Waiting to Jump for Joy Again


Ten years ago, breathing started to become painful for me and climbing stairs became a minor problem. I was diagnosed with ‘fibrosing alveolitis’ which soon changed its name to ‘idiopathic pulmonary fibrosis’. Life continued more or less as normal. Some five years after this first diagnosis, I moved to North London and changed my pulmonologist. During my first appointment with Dr Jo Porter at UCH, I learned that what I have is a rare disease called systemic sclerosis (aka scleroderma.) This is an auto-immune disease which can take several forms. With me, it’s chosen to attack my lungs. But life went on more or less as normal.

Five years down the line, it became obvious that life wasn’t normal any more. I had to stop work. Since 1982, I had been a London Blue Badge tourist guide; a job I loved. Retirement was not an attractive option. In the second half of 2012, I was referred to the scleroderma clinic at Royal Free Hospital and was put on a form of chemotherapy. I only had two infusions, a month apart, when it was discovered that my liver was becoming damaged. A little later, tests revealed two pulmonary embolisms that meant I had to be put on Warfarin. Not long after this, I was tested for pulmonary hypertension and found to have a ‘stiff’ heart. Things were obviously not looking good and I was given ambulatory oxygen. A few more months, and I’m now using oxygen 16 hours a day. The sofa and the TV have become my friends.

Back at UCH, Dr Porter asked – for the second time – if I would consider being evaluated for a lung transplant. My first answer had been ‘no thanks’. This time I took into account the reality of how limited my life had become and agreed to be assessed at Papworth Hospital. I had little hope that they would see me as a suitable candidate: I’m 63 and I live alone. But within a couple of weeks, I had an appointment for a preliminary appointment at Papworth and this seemed to go very well.  I met the transplant doctors and co-ordinators and was given a huge amount of information. Perhaps, more importantly, I was encouraged to ask anything at all about the transplant process. It was explained very clearly that a lung transplant would not necessarily extend my life, but it could certainly give me a far better quality of life. There were plenty of warnings though: I would remain immune suppressed for the rest of my life; thus, there would always be a danger of infection. Rejection is a major problem too and the enormous amount of different medications would open up the possibility of kidney failure, skin cancer and other challenges. All of which, the medical staff stressed, can be dealt with. When they asked me if I still wanted to go ahead, the answer was a huge ‘yes’.

Within a week I was back at Papworth for three days of tests. Everything was explained. Every question answered. I was treated with enormous kindness and consideration throughout and knew that I was in very good hands. On 21st August 2013, to my surprise and delight, I received a phone call to say I was actively on the waiting list and should pack a bag to keep by the door, ready for the call when will tell me that a suitable lung has become available.

That was three months ago. There’s no way of knowing when that call will come. As I see it, there are two possible outcomes: either I die fairly soon, weak, feeble and breathless, or I’m given a new lung. If I survive, I may have anything up to another ten years during which, in spite of being poisoned by all the toxic chemicals I shall be required to ingest every day, in spite of the possibility of rejection, I shall be able to run for buses and walk in the woods and climb stairs and hills and cliffs. And jump for joy. Won’t that be wonderful?


2 thoughts on "Waiting to Jump for Joy Again"

  1. The UCLH satellite outreach lung transplant clinic has been set up in collaboration with Papworth Hospital, whereby the Transplant Team come to UCH to assess patients. This has the advantage that suitable patients can be introduced early on to the idea of lung transplantation and can meet the Transplant Team at UCLH before making a decision on whether to go ahead. It’s an exciting project which might make life a little easier for respiratory patients. Breathing Matters

  2. This would indeed have made my initial appointment a lot easier. Papworth is quite a journey if, like me, you don’t have a car and for a first assessment, it would have been so much more convenient to see the Papworth people in the familiar surroundings of UCLH.

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