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Waiting For Transplant
Diana Chandler

Diana Chandler
Heart/lung Transplant June 2002

Waiting For Transplant

Diana ChandlerI thought it would be helpful to have something on the web site about waiting for a transplant. Those who have had successful transplants can look back on those days with relief, and let us know how they survived, and those still waiting can share experiences and ideas. It is such a strange time, being in limbo between illness and an uncertain but hopefully much better future. So, I am telling my story to date, and would like to hear from people who are waiting for transplants, with tips on how to keep sane. 

I’ve been waiting on the active list for seven months for a heart and lung transplant, at Papworth Hospital. I was born with a congenital heart condition, Eisenmengers Syndrome. My aorta and pulmonary arteries are plumbed into the wrong sides, with a large ventricular septal defect – in other words, a very faulty boiler with a big hole in the middle which sends the hot and cold in the wrong direction. The heart condition causes, pulmonary hypertension (very high blood pressure around the lungs and low around the body), arrhythmias, when my heart beats very erratically and fast, and extreme breathlessness on exercise. I’ve always varied between various delicate shades of purple and blue, but despite this have led a reasonably healthy and active life. I worked as a Psychologist in the Health Service, could go on holidays, walk a bit and swam regularly. 

Over the last few years my health has gradually deteriorated. Each year I’ve become a bit more breathless and tired and have had to gradually cut down on work. My exercise tolerance has been gradually decreasing over the years, meaning that even a short walk would cause me to gasp for breath, and stairs and hills became impassable. I still struggled on, finding ways of coping, by using the car, lifts and escalators, or walking very slowly: my ideal walking companion was a 2 year old, or a dog insisting on stopping every five yards. I was assessed for a transplant at Papworth 18 months ago, and was told that it was definitely a possibility in the future, but I was then too well to be considered. I remember going home from the assessment and saying to Mo, my husband, how I felt reassured that I would have at least 5 more years before I would need to even think about surgery. Famous last words. Within a few months, just before my 45th birthday, I was in hospital, breathless on the slightest exertion, oxygen saturation on exercise down to 40 percent, reaching only 75 percent at rest, washed out and exhausted. My reaction then was to be very cross – how dare I be deprived of the next 5 years I’d planned before my transplant? Gradually it dawned on me that I was not going to get better. To keep stable, I need to use oxygen at home 20 hours per day and generally not exert myself. I had to take medical retirement from work and need a lot of help from other people – I’ve always prided myself on being as independent as possible, and asking for help did not come easily- needing a wheelchair to go more than a few steps and generally having a quiet life. 

We went back to Papworth for another assessment. Although my cardiologist in Oxford had strongly advised me to go on the list as soon as possible, Papworth encouraged us to make the decision for ourselves, balancing the risks of a transplant and all the medication afterwards, with the risks of not having one. My heart condition means that I am not in immediate danger, unlike many others who are waiting for transplants, so without one, I could look at best at a year or two of diminishing health, but with a rapidly deteriorating quality of life. Having a transplant may mean a 10 to 20 percent chance of not surviving the operation. I was sure I wanted a transplant at some stage, but making the decision as to when felt like one of the most difficult things I’ve had to do in my life. After much talking and agonising, Mo and I decided that for me my quality of life was intolerable, and we were willing to take the risk. For a few days after going on the list, I was terrified – was it the right decision? Better the devil I know? Then, two weeks later, completely out of the blue, the call arrived at 8.30 pm one Friday. I was ready to go to bed, and Mo had gone off to a DIY sale to buy a ladder! After the rush up the motorway, it turned out to be a false alarm, and we were back at home at 3am. I had been warned about false alarms, and it was good in the sense that I realised I had made absolutely the right decision, and would have been happy to go through the operation that night. 

That was seven months ago now. Life is in limbo, making it difficult to make long term plans, and quite a challenge, feeling unwell most of the time, and missing all those things that I used to be able to do. The harsh reality of transplants means that my life depends on another life coming to an end. I sometimes get a sense that I am living in parallel with someone else, who I do not know, who will eventually donate their organs. I am pretty sure that one day I will get a transplant; this means that my donor, whoever they are, is certain to die a premature death, but they do not know it at the moment. Two lives, side by side, which will eventually become one. Thinking about the donor issue is one of the most painful – by wanting to hurry up the transplant process, am I wanting to shorten someone else’s life? Does my need for a transplant in some way cause the other person’s death? I take comfort from the knowledge that I am in no way responsible for what will happen, but through the generosity of a donor and his or her family, able to benefit from their death. I take comfort, also, from hearing that families who agree to donate their relative’s organs find it useful in coming to terms with what might be a senseless death, and feel that at least something good can come out of such a loss. 

I am coping with waiting by living each day as it comes, and, although clichéd, trying to get the best out of my time, however small and achievements may be. If I do not have a successful transplant, I owe it to myself and others in my life to live as well as possible at the moment. Obviously this is difficult at times. Sometimes the waiting feels unbearable, and we long to get on with the next stage of life. The most difficult waiting days are when I get preoccupied with the transplant: what if I get the call tonight? What might happen? Have I paid all my bills? Is my hair OK to last three weeks without a cut? I am at times very aware of the phone and am on hyper alert waiting for the call– the lurch if the phone rings after 9pm must be known well to all waitees. Every phone call brings a jolt of hope and a let down that it is not the ‘right’ call. Some nights I lie awake waiting for the phone to ring, and for a few nights after my false alarm, ringing phones featured loudly in my dreams, such that I turfed my long suffering husband out of bed one night to check the phone downstairs. I experience a sense of disappointment when I wake up, realising that another night has gone by without a transplant.

 This state of hyper awareness has been the least helpful. The rest of the time I try and relegate thoughts about the transplant to a small thought bubble that follows me around, but I do not pay it any attention. I have found getting into routines helpful, and getting on with whatever I can do rather than getting frustrated about what is not possible. I realised one day that the most helpful approach for me was to pretend that how I am now is going to be permanent, so what do I need to make life as good as possible? I am able to do a small amount of writing- I write books on various aspects of counselling and psychotherapy- and overall do as much as possible, depending on how I feel. On a good day, we go out to a garden centre, into town or out for lunch. We organise help from others, friends to take me out and tell me their gossip, a wheelchair and mobile oxygen. Wearing oxygen in public is an interesting experience, and I am sure a tube across the face will soon become an essential fashion accessory. I thought of wearing a large bushy beard to hide the cannula, but have not been able to find one in the right shade. By taking oxygen out with us, I can do more, such as go to the cinema, where we sneak a small cylinder in and I sneak on the tube once the lights go down.

 Waiting for a transplant seems to be a hot topic for people’s interest and advice. I dread the question ‘when exactly are you going to have the transplant?’. Some people have offered helpful suggestions ; why don’t you go privately? I was not aware that private hospitals employed their own hit men. Go and have the transplant abroad – they have much shorter lists. Yes, but I have had fantastic treatment from the UK, and would not go anywhere else even if I could. Have a long holiday abroad – that will make the time go faster. Ummm… Aren’t you lucky having all this time for reading/watching TV/ doing nothing/ listening to every episode of the Archers three times/ having a disabled parking permit.. And aren’t you unfortunate in being born with the tact of a rhinoceros. Some want to know all the gory details about transplants, such as how the organs are transported. I try and give information where possible, since raising awareness of the issues of organ donation will hopefully lead to more people taking action for themselves or their relatives. Our friends and family have been fantastic, offering us support and help in lots of ways, from meals from our friends next door, to friends who ring or e mail regularly with their gossip and suggestions of new books or videos. I do not want to talk much about what it is like, or endlessly moan about how awful everything is, since in many ways there is not much to say and we feel very boring at the moment. I would rather focus on coping and hope for the future. We love to see people who have ordinary lives in the hope that some of it will rub off on us. Overall, I describe my life as living in the corridor: the door has shut to my past life, and another door will open to my new life, where I can do all those things that I have never been able to do. I do not know which door or when, but remain hopeful that it will happen sometime. I just hope that my eventual donor, whoever or wherever she or he is, knows how sad I will always be at their death, but how immensely grateful I will always be for giving me life.

 Diana Chandler

Texas "Bob" Pitcock
Heart Transplant Jan-1991
Bob Pitcock

Yes, I have lived a wonderful life, but the most exciting part of my life has been the past 16 years post heart transplant.

Very ironic, how being very close to death then being given the chance for a extended life, can truly open your eyes as to how precious life is.

Life is a Gift of God and not meant to be taken lightly.

The word LOVE is used in my conversations every day of my life since I have been given this
"Second Chance".

Never wait 'til it is too late, to tell folks in your life that you love them, by golly. As long as St Peter keeps on dustin' off my "Welcome Mat", I will share my feelings with everyone that I come in contact with.

Too many folks take life for granted. There's only one ride on this "Merry-Go-Round" of life----------Make it count !!!!!!

Ol' Bo

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