Jonathan Farrow: on life at 60, living with Cystic Fibrosis and striving for happiness

By Jonathan Furrow 

My name is Jonathan Farrow. I live in Kent in the United Kingdom with my Partner Donna and her son who has autism, Joshua. 

I was born in Kent and have lived here all my life. I was born in July 1963, so that makes me… um… yes, that’s right 60 years old!    

Diagnosis  

Healthwise, I was diagnosed at 3 months old, which back in 1963 was pretty good going as not much was known about CF back then. Fortunately, my parent’s GP had just been on a course where they were talking about this new genetic chest condition called cystic fibrosis that had recently been identified. The GP recognised the symptoms in me, and I was sent to Great Ormond Street Children’s Hospital for further tests and clarification of the initial diagnosis. Now back then there simply wasn’t a test for CF, sweat testing hadn’t been developed yet and they had to go only by symptomatic observations. Only many years later did I do a sweat test that proved positive for CF. So, in essence, my early childhood was living with this new genetic chest illness called cystic fibrosis and a “Let’s see what tomorrow brings” basis.   

So, in case you are wondering, I am both Delta 508, having had a definitive genetic test now. I am currently 6’1” tall (that’s 185cm tall in new money). I weigh 95 kg (15 Stone) and have both my original lungs. My FEV1 = 1.58 and my FVC is 3.11 as of November 2023.  

The main issue I had at birth and caused concern was I didn’t retain my birth weight. My chest was clear at this point. I can only imagine how hard it must have been for my mum & dad to hear about this terrible genetic condition their only son had (I had an older sister by 6 years who did not have CF but sadly, she died from cancer 6 years ago now). Of course, the prognosis was very poor for CF people back in 1963. My parents were basically told to take me home and make the best they could of it but I was not expected to live beyond about 5 or 6 years old.   

Childhood  

However, my parents were never ones to give up easily… so they did the best they could to give me a normal life. They helped start the Cystic Fibrosis Charity here in the UK, ran local CF help groups (very few CF children back then in the local communities), and did jumble sales and charity events to help raise funds for the charity. Much of my childhood was spent at jumble sales on our CF charity table, selling diaries, pens and pencils to raise funds for the newly formed CF Charity Trust. I remember at these events we used to play a game called ‘CF Bingo’… We would guess how many times an old lady or gent would come up to the stand in the day and tell us how much they sympathised as they suffered with Cystic Fibrosis in their shoulder or hip or knee… haha.  

The days/months/years passed. My health was fortunately relatively stable. My main issues when younger were mainly digestive-based ones. My chest stayed very clear until my teens but more on that later.   

Back then the main treatment to help with digestive issues was a medication called Cotazym. For those not familiar with it, it is a powder you sprinkle on food to add the digestive enzymes we CF people are missing to aid in the digestive process. Most in the CF world would take Creon now but this was its forerunner as it were. Now something you need to know about Cotazym…first it smells horrible, second when you sprinkle it on your food it starts to work immediately!… so you learn to eat fast, or your meal ends up as just soup pretty damn quickly! So even to this day, even though the days of using Cotazym are long gone I still eat very fast… old habits die hard. Incidentally, as we take a lot of Creon with meals when you add these to all the other tablets we take, I calculate it’s about 20,000 tablets a year! Let’s hope I don’t develop an allergy to gelatine any time soon.  

Until I was 15, I used to go up to Great Ormond Street Hospital once every 2 months to see the team of CF specialists there. It was a strange time for me because even though I knew I had this thing called CF inside me and had a lot of digestive issues; my chest was very clear at this time. When we went to the hospital on our regular check-ups, I sadly got to see some very sick CF children. It was very confusing for me as I didn’t feel sick at all. I looked thin but other than that I played and ran and enjoyed a pretty normal childhood. Sadly, some of my CF childhood friends did die at this time. Remember, this was a time when all CF children could mix freely together. It was a confusing time but my parents had instilled in me a fighting mentality, so I just tried to put any thoughts of mortality to the back of my mind (as I still try to do to this very day).  

In truth, I have spent my entire life with the medical profession telling me I don’t have long to live. When I was born it was said I won’t live past 5 or 6. Then when I was 7, they told my parents he probably wouldn’t live past 10 or 11, and then at 12, he wouldn’t live past his late teens… I think by the time I was 20 they just gave up making predictions on me… haha.   

So, I had a normal childhood really. Yes, there were issues to contend with, but we just dealt with them one by one as a family as you do. I went to a normal school and had the same education my other fellow children did. I got the usual qualifications at school but never considered going to university. No, not on health grounds but mainly because I wasn’t really clever enough and besides, I wanted to go out to work and earn a wage.  

At this age, I truly didn’t have any doubts about what I wanted to do and achieve in life. In my mind, there were no limitations. I started work at the age of 15 in London in 1979 as an apprentice modelmaker. I had always had a love of Modelmaking, and my dad had found out you could do this as a career… happy days! Now in hindsight, modelmaking wasn’t probably the best job to go into as there are lots of chemicals and dust in a modelmaking workshop, but then, remember at this point my parents had been told I probably wouldn’t have lived past 20 so I guess they just thought, let me go and do what I loved for as long as I could. Very wise, mum and dad.   

Lifestyle  

So fast forward 44 years later… I have just sold the modelmaking company I formed in 1990 Model Technology & Associates Ltd. (see www.model-technology.co.uk if interested in what I did). I had 14 modelmakers working for me and we turned over a rough £ ½ million each year as a company. So, I guess it wasn’t such a bad decision afterall?   

I was married for 33 years but divorced now. I now live with my new partner Donna and her son Joshua, who has autism. He is 22. I was unable to have children of my own as CF males generally have issues in this area due to a missing or blocked Vas Deference. So as CF men, we are not sterile, just infertile because the sperm we produce just can’t leave our bodies. In fact, it can be this exact issue that leads to a CF diagnosis in some men who have very mild CF symptoms. There are operations that can help CF males have their own genetic children now, which is great, but these procedures were not available to me when they would have been relevant in my life. It is a great sadness to me not having my own genetic children in my life I must say, but Joshua more than makes up for that every day.  

My mother and father were a massive influence in my life. They had me later in life as my dad was 43 when they had me. I was a bit of a surprise I think, as the doctors had told my mum she definitely wouldn’t be able to have any more children after my sister was born 6 years earlier. Then along I came… my dad was an ex-RAF man who fought in the Burma campaign flying DC3s in WW2. My mum was a clothes designer until the war came along, and then worked in the Navy architect’s office during the war years. I only mention this not only because I loved and respected my parents but because I think this helped form their outlook on dealing with a child with CF. They had a never give up spirit and a “Let’s just get on with it,” attitude, as many did who lived through WW2.   

CF Struggles  

My chest started to deteriorate in my late teens. I had my first set of IV antibiotics in 1986 when I was 23. I have been pseudomonas positive since 1988. Never Cepacia positive though. I used to cultivate Streptococcus too but have been clear of this for some time now.   

My worst chest episode came in 2003 when I developed pneumonia in my right lung. This did nearly kill me at the time I must say. It has left my top right lung completely destroyed now, sadly. It took me 3 hard years of going to the gym 3 times a week to get back to any sense of normality again after this. The doctors told me at the time of my pneumonia diagnosis I would need a lung transplant within 6 months because of it. Well, not being one to take bad news like that lightly, I decided to do the best I could to stop this. And I did thankfully, to this day at least. To be fair my consultant was truly amazed I recovered to the extent I did, he said in his experience it was unheard of! That would be down to the wonderful gift my parents gave me of never giving up and a very strong fighting spirit. When I walked into the hospital with pneumonia, they said my blood saturation levels were the same as somebody standing on the top of Everest with no oxygen. Yet I had happily walked into the hospital just thinking it was another chest infection that would probably just need a course of IVs. It just goes to show that even when you live with a long-term chest condition, you can’t really tell how good or bad it is on any given day.   

Life Today  

So how is my life at 60 with CF today? I have to say and not tempting fate here… it’s pretty good. My lung function is stable. I am on the new CF modulators now which are a great help. My lungs are still quite damaged, and I do get out of breath quite quickly by doing anything aerobic, but it’s a good life full of fun adventures. Living with a lad of 22 who is autistic sure does keep you on your toes. I must tell you that Joshua (he is 22 but has the mental age of a 7-year-old) has the purest soul of any human being I have ever met.  

I have to say living with a serious incurable genetic condition like CF that the medical profession keeps telling you will probably kill you off at any moment (like the sword of Damocles hanging over you), does change your thought process and your decision-making choices on everything to be fair. I never second-guess my choices in life. I am proactive in all areas. Those who know me say I am very driven. I have lived my entire life knowing that tomorrow is not promised to me (or to any of us in truth). Having CF has made me truly aware of just how precious life is and that every single day is a gift… it’s why they call it ‘The present,’ after all.  

I seek out adventure wherever I can. I never let things defeat me. EVER! I have learned and often the hard way, that some things I do are not good for me, but I work with them and adapt them to find a way. For instance, I am a fully qualified archery coach now, I have run 6 companies in my time, and I run a supercar club having owned 4 Ferraris along the way. I even do… wait for it… gladiator fighting too with my Roman re-enactment group. You just must enjoy what you can whenever you can. Seize life… you get one go at this… make the most of it as it is such a precious gift. You know there are 7 days in the week… ‘someday’ isn’t one of them! I never wanted to be that guy that at the end of their life, said I wish I had done this, or I wish I had done that… I want to be that guy that goes screaming over the line totally wrecked and saying, “Whorrrr, what ride!”  

Inspiration  

I guess life is what you make of it at the end of the day. Perspective is everything. Some men look down out of their prisons and see the dirt others look up and see the stars. Time is limited to all of us you just have to decide what best to do with what you are given. I didn’t choose this life with CF but it was the one I was given and so I have just tried to make the best of it that I can. As they say, if in life you are given lemons… then make lemonade.   

I have seen many friends die with CF, it’s never fair or right. They all had hopes and aspirations in life, but had it sadly cut short. Life is seldom fair or just. In total truth, I can’t tell you why I have lived to the age of 60 with CF and others have not. Many have had the same Delta 508 mutation of CF I have and complied with their treatments but still succumbed to CF far too early in the end. It seems to be a total lottery I think, but then maybe that’s life for everyone in truth. The new CF modulators will make a big difference now if you are lucky enough to be born in a place that can afford them. Life isn’t fair… but that doesn’t mean you can’t find happiness and joy in it. Lots of things in life aren’t fair. It’s not fair for instance that if I eat chocolate, I get fat… but guess what… haha.  

So, in closing, should you follow my advice… nahh, you are quite capable of making your own decisions in this world. All I can tell you though is I love my life. Every single second of it! And I wish you all the most happiness…