"I have the family I always wanted": Richard's Father's Day story

Shock diagnosis

As you can imagine, to find out at 37 that you have CF is a shock, especially when you’re told that the average life expectancy of somebody with CF is around 40. My initial reaction was, “so I don’t have long left then?”



My wife and I had been trying for a baby, but it wasn’t happening naturally, and tests had shown that I didn’t have the vas deferens tube (the one that gets cut when a man has a vasectomy) and that this was a CF trait. A meeting with the CF team confirmed my diagnosis and I was told my gene types (c.3659 and c.3528), both of which are uncommon and as a result, very little is known about them.



With no known family history of CF, the conversation with my parents was interesting to say the least! I have since found out I do have one relative who has CF.

The news took some time to sink in and my wife and I had many questions: Why had my diagnosis taken so long? Will it get worse? Will it stop me from doing certain things? Will I die of CF? If we have children, will they have CF?

The CF team at Castle Hill Hospital in Hull are amazing; they realised this was a shock and did their best to explain everything and put us both at ease. My wife has also been amazing, she has been my rock throughout all of this; she always knows the right questions to ask, and when to ask them.

After the initial shock, we started to discuss what it would mean for us going forward and about how we looked after ourselves. I was a smoker and had smoked since I was about 14 (I know!). I was a big lad. I wasn’t healthy.

Lifestyle changes

I visit the CF clinic once a year for a check-up and fitness test. My lung function has gone up and down a couple of times, so I have an inhaler, and I take vitamin D to help with low levels. I have changed the way I look after myself and I stopped smoking straight away. I have lost weight, taken up cycling (which I do a lot!) and I am now probably the fittest I have ever been.



The biggest challenge was finding out that we would need to have IVF if we wanted to have children. It’s not easy at all and it can take a long time. Luckily for us we now have a wonderful cheeky little girl. She is our miracle baby, a little bundle of joy who keeps us and our dog on our toes.



I still have questions about my CF, and I think I always will. I still struggle when I go to the clinic when they ask me to describe things to them as I still don’t really know what I’m looking for.

Looking to the future

My life has changed so much since my diagnosis, mostly for the better: I look after myself better; I have the family I wanted; and I have met some great people, including the staff at Castle Hill and at CHIEF, a local charity that supports people and families living with CF. I have also raised money for Cystic Fibrosis Trust and CHIEF over the years. A group of friends and I cycled from John O'Groats to Land End, and I have done a couple of 24hr cycle challenges. Next up, I will cycle coast to coast in a day.



Although there is still no cure for CF, the new medications that are helping people to live longer and healthier lives gives me hope for the future.

My #CFTruth

There is still not enough awareness of CF and I've been asked more than once, 'How did you catch it?'. I wish more people knew that CF affects us all differently; that we all have different CF genes and different symptoms and no one experience is the 'norm'. 

We know that Father's Day can be tough for lots of people, for a variety of reasons. Your CF team may be able to provide emotional support or direct you to other sources of support.

You can also contact our Helpline on 0300 373 1000 or at [email protected] if you'd like information or support, a listening ear, or just to talk things through. 

Get in touch