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Waiting For Transplant
Diana Chandler


Diana Chandler

Heart/Lung Transplant June 2002
________

Dianna ChandlerThe first anniversary of my heart and lung transplant found me curing myself of a long-standing problem – height phobia. I was determined to try out the London Eye, if only to prove that my phobia was completely incurable – I could always spend the ride cowering in the middle of the capsule with my eyes closed. But a few hundred feet up in the air, I remembered what was going on at that time last year – in intensive care, tubes from (almost) all orifices, and my life in the hands of a bunch of extremely skilled people. Here I was now, having spent the weekend sightseeing in London, taking part in an 8 mile sponsored walk for the charity GUCH, and having a very good time.  And I also remembered that, this time round, I had forgotten to programme the video. But, to go back in time… 

I was born with a congenital heart condition, corrected transposition of the great vessels with ventricular septal defect and pulmonary hypertension, otherwise known as Eisenmenger’s Syndrome. I raced through life despite this, and was pretty fit and active until my mid 30s or so, when stairs and hills became more of a problem. Gradually, I got more limited, but generally adapted life to cope well, and continued working as a psychologist in the NHS. At the beginning of 2002, I had three infections in a row – cold and flu like viruses, which tipped the pulmonary hypertension over edge, so breathing became more of a problem. The tale of my waiting is also on the website, so I won’t repeat all the details here. 

I only had to wait 8 and a half months in the end, with one ‘false alarm’ shortly after going on the list. I always wondered what I would do and feel once ‘The Call’ arrived. Would I be terrified, see my life flash before me, phone everyone to say goodbye and wish me luck? Would I feel prepared, bags at the ready? The phone went at ten to nine on Saturday evening, just before the end of Casualty. All I felt was annoyance at having to miss the end of my programme in order to get my instructions from Helen, the transplant co-ordinator. What would happen to Lara? And what about the man with the chip pan stuck on his head, whose wife was having an affair with the patient in the next cubicle?  I also did not want to miss the next episode of ‘24’ so spent time programming the video for the following episode, and phoning a friend to ask her to record it if I happened to be having the operation. Talk about denial. I know as a psychologist that, facing a trauma, it is important to keep on ‘processing’ what is going on, use active coping strategies and so on. All that went out of the window as I settled into a state of blissful dissociation and denial, everything happening in a dream around me.  I did not feel anxious at all. That came later. I did, however, phone Jacky, a dear friend who lives near a wishing well, asking her to throw in some coins for me. She cycled up there at midnight and said her wishes, which obviously worked. 

Having got myself organised – bag re-packed, (having taken everything out to wash and air that day), cats organised, we were whisked up to the hospital and met by Helen. On the journey up, I realised that someone, somewhere, had died. I felt very sad for that person and at the same time realising that it was a potential new life for me. Such confusing thoughts and feelings. I was on some level expecting a false alarm, but this time it was all different – on to the ward, medical history, bloods, gowns, visit to Critical Care to see my bed after the operation. Then my last memories are of being asked to lie on an anaesthetic table, someone trying to get a line into my wrist (ouch), and asking if this meant the operation was going ahead. I do not remember the answer, but do remember Mo, my husband, saying he loves me.  And, a sense of relief that I’d programmed the video.

Diana ChandlerI have a few memories of intensive care – trying to talk with the tube in, talking Greek to one of the nurses, extreme pain in my chest as one of my lungs was not inflating properly, and terror. All the anxiety I should have experienced beforehand, hit in the first few days. ‘Have you ever done this before?’, I asked the doctors and nurses. Most of them laughed. I was convinced something would go terribly wrong – the ceiling would collapse, there would be a power cut, my chest would burst open and the new bits fall out, I’ll be poisoned by the hospital food. Then, on to the ward where gradually things began to settle down. I don’t know if other people experience such extreme post-operative anxiety, but it was something completely new for me. I remember feeling very physically agitated and shaking, which meant I found it hard to relax and rest, apparently a side effect of the cyclosporin.  I tried using relaxation techniques, but the only thing that kept me going was listening to the radio and talking books. 

 The next stage was getting through the sickness – terrible nausea and vomiting, and feeling completely poisoned by all the medication. I remember asking Mo, who sat by my bedside throughout, how to get through it – ‘One minute at a time’ he kept reminding me. On the ward, I continued with a problem with one of the lungs, which had an air leak, which meant I had to be on suction for 13 days, confining me to the bed for longer than most patients. But, as soon as I was free, I could practice life with my new heart and lungs – first, wobbling my way down the corridors, then to the gym for exercises, squats, treadmill, bike and other tortures designed to illustrate the extent of muscle wastage in the last couple of years. 

I was discharged from hospital after just over 2 weeks, and spent 3 nights in Papworth’s flat, which meant we could be more independent whilst having the hospital close at hand. I went through all sorts of things during this time – I began to get momentary glimpses of excitement – I’d done it, now I’d be able to get on with a new life- but everything was overshadowed by terrible sickness and feeling completely toxic from the drugs, wondering how to cope with it all. 

The next few months were very hard work. Many times I wondered what on earth I had done, whether it had been ‘the right’ decision. Was I strong enough to get through it? Would I ever get used to the medication, which I had to take for the rest of my life? What if I felt like this for ever? I knew, rationally, that of course things would get better, but the combination of major surgery and a hefty dose of medications sent rational thought off with the fairies. Back at home I forced myself to get on with an exercise routine to try and build up my wasted muscles – home exercises and two walks a day, dealing with all the medication, and fighting the sickness. I had to go back to Papworth for three stays after the operation – one for a lung biopsy which showed that everything was fine, and twice for sickness – I would get to the stage where I needed IV medication and fluids, and during these stays they reduced all the medication considerably until we found a cocktail that I could tolerate. 

The treatment throughout, from Papworth, was fantastic. The operation was a compete success, I had a very good donor, and was well looked after throughout. My major problem was in tolerating the drugs – I have always had a problem with getting sick on medication, and it took a long time to settle down for me.  But, I did eventually – after about 4 months, the nausea receded and then the real healing began. All through the process, we have had fantastic support from family and friends. My parents, two sisters and brother rallied round to support and help in all sorts of ways, and a number of close friends were excellent in helping us both get through this difficult time. I also found it helpful to look on the website, and realise that other people did have successful transplants, that the recovery phase was a necessary and finite process to get through. I sometimes wish that myself, as I am now, could go back in time to Diana Chandlerthose difficult days and reassure myself that it will get better. I know now to try and be more patient, take one day at a time, set myself small goals each day, and make a plan, however modest, for my time to help give a sense of direction. During this time I also learned Mindfulness meditation, a form of meditation that has been extensively used in the US for hospital patients, and those with pain or other medical problems. I personally have found it extremely helpful in getting through a difficult time (John Kabat-Zinn,s book “Full Catastrophe Living”). I also learned to trust that other people can help in difficult times, and to allow them to take over for me when the going was too tough. As a result we have strengthened many relationships and formed new ones, a true bonus to arise from adversity. 

My drug regime reduced considerably after three months. I changed from cyclosporin to tacrolimus, since on cyclosporin I grew a beard – not part of my life plan, and quite distressing. Now, I am on: tacrolimus; mycophenolate; prednisolone (having the lungs transplanted as well as heart means long term steroid treatment but at sufficiently low dose not to look too much like a chipmunk), omeprasole; alendronic acid and calcium for low bone density (years of inactivity plus long-term steroids); pravastatin (now standard for long-term cholesterol reduction); amlodipine (slightly high blood pressure); co-trimoxazole; aspirin; and iron, since I am still a bit anaemic. I also had very bad headaches from the tacrolimus, so am also taking 10mg amitriptyline, which helps. The medication routine sounds a lot, but is taken in two doses, morning and evening, and I have my little routines so it is a normal part of life. 

In the last few months, life has been fantastic, and very hard work. I can do things I’ve never been able to do in my life. I’ve been going to the gym to build up muscles I did not know existed, and going walking regularly, enjoying long walks in the country with Mo,  and being able to walk up hills. We’ve taken up Salsa dancing, and I’ve been sorting out the house and garden, neglected for a couple of years during my illness. I’m now thinking about going back to work in the autumn. It is a long and slow process – I am impatient for change, and wanted everything to happen at once – but in retrospect, everything happened in its own good time, and getting fit again when in ones 40s is not as easy as for younger people.  I would like to start running, and perhaps take part in some of the charity runs, but having been out of action for several years, this may take time. 

Throughout all this process, I’ve been very aware of my donor – none of this would have been possible without her sudden death at a young age. I felt so sad for her and her family in the first weeks, and during my anniversary weekend was aware of how painful that time must be for another family, somewhere else. I am so grateful that my donor and her family chose to donate her  organs- I sat down to write to them a few weeks ago, thinking I would not know what to say, but in fact the words immediately came to me and I knew what I wanted to say. For ages after the operation my heart and lungs did not feel like mine – I had a new heart-beat, which at times I could hear, like an external hammering,  and breathing felt completely different. I felt there was an alien inside me. But, someone reminded me that my heart and lungs were a gift – and a gift that is now mine. Now, they feel completely part of me. I am so determined to live my life well and make each day count. I am alive, and my donor is not – but she has passed on something extremely valuable to me, and hopefully to other people. So, thank you to my donor, and her family, for their gift of my life.

Diana Chandler


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