Life Stories

My Journey to the Transplant List

IPF is very difficult to diagnose.  Mine was discovered in January 2013 quite by accident, having been sent for a chest X-ray and having a lung function test and hi-res scan after losing my voice with a bad cold.

We had never heard of IPF and I said " I thought you were going to tell me I had cancer".  My consultant replied "You would be better off with cancer!"  We then realised how serious it was.  However, my condition was put on the back burner for the next three months as my daughter, Kim, was in the same hospital fighting for her life having had surgery for a burst bowel and fighting through sepsis, a colonoscopy and total organ shutdown.

A new drug called Pirfenidone (Esbriet) was introduced to the NHS in April 2013.  Although not a cure for IPF, it was designed to slow the progress of this disease. We were keen to see if I could be put forward to have this drug, which was still being researched.  It was only available in nine UK centres so we contacted the University Hospital of Stoke and I was asked to attend a full day of testing.  The two things that could have stood in my way were the cost (c£27k pa) and my age.  The prognosis of IPF was a life expectancy of 3-5 years, so we were unsure if I would be accepted.  Fortunately, I was accepted to try this drug and came away from the hospital with the first three months' supply.  It was the first little glimmer of hope we had in somehow getting through this testing time.  The side effects could be quite severe, but it was my only chance to survive this dreadful illness.

I was still working full time when I started taking this drug in October 2013.  The first month was pretty bad: nausea, diarrhoea and feeling pretty lousy.  I visited the hospital every four weeks to have blood tests to ensure that my kidneys and liver were coping with the drug.  Although I was feeling quite ill, there was no way I was going to give in!  Sadly, the first week of December 2013 I felt so ill I couldn't get out of bed.  I didn't know that I wouldn't work again.  Stoke Hospital were notified and I was reduced down from nine capsules per day to three to see if my body could recover sufficiently to enable gradually increasing the dosage back to the full nine per day over the next three months.  I slowly started feeling more human again, but I had was becoming increasingly breathless when walking up slight rises, climbing stairs and doing anything out of the ordinary.  

Over the next year, I was medically retired due to additional issues with my lungs.  The fibrosis was affecting about 60% of both lungs, so exertion of any kind was having a dramatic effect on my breathing.  In 2015, after a normal six-minute walk test, my heart rate well above normal, so I was then given ambulatory oxygen to protect my heart when doing anything physical.  This was a major blow and another indication I was getting worse.  Daily life did have to change, although neither my wife nor I wanted to be a slave to this illness so we made huge efforts to be as normal as possible. We holidayed abroad (although holiday insurance had been an experience getting sensible quotes - from £150 to £2,500!) and carried on as normal, only more slowly.

My consultant referred me to the transplant team at the QE Hospital in Birmingham.  After being poked and prodded, drained of blood and X-rayed, I was told that I was still pretty good and wouldn't yet be considered yet for lung transplantation.  I was to return a year later.  Phew!  After living with IPF for three years I had learnt to adjust and cope with increasing breathlessness doing simple everyday tasks, including washing, shaving, dressing, etc.  

My wife and I have discussed the future; many tears have been shed; but we decided that we would get a "box" and put this disease and all the complications inside it and shut the lid.  We would only open it if and when required; we hoped that day would never come.  It is the only way we could continue to lead normal lives.  It's still difficult and the box pops open now and then, but we manage to shut the lid tight again.  IPF has a way of lulling you into a pretense of wellbeing and then you wake up one morning and feel as though an elephant is sitting on your chest.  This happened in late December 2015.  Initially diagnosed as pleurisy, it was actually an exacerbation, where you suddenly become very ill for no known reason.  I really struggled for the next few weeks. 

At my next visit to Stoke hospital my oxygen was increased from 2 litres to 4 litres.  My lung function dropped dramatically, but it was hoped it would gradually improve.  I was very concerned that the IPF had worsened, but another scan confirmed that no more scarring had occurred.  

My next appointment at the QE Hospital Birmingham was in February 2016 when we were told that my ability to oxygenate my blood had decreased considerably.  I was asked to attend a four-day stay in hospital to see if I needed to be put forward for a lung transplant.  We left feeling devastated - how was this happening?  We talked to our daughters to discuss how the hospital were now looking at my condition; it was a difficult time for us all.  But thankfully we are a close family and we would reserve judgement until all the testing was done.  The stay was scheduled for 1st August 2016 for four days of intensive testing.

We decided to have a super holiday in Rhodes with my daughter Kim and husband Jon and hang the expense!  We had a fabulous time and although I had to take my oxygen via a concentrator, a good time was had by all.  All good things came to an end and, arriving back home on the Friday, we were due in to Birmingham on Monday morning.  Back to earth with a bump!  

We arrived in the hospital and met the Transplant Sister who gave us an itinerary of what tests would be taken over the four days.  We were due to see the surgeon for the results at 10.30 am on the final day.  At 9.00 am I was informed that an angiogram had been requested by the Transplant team before a decision was made.  My mind was going full tilt ... what was wrong?  What had they found?  When my wife arrived at 10:00 am I was still in theatre.  When I finally returned to the ward, my daughters were waiting and frantically thinking the worst.  The surgeon and Transplant Sister went through the test results and informed us that I was a candidate for a lung transplant, single or double, depending on what was available if I got to the front of the queue.  

We were all a bit numb upon leaving the hospital.  "Bitter sweet" best describes how we felt: good that I had a chance of a transplant, but bad because I had got worse.  Although I knew that deep inside, it was still difficult to accept! 

It is now six months since I was put on the Lung Transplant list, although when attending Birmingham for my last three-month check, they informed me that I have abnormal antibodies in my blood.  More bad news - does this ever end?  It basically means that 30% of available organs would not be suitable for me.  Initially we were very disappointed, but this journey has been full of heartbreak and disappointment along the way.  But hey, I am still here kicking and fighting!  It's difficult for us all and I wish that I didn't have to put my family through these very testing times.  Without the love and support of my wonderful wife and family I would he in a very "dark and dismal place".

It is hoped that I will one day qualify for a lung transplant, but I know there are other warriors out there who are also very ill.  Whatever we can all do to encourage people to register to donate their organs must be a priority.  I believe there are over 6,000 people waiting for organs in the UK.  That's somebody's wife, husband, son, daughter - all of whom are in desperate need of an organ to live.  Do something amazing and give the gift of life!


Pete Robinson