The Inspiration

My wife, Samantha (Sam) Yates, passed away in April 2013. We lived in Hampshire together and waited in vain for a double lung transplant.

This is her story in her own words.

I was diagnosed with Cystic Fibrosis (CF) when I was six months old.  As a child I was in and out of hospital fairly frequently and would have regular two-weekly stints in hospital where I would receive intravenous antibiotics to fight infections.  CF didn’t cause me too many problems during my school years, and I went on to university where I trained to be a teacher.  Miraculously, I got through university without a single day off due to CF!  I met some great people there who have been so supportive of me during this tough time.  I met my husband, Luke, back in August 2002 and we have been married for nearly five years.

my lung function had halved from around 50% to 25%

I started my teaching career and had a great time and a school full of really supportive colleagues. I adored teaching and taught year 5 for 2 years. I was pretty ill at the end of my first year and was hospitalised during the summer of 2008. This was a horrific experience; my lung function had halved from around 50% to 25%. I was placed on a non-invasive ventilator (NIV) for the first week. After that admission I had to have oxygen at home which really depressed me, as it felt as though CF was beating me. I knew that a transplant was the only way that I was going to be able to breathe on my own again, but I had a tough time admitting it. I returned to teach another year at school, however, at the beginning of my third year I got another chest infection. It was at this time the doctors at the Brompton said that I should consider being assessed for a transplant, as my lung function was now 17%.

Halfway through the assessment I became incredibly unwell. I was put on the NIV and it was not clear whether I could recover from this and complete my transplant assessment. Luckily, after a couple of weeks, I was able to breathe on my own with oxygen, and could complete my transplant assessment. Whilst this was a terrible experience, it did reaffirm my desire to have transplant. Before I was reluctant to admit I needed a transplant, possibly because it made me feel as though my illness was ‘winning’, however, when the choice was almost taken away from me, I soon realised that I do want to beat CF.

I now have very limited exercise tolerance; I can just manage a flight of stairs and general pottering around the house and garden. I used to be very active; I’d jog daily, hold down a busy teaching job, partake in additional evening activities and still have energy to go out socialising at the weekends. Now walking 100 metres feels like jogging for half an hour in terms of how breathless I feel. My oxygen saturation levels also drop dramatically when I exercise, which puts more stress on my body and for prolonged periods of time this is dangerous.

I am so very grateful that there are people willing to make the selfless decision to sign the Organ Donation Register so that out of a terrible tragedy, something good may come of it.

It’s become more apparent that breathlessness is really invading my life. Routine chores are now too strenuous to manage. Whilst I’m not the biggest fan of housework it is frustrating to not be able to get on with such a mundane task! Even walking around the supermarket requires me to make regular stops to sit down to get my breath back. The doctors suggested investing in a wheelchair, so that I could keep living as normal a life as possible. Luke’s parents very kindly bought me one, which has enabled me to live a bit more of a normal life.

I was officially listed for transplant on 12th January 2010 and when the transplant co-ordinator from Harefield called me to inform me of this, it felt like I’d won the lottery, despite it only being the start of my transplant journey. Since being listed I have had two false alarms – both times the donor lungs were assessed as being unfit for transplantation. I still feel incredibly grateful to those selfless donor families who gave their consent for their loved one’s organs to be donated.

Although my lung function and health haven’t dramatically deteriorated any further, as time goes on I can feel myself becoming weaker and weaker and feeling more and more dependent on my family and my treatment.  My mum cares for me during the day – she comes down to my house at 8 am and helps me get off my NIV (which I now need to use each night) then assists with my morning routine.  She comes down again in the afternoon to do my physiotherapy and Luke takes over when he gets home from work.  To say that I feel like a burden is an understatement.  It isn’t how I imagined living as a young married couple.  I really miss my independence and the ability to be spontaneous and I cannot wait for the day that I am able to stand in front of a class and teach again!

While I live daily waiting for my call to come I try to keep as active as possible and not dwell on my situation. This is very hard, if not impossible to do at times. I am so very grateful that there are people willing to make the selfless decision to sign the Organ Donation Register so that out of a terrible tragedy, something good may come of it.  I am also in awe of the relatives of those people who, through their sorrow and heartbreak, give their consent for their loved one’s organs to be donated.

After being listed for transplant, Sam courageously decided to share her story in the hope that it would lead to an increase in the number of people who sign up to the NHS Organ Donation Register. Sam wrote regularly about her life and experiences waiting on the transplant list in her popular blog ‘The end of my tether?’ but was also interviewed for local newspapers, radio and both regional and national news. Although Sam’s transplant never came, she tirelessly campaigned for an increase in the number of organ donors. Sam spent her final months trying desperately to encourage more people to sign up to the NHS Organ Donor Register so others would not face the agonising wait she endured.

Sam advocated for organ donation, accepting that if she was willing to be an organ recipient, she must be willing to be a donor. In a final act of selflessness, she donated her corneas after she passed away. Through giving someone back their sight, Sam’s legacy lives on.

Becoming an organ donor is simple, just visit the NHS donor register, fill in your details and make sure to tell your loved ones.