CF Week. Highs and lows

Living with Cystic Fibrosis (CF), the highs and lows

logo that says cystic fibrosis is beatableIt’s day 5 of CF Week. And, far from running out of steam, I feel like I’m getting into my stride.

But rather than flood the blogosphere with my ramblings about 50 shades of mucus, poo diaries and hospital food reviews, I’m going to say a few words about some of the highs and lows of life with CF.

And, partly, because I want to end on a positive note, I’m going to start with the lows.

baby with line in and dummy in hospital sleepingLow number one, the diagnosis. The doctors at Tooting were amazing. (A fact I didn’t appreciate fully at the time, when all I wanted to do was get home). But there’s no easy way to break the news. Or to distill the brutal facts of CF.

CF is a genetic condition that primarily affects the lungs and digestive system. In CF, the gene controlling the transfer of fluid lining the airways and other organs doesn’t work properly. Mucus builds up, creating an ideal breeding ground for bacteria and infection. It can block the bowels (hence the need for J’s operation when he was three days old).

However, repeated chest infections is the most common complication of CF. Over time, the lungs become damaged and scarred.

I remember asking whether CF was terminal (my words). And that was when I first heard the phrase, life-limiting. (It’s become a turn of phrase I hate. With or without CF, life is as limiting as you make it. To a large extent. And, however, the doctors phrased it, Life-limiting was just a more gentle way of saying my baby had little chance of seeing out his allotted three score years and ten.)

At the time, the average life expectancy for somebody with CF was 31 years. That hit me hard. When you’re a kid, 30 may seem like forever. But I was looking at it from the other end, an elderly prima gravida.

J would need to take a plethora of medication, every day, for the rest of his life. He’d need regular hospital treatment, but nobody could tell me how severely CF would affect him.

With hindsight, I can understand how every case of CF is  different. I can see that treatment, a child’s overall genetic make-up, his environment and pot luck can play a big part in how the disease progresses. But at the time all I wanted (or thought I wanted) was some certainty. So I googled CF.

(If I could give parents of a newly diagnosed child one piece of advice, it would be Don’t google randomly. Go to the CF Trust’s web site, talk to other CF parents instead. )

True, there’s a lot of information about CF out there, but much of it is alarmist and out-of-date. I soon became overwhelmed by the hopelessness of it all, and not just CF. I started reading about other conditions and diseases. Sometimes OH would remind me, there are worse things than CF. And there are, but this did little to reassure me at the time. It just became further evidence of how unfair and uncaring the world was. I lost faith, for a while.

baby in flopping sun hat on backpack smilingBut CF has a way of catching you out. And the casual kindness of strangers restored some type of faith.

Collecting money for the CF Trust outside Tescos, a mother pushed some notes into my tin. She told me about her baby son. After lots of tests, she discovered he didn’t have CF. But she described something much deeper than relief. It was heart-break and elation, cojoined. For a while, we had shared the same journey. She understood how I felt. And, when I wished her well, I really meant it.

We’ve seen too, the NHS at its best. The nurses and doctors treating Boy have so often gone the extra mile. And we’ve met some wonderful people through CF, other parents, carers, people working to find a cure. As OH puts it, it’s a great club, but I’d still rather not be a member.

Above everything, CF has made me more aware of how precious life is. I will never take good health for granted again. Everyday things take on a new poignancy, the birthday party celebrated becomes all the more special because of the one you missed.

In many cases, the highs and the lows become inextricably linked. For example, when Boy was one-year old,  he grew a bacteria called pseudomonas. We were gutted. Without getting too technical, Pseudomonas is a CF baddy that can colonise the lungs. (I was still in my google phase at that point. I read a lot about pseudomonas and morbidity).

It was another big low, three months of oral ciprofloxin (which gave J loose stools and meant we had to smother him in Factor 50 every time he went out in the sun) and nebulised Colymycin. I held a mask over J’s face twice a day, trying to distract him with CBeebies, hoping he’d take in enough of the drug to fight the infection in his lungs. And, just as importantly, I hoped that he wouldn’t hold the white lies and occasional headlock against me.

But we were fortunate. Boy’s swab results indicated that he’d kicked the bug out of his system. High-fives all around.

giggling baby in car seatFingers-crossed, it’s a scenario we’ve repeated, with subtle and not-so-subtle variations, several times over the years. And each time we get a good result, or see an improvement in Boy’s lung function, it’s a cause for real celebration. If I was feeling poetic, I’d call it euphoria. It reminds me of how I felt eight years ago, in my pre-CF days, when I first saw that thin blue line appear, and Boy was just a hope for the future.

With CF, I’ve come to live in the moment much more, to appreciate the little things. I strive (not always successfully) to focus on the positive. I don’t google J’s symptoms anymore. I try and use the internet more purposefully, to visit the parents’ forum on Facebook and at the CF Trust’s website, to read about people with CF who are making a difference, people like Trunki inventor, Rob Law, and singer, Bianca Nichols.

And, above all, I hope. I believe that we can beat CF. It may not be tomorrow. I’d like to believe it will be in time for Boy to benefit from it. There are no guarantees. However, if the funding continues, the outlook is promising.

wish handmade jewellryPlease do something to make a difference. Join the Organ Donor Register. (One in three people with CF on the transplant list die waiting).

Or buy one of the lovely bracelets Wish Handmade Jewellery have designed. 25% of proceeds from the CF range go to the CF Trust.

Lots of us aren’t flush with money at the moment, but why not support a good cause and treat yourself, or a loved one. It’s a win-win.

About sarah

Old enough to know better, still young enough not to care. Property lawyer, sometime developer, writer and mother, coffee lover and cat-napper. I blog about life as a mum in North Wilts.
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11 Responses to CF Week. Highs and lows

  1. I think it’s great how you ended with the positive stuff on this post. It doesn’t take away from the lows you face but it’s a good example of how important it is to keep your head up. I will also be buying one of those bracelets at the end of the month (wait…it IS the end of the month, win-win-win!)

    Hopping over from #PoCoLo

    • sarah says:

      Thanks Jess. That’s lovely. I hope I didn’t make it too down, didn’t want to distract from condition, but there is an awful lot to be positive about too. Can’t believe it’s nearly July.

  2. Jaime Oliver says:

    Sarah this is so informative and so heartfelt. Thank you for sharing your CF posts this week. and thanks for linking up this one today with #PoCoLo xx

  3. Pinkoddy says:

    This is such an informative post, I have shared on Google+ hopefully then when people google for information this blog will come up on top.

    • sarah says:

      Thanks that and the tweet mean so much, just trying to raise awareness and it’s not always the mot obvious or media friendly condition!

  4. It was so lovely to meet you at Britmums, albeit very briefly. (Wasn’t it a rushed weekend?) This is such a lovely post. From the heart, gentle, honest. My brother and I have A1ATD which results in lung damage too. We have to stay positive; like you say funding for research is crucial and I believe the future holds much promise. Wish we’d had more time to talk. Perhaps next year? x

    • sarah says:

      Thanks Emma for your comments. Nice to meet you at Britmums too, although I agree it was very rushed and left me totally shell-shocked and exhausted! I know very little about A1ATD, although as you say, appears much to be positive about, particularly with gene therapy and stem cell research. From what I can see (and I still have to get my head around this, being a non-scientist) it looks like similar faulty gene to the CF transporter one. Would be nice to meet at next years’. x

  5. Orli D says:

    I know your post ended on a positive note, but it still made me cry…
    Mine doesn’t have CF, but it doesn’t matter I think, because how I see it, we all share a bond, to a certain extant. I felt every word you wrote going straight to my heart. I wish you all that you will beat CF, and am sending you a virtual hug. I know it’s not much, but it’s all I have to give…

  6. Pingback: Life’s amazing – pass it on |

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