Friday, 1 November 2013

A Heart Beating so Powerful and Strong

Since I had my heart and lung transplant, a whole month ago now, lots of people keep asking me, 'What does it feel like?' 'Do I feel any different?' While I waited all that time for my transplant I constantly pondered if it would feel any different with a new heart and lungs compared to those I've been used to or if I would just feel the same, but with new organs I would hopefully feel well.

When I first woke up in intensive care I was very, very weak, still battling a few problems and I was aware I was very poorly, but the one significant thing that sticks in my mind is laying there and feeling and listening to the strong, powerful beat of my new heart. A heart pumping so fiercely that my body felt almost lop-sided to the left. A feeling that I had never felt in my whole life before. I knew there and then that although my old heart had worked hard for me for many years, it had never felt like this. This felt different, this made me think and gave me hope that I really will be able to do things again and even do them better than before my illness. This sensation stayed for quite a few days, I knew I had something strong inside me, which was going to take me to a whole new world. 

When I became a lot stronger and came out of intensive care, the intense feeling subsided to be replaced with a feeling of confidence, because I felt a strong heartbeat and my new lungs were giving me high oxygen levels. My sats are always at 98 or 99 - how wonderful is that? Amazing is all I can think, there is a wonderful flow of oxygen in my blood and my strong heart means it is getting to every bit of my body. 

When I was unconscious in intensive care, the first thing my family noticed that had strikingly improved, was my skin tone. I used to have a very grey pallor and then after I was given the Epopostrenol drug it made me flush bright red constantly all day long, if I wasn't flushed bright red, I was covered in bright red blotches. Suddenly over a day, my skin was clear and more peachy looking, my lips had turned to bright pink, yes lovely pink, after being blue for years. Even unconscious I was looking healthier. This gave my family hope at a worrying time, as they could see improvement. The medical staff were even commenting on it. 

I was unaware of all this and although everyone kept telling me, it wasn't until I left intensive care and went on to Mallard Ward that I saw myself in a mirror for the first time. I haven't been able to stop staring since, it is a shock every time I see myself and I'm taken aback. My eyes are suddenly clear and bright too, they were often blotchy and bloodshot with my medication and illness. The new drugs have also given me a bit of weight on my face and the gaunt look has vanished. All of a sudden I've got a whole new look, something unexpected from all of this, something that had never entered my head while I waited for my transplant. All I ever wanted was just to walk properly and then in turn I might look healthy if I could exercise, the healthy look came straight away with my new heart and lungs. So here I am with a whole new look I hadn't bargained for, I think I can honestly put my hand on my (new) heart and say my transplant has been a blessing just to be given that surprise gift. 

While I was on my Epopostrenol drug, something happened to trigger severe eczema on my arms and legs, then with all the flushing redness the drug gave me it was exacerbated and was spiralling out of control, whatever medication I tried. It would bring me to tears at night when the flushing was at its worst. With all the fatigue and problems of PH, coupled with this, I was unable to go out in the evening anymore. When I regained concsiousness, my eczema had disappeared completely. I'm using soap again now and gentle moisturisers and a few nights ago I went out to the pub for dinner, the pub was all lit up with candles, a sight I haven't seen for a while! 

Epopostrenol always gives a nasty side effect of jaw pain, for me, as they increased the drug from time to time the pain increased in intensity. Then it also caused me severe tummy problems, I was becoming more intolerant of various foods and using anti sickness and diarrhoea drugs to try and counteract and control the problems. This does not happen to a lot of people who use this drug, but unfortunately for me it did and it is one of the reasons that transplant was an attractive option, dealing with all the side effects of my main drug and the symptoms of my illness was really impinging on my quality of life. We did not really know how much more of this drug I would be able to tolerate and I was always full of angst when I could see the need for an increase coming. I don't think I was far off needing yet another increase as the fainting symptoms were rearing again and I had been back in hospital the week before my transplant.

The jaw pain went straight away after my transplant and then after the withdrawal period from the drug, which was stopped during my transplant, my stomach has settled down and so far I am coping with my new drugs well. Although I have to have a serious amount of medication now post transplant there is nothing so complicated as making up that intravenous drug Epopostrenol and all the equipment that needs to be managed that goes with it. All is gone now, I don't have to carry a pump around on my shoulder or disguised as best as I can under my clothes anymore and I don't have to walk round with the risk of getting a life threatening infection via the Hickman line that delivered the drug all day and night straight into my heart, lungs and bloodstream. Of course I was more than happy to have this drug too, whatever it threw at me, it kept my illness at bay, it stopped me passing out every five minutes, it gave me some life back and I was able to make the most of life while I waited for my transplant, it actually saved my life, but all those burdens it brought were gone in a flash or soon after transplant. 

So now here I am, some very stark differences in my health, so soon after my transplant, some unexpected ones, some I had hoped for. I am now in a world where things should go forward and get better and better, my strength is getting better each day, every moment is a precious moment I can't take for granted. My exercise tolerance is getting better, I'm using an exercise bike, something I wouldn't dare to think of before, I don't think it will be long before I will be able to walk further than I could during my illness; I'm wearing everything I fancy without the worry of how a pump and Hickman Line may look and I've rediscovered my belts that I can now wear out over my clothes. I am just savouring all these new gifts my transplant has brought me, even at this early stage, much more than I could have ever dreamt. I feel a bit like a butterfly trying to emerge out of a chrysalis, I'm climbing out slowly, but very surely! 

I don't know how I can even begin to thank my donor and their family for all they have given me and all the changes in my health that have happened in such a short space of time and on top of this there is all the hope they have given me for a better future. They are never far from my thoughts. 

It is an overwhelming gift.

I would like to dedicate this blog, which to me is full of new hope and gifts to some very special people:

Firstly to my lovely friend Anne, who is also always in my thoughts and lost her battle with PH and transplant last summer. She has been in my thoughts throughout my transplant journey so far. How could she not be? I have just been in all the same places I was with her last. Anne always had a beautiful and brave smile, whatever came her way and whatever she faced. Every time I've found it hard during this last few weeks, I have thought of her and tried to follow her example and bravery. I have tried to put a smile back on my face and know I have been more than lucky to have been given the new chances and precious moments I have. Anne will always encourage me on. 

And to Toby and his family. Toby sadly lost his life tragically just before he was seventeen and had told his family that if anything should happen to him, he would like to donate his organs to help others. Toby, Graham, Sally and Stephen you have given a new lease of life to others, who have been in similar, if not worse situations than me. I hope you can see how precious the gifts are that you have given and what a difference those special gifts will have made, even so soon after transplant; transplant changes lives dramatically, you should be so proud. 

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