Alive at 35 Still Living With Cystic Fibrosis

Alive at 35 Still Living With Cystic Fibrosis

Alive at 35 Still Living With Cystic Fibrosis

Thailand, Bangkok.

As you may have deduced from the title, I am thirty-five years of age and living with Cystic Fibrosis. As with all my blogs related to Cystic Fibrosis I give a little insight into the condition, as it is one which many people from around the world know little or nothing about. Cystic Fibrosis is a genetic incurable disease which can shorten life span and quality of life. Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In a nutshell it is a nasty, horrible illness which deeply affects sufferers and their families.

I have written numerous blogs about the subject and always look on the bright side. I have also discussed the negatives, of which there are many, but for now I want to talk about living, with survival thrown in for good measure! What is it like to confound the medical books and live beyond a life expectancy? I turned 35 years of age last June hence I am still Alive at 35 Still Living With Cystic Fibrosis.

Alive at 35 Still Living With Cystic Fibrosis Pains and Plans

Alive at 35 Still Living With Cystic Fibrosis

Check up day.

If you read any of my previous blogs about the illness you might have noticed that I wasn’t diagnosed with the condition until shortly after my seventeenth birthday. In life we can all be diagnosed with illness at any stage, but Cystic Fibrosis is usually detected much sooner. This is due to the many complexities of the disease and how it noticeably affects the human body. Already I shocked my GP and medical staff at my local hospital, but it was nothing like the shock my family and I received. I took the diagnosis in my stride and was anxious to get out of hospital to enjoy my summer holidays!

Fast forward a few days and weeks post diagnosis and the enormity of the condition began to take hold.  One of the first things I noticed was the life expectancy. 1999 wasn’t too long ago but it was before the days of omnipresent Wi Fi and widespread home internet use. Back then I referred to a leather bound encyclopedia plucked off our home book case, straight onto the “C” category.  The life expectancy printed in black and white was a real eye opener, 33 to 34 years of age back in the late 90’s.

Again as a young seventeen year old this didn’t have a major effect on me, “that’s years away” I thought to myself. By then I’ll have achieved everything I want to achieve in life so it does not bother me. Fast forward to today, September 2017 and I am sitting here tapping away on my laptop looking out at a clear blue Spanish sky as a greying thirty-five year old man!

Alive at 35 Still Living With Cystic Fibrosis

Living in Spain.

Alive at 35 Still Living With Cystic Fibrosis

So why am I writing this now instead of going outside to enjoy another beautiful day in late summer? I guess because those two digits put together, 3 and 5, mean more than I would ever have expected. Big milestones in my home country of Ireland are 18, 21, 30, 40, 50 etc. Usually these milestones are celebrated with large parties in the company of family and friends. 18 symbolising the age we can vote in Ireland, legally drink alcohol. 21 years marking your real induction into full adulthood. The birthdays ending in zero marking another decade of life passed by.

For me every birthday since 17 has been celebrated in a similar fashion. I’m not one for big parties or attention. A few drinks with friends and family is more than enough for me. Since I met my wife she has thrown me a couple of surprise parties, which were wonderful, but if I had my way I prefer a more low key affair.

Alive at 35 Still Living With Cystic Fibrosis

Salar de Uyuni, Bolivia

Alive at 35 Still Living With Cystic Fibrosis A Game of Two Halves

Each June 17th (if you want to send a birthday card!) since my diagnosis I always spend a few moments smiling and thinking about another year beating this illness. It might sound trite but I genuinely do spare a thought for the other families around the world who have said goodbye to somebody before their time. Personally I have lost perfectly healthy friends who have died tragically well before their time, not to mention a brother from serious illness and I always think what they could have been or achieved. Today as an ageing man I still cannot believe I have got here.

Alive at 35 Still Living With Cystic Fibrosis

Greece, Athens. The First Olympic Stadium.

The old saying, “life is a journey”, really does ring true and is not just an overused cliché. I now look at my life in two halves. The first seventeen years when I was just a regular kid growing up with the usual hopes for the future, finish school, travel, meet a girl, get married, have kids, buy a house spend time with the grand kids. The “new life” I then received back in June 1999 when the doctors told me I now had Cystic Fibrosis. Obviously I developed the condition since the day I was conceived. However it did not feature in my life until much later.

Alive at 35 Still Living With Cystic Fibrosis

Since the beginning of my “new life” I had to re-evaluate my existence. How I wish to live it, if of course CF allows me! Will I travel? Will I meet a girl? Do I want children? Can I have children? Do I wait until retirement until I travel and do all those things I wanted to?  If you take a look at our website you will see that the Travel part is well under way to being fully achieved (84 countries and counting!) and I was fortunate enough to meet a beautiful, kind, caring woman who would later become my wife.

Alive at 35 Still Living With Cystic Fibrosis

Together with my wife.

The children part can be a debatable topic, particularly in Catholic Ireland and Poland. As a man I have never had the urge to have children, I would cross that bridge when, or if, it came to it.  Now that I am thirty-five I feel that children just don’t fit into my life and thankfully my wife agrees. In your twenties nobody really talks much about children among friends but it’s all they seem to discuss when you get older. When old friends are becoming mothers and fathers they just naturally assume a married couple the same age should do the same.

Alive at 35 Still Living With Cystic Fibrosis

Machu Picchu, Peru

Alive at 35 Still Living With Cystic Fibrosis

I believe that my wife and I would make good parents, we are sensible, mature and up to the task a new life brings but we choose to enjoy our own company and focus on our lives and goals while we are fit and able. Personally it is hard enough taking care of myself with this condition so a child’s demands would put a major stress on my body (lack of sleep, financial pressure, huge energy reserves needed).

Added to this I would not risk the chance of passing on this illness to another human being. Us cystas and fibros are a great people, from what I have seen, but I think we can all agree we would not wish this condition on our worst enemy never mind a new born child. This illness does ruin lives and can pose major disruptions to plans whether they be meeting someone special, having children, applying for a mortgage, travelling and all the usual things most privileged adults in a “developed” world experience.

Alive at 35 Still Living With Cystic Fibrosis

Hospital check ups.

Alive at 35 Still Living With Cystic Fibrosis. Looking Forward, 35 Down How Much More to GO??

Alive at 35 Still Living With Cystic Fibrosis

Eating crickets in Myanmar, Yangon.

So what’s it like to be 35 and living with Cystic Fibrosis? Am I a fragile boy living in a bubble afraid of what’s out there and afraid of dying? Do I still save for that pension pot and focus on a career? For me I can safely say I have never planned for the future. Is this wise? Many insurance companies and banks will tell you that it is certainly not, but you only live once so taking advice from people who just want your money tells its own story. Since my diagnosis I have seen my lung function slowly decline and my prospects of being a footballer, astronaut or deep sea diver evaporate!

Alive at 35 Still Living With Cystic Fibrosis

Creon Pyramid.

On a more serious note however I have seen improved treatments and improved outlooks. The internet has given sufferers and their families a common voice and a platform to laugh, joke or cry about this illness. Treatments such as ivacaftor are the next best thing to a cure and I am fortunate to be a recipient. As a thirty-five year old I face the same issues as most other healthy, “normal” people my own age, where will I live? Where will I get enough money to eat and live etc. but who or what is normal anyway?

Alive at 35 Still Living With Cystic Fibrosis No Regrets!
Alive at 35 Still Living With Cystic Fibrosis

New Zealand, Sky Dive.

If I can give any advice to patients at 17 or any young age it is live life to the full and don’t have any regrets. Get that tattoo, travel the world, kiss that girl or boy you like (if they let you!!) and don’t worry about the future..it hasn’t happened yet! As a thirty-five year old who thought he may not get this far I have no regrets about the tattoos (I want more), the piercings, the reckless spending on alcohol, clothes and travel and the jobs I have left.

I have squeezed so much in for the last 18 years because you never know when your time is up. I have been fortunate to have only been admitted to hospital a hand full of times in the last 18 years but you never know when that luck might end! My motto is live in the now as if tomorrow doesn’t exist, it sure makes for an eventful ride!!  As always if you are a CF sufferer or family member we would love to hear your story, perhaps you have made it further down the line than me?

Alive at 35 Still Living With Cystic Fibrosis

Abu Dhabi, UAE

Alive at 35 Still Living With Cystic Fibrosis

Check out my progress via My CF Diary:

http://www.continentchasers.com/cf-diary/2017-cystic-fibrosis/

Want more proof that CF doesn’t have to be all doom and gloom?

Check out Emmah Evans From Australia.

Emmah is a mother of two children, a wife and is living with Cystic Fibrosis. While sharing her story to raise awareness and much-needed funds for Cystic Fibrosis, Emmah has spoken in front of names figures such as former US president, Bill Clinton and Super chef, Jamie Oliver. Her courage and positive attitude is infectious. From the highs to the lows – this woman is remarkable, and her story is one of a kind.

https://www.emmahevans.com.au/

Check out our Salty Stars:

http://www.continentchasers.com/salty-stars/

If you would like to donate to Cystic Fibrosis you can follow the links below:

https://www.cfireland.ie/donations/

https://www.cff.org/Get-Involved/Donate/

Alive at 35 Still Living With Cystic Fibrosis

Elephant ride, Asia.

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Alive at 35 Still Living With Cystic Fibrosis
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Alive at 35 Still Living With Cystic Fibrosis. What's it like to confound the medical books and live beyond a life expectancy? My journey with Cystic Fibrosis.
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Continent Chasers
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6 comments

  • Congrats on making it to 35 with CF. I’m 40, have CF, married, and we have two beautiful little girls. Your right about the stress part, its a huge responsibility. However, for us it was something well worth it. You don’t need to worry about passing CF on to others so long as your spouse isn’t a carrier. You probably know that already, but your blog wasn’t really clear on that point.

    Best of luck going forward and many more years! Take care.

    • Hi Radie thank you so much for your comment. We are aware and have been tested and the chances of passing on the gene are about 1 in 200 in our case, but we still choose not to have children for now for many reasons. Congratulations to you and delighted to hear you are living life to the full and have two beautiful girls. For now our goal is to travel the world while we are young and “relatively healthy” in my case! Check out the rest of our blogs, would love to hear your opinions and if you have a story we would love to hear from you.
      Continued good health and best wishes to all your family.
      Take Care
      Continent Chasers.

  • I love reading about your travels and positive outlook. I know this was published a little while ago, but congrats on reaching 35! I’m a 24-year-old with Cystic Fibrosis and I never let it stand in my way.

    Do you have any CF related tattoos? I’m searching for inspiration to add more to my arm. Most of my searches end up too depressing and that’s just not my style.

    • Thank you so much Ari for the kind words. It’s great to hear that you don’t let the condition get you down. It can be difficult but the mind can be just as important as the body in keeping well. I do have a CF related tattoo. I have a full sleeve on my right arm which is travel and CF related. I have various images of world places that are special to me and a map of the world. At the top is a rose with 65 written around it to represent cystic fibrosis. I have DNA structure with thorns around it and a lung going across my shoulder to also signify it. There is a biohazard symbol on my chest as the symbol is always facing me when I go to the hospital to give blood. I will probably get more in the future but not sure what as of yet.

      A tattoo has to represent your personal style, it is good to get inspiration from others and the web but it needs to be your design. Just put together images that mean something to you and discuss your ideas with a good tattooist. They can then bring your creation to life to give you a design you will love. I wrote a blog before about tattoos and travelling which you can check out here. https://www.continentchasers.com/tattoos-and-travelling-get-under-your-skin/

      Thanks again for taking the time to write, please feel free to make more contributions and if you do get a tattoo send on some images via social media. Keep staying strong and enjoy everyday. Best of health to you!

    • I am 31 years old and will be 32 on August 21st living with Cystic Fibrosis. I’m actually in the hospital at Duke University in North Carolina for a tune-up as we speak. I have a CF related tattoo. i have 14 tattoos. And I’m thinking about getting another one.

      • Hi Kaydi,
        Thanks for the comment. I do hope you are feeling better now and that you are out of hospital? 14 Tattoos, very nice. They are very addictive. I have a full arm sleeve and a smaller one on my other arm. I will certainly get some more done, hopefully by the end of the year. Best wishes to you and best of health in the future. Good luck with the tattoo and thanks for reading the article.

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