My name is Jacqui Mansell and I am a little older than most CF patients.

I am in fact 56! I was lucky enough to get a heart and lung transplant in September 1999.  Let me explain…

I was ok until I was 21 when I started getting pain in my lungs and chest infections.  I was very lucky and had my two children when I was still well enough to play with them and look after them properly.  I only started going downhill when I was about 40 and infections became closer together and more serious.  I was treated for Bronchiectasis, and as it is so similar to CF treatment, I stayed as well as I would have done I think, had the diagnosis come earlier.  It did not come, in fact, until my chest clinic doc, who thought that my lungs were near their end, referred me in 1996 for transplant.

I went for assessment to Papworth, who, after clever detective work found that I had a rare abnormal gene, plus one of the most usual CF genes combining to produce this type of late onset CF.  When I see most of my fellow patients being so young and having these troubles, and more, I know I have been very lucky indeed.

I had a reasonable year following that, by now 1997, but by the end of that year had to get a disabled badge for parking and could just about walk from the car to a shop without gasping for breath.  It was quite alarming how quickly it progressed and then the last straw – Christmas 1998 I got ‘flu and my lungs just said enough now!  I spent from then until May 1999, in the local hospital CF ward with just a few days at home.  They thought I needed to be reassessed for transplant urgently.

Papworth agreed I could go back and I was transferred to the CF Unit there.  I continued to get worse and was on oxygen 24/7, and getting thinner and weaker all the time.  Eventually I was put on a Nippy to help me breathe and get some rest.  Some days I was even afraid to take off the Nippy mask, but I was supported through all this by my fantastic husband Howard, and my children Katharine and Leo, plus good friends and I count the staff amongst those – they were great and got me through.

My call came about 5pm one night in September when I had actually been well enough to visit home for a few days.  I didn’t expect it to happen having been warned to expect false alarms (I had been waiting since June).  I got to hospital about 8.30pm and about 10pm we were told it could go ahead. I felt very calm because I knew I could not carry on much longer without it.  My first memories when I woke up were very weird.  It is so surreal in ICU with the staff in scrubs and machines whirring and sighing; I wasn’t sure I was alive!  I was though, and it was a great feeling.  I could breathe (and cough) with my new lungs!  Down to the gym two days later for the gentlest of exercise and then on to post-surgical ward. Unfortunately, when I was there I developed a blockage of the bowel (CF again!) and had to go back to surgery.  It took me a bit longer to get over that but I eventually went home about 6 weeks later – longer than most patients because I had been so ill before the transplant, plus the second operation.

I got steadily stronger and fitter and today 4 years and bit on, and I still feel so fortunate every day – I will never take it for granted.  I feel it was a small miracle because we did not expect me to be here even at the end of 1999.  My donor and her family’s generosity are never far from my thoughts,

I have met some inspirational people through CF and transplant experiences.  The courage of my fellow patients and their families is enormous and I feel very sad when people I know don’t get their transplants, or do, and they do not do well.  The best piece of advice I was given during that very bad/very good year was to take a day it at a time.  Not a new thought, I know, but well worth remembering and it does help not to think too far ahead.

I work now as a volunteer for two transplant charities TIME (Transplants in Mind) and Transplant Support Network to try and give something back, by helping raise donor awareness.  I want everyone who needs a transplant to have that chance.

I am a keen (but still novice) birdwatcher and it is wonderful to be able to walk around the reserves now.  I also go to the gym two or three times a week and went back to work with my husband, who is a video/conference producer.  I like to travel as much as possible, for any reason anywhere and anytime.

Nothing is boring – I am just enjoying life for as long as possible!

February 2004