get there, but I still had loads of energy! Where is it all coming from? I found myself feeling much more sociable than ever - not that I've ever been unsociable during my illness - but there was only so much I could manage before I would begin to wane and I could only concentrate on conversation for short time before I would feel tired and exhausted. This day was different and it began to sink in for both Rob and I what a huge change had happened with my transplant and how I am now able to do things again that I haven't done for years. I realised I have begun to join back in life with a new energy. 

We had dinner later on and went for yet another walk afterwards, it was raining and lights were twinkling around us everywhere and reflecting on the wet pavements and the river. It all looked and felt very magical and in that moment that was our reality right then, transplant had woven its magic. Our lives feel magical once more, I can do things once more that I could only dream about three months ago. I am finding I can do more and more and even more. I dare to hope how far I can go now.

It is an unremarkable Monday morning for many, but for us the sun is shining brightly in more ways than one, the sky is blue without a trace of cloud, it seems to look bluer than ever before: not what was forecast, but who ever really knows the future weather and all? We have stopped half way across Westminster Bridge to lean over and admire the view once more. We are going for another walk, this time even more ambitious and further and we are on our way up to St James' Park. The bridge is teeming with life, it is all around us and this time right within. This time it's a working day, we stand transfixed at the view, amongst all the foreign tourists strolling past us; business people hurriedly striding and strutting to the next meeting;  politicians treading up to Parliament; stall holders shouting;  busy traffic, both river and road, whirring in parallel to the human hustle and bustle. Rob turns to me and says, 'I have got you back.'


  1. Been reading your blog for a while and thought I'd say hi! Fantastic news that you are feeling 'normal', funny how something so simple as a day in the city, can be such a wonderful thing. Health is something so many of us take for granted. Keep up the good fight, you are an inspiration!
    Nicole (Virginia USA, formerly of Cheshunt.)

  2. Another lovely inspiring blog Kath. X

  3. Thanks for your kind comments!

  4. Hello Kathryn, I made a quick comment earlier. I've been reading you blight pre and post your transplant, and find it very interesting and informative. My partner John has idiopathic pulmonary fibrosis. He has been on the lung transplant list at Harefield for 4 months, so is waiting for"the call". Great to hear that you've recovered so well, especially after the difficult time immediately post op. Best wishes, from Kath Thomas

  5. Kath, I hope your husband gets his call very soon and wish you both well. xxx