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📘Define: Cystic Fibrosis📘⠀⠀⠀⠀⠀⠀⠀⠀⠀ Cystic fibrosis (CF) is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections.⠀⠀⠀⠀⠀⠀⠀⠀⠀ Post double lung transplant although a patient may no longer have CF lungs the rest of their organs are still affected by CF and the issues and problems related to these other elements remain.⠀⠀⠀⠀⠀⠀⠀⠀⠀ 💛⠀⠀⠀⠀⠀⠀⠀⠀⠀ This week marks the start of #cysticfibrosisweek in the UK. I’ll be popping some stuff up on here over the week, and feel free to ask any questions, but if CF isn’t something you know much about why not spend 5 minutes browsing the #. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I know personally from my little bubble CF can seem like something obviously everyone understands but I know this isn’t realistically the case. I also know there are a hell of a lot of awareness weeks which probably mean a lot to those involved but sometimes get lost in the noise of life for everyone else. But behind every person over the next week posting until the # their is a story, a person and an individual experience and maybe from taking a look at a few little squares you might find out something you didn’t know 💛

Thanks for, as pictured, letting me crash your honey moon almost 30 years ago, and then for every plan edited around life and all it has thrown at us since then. Thanks for fighting my corner, holding my hand and everything in between. Happy Father’s Day to my dad and all dads 💙

Everything in moderation. Including chips 🍟 on the sofa 🛋 - happy weekend everyone 💛

Ice? ❄️Lemon? 🍋 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ The reality is when your immune suppressed the answer should always be ‘NO’ but how often do you even get asked?! Or not realise until it’s too late?Alarmingly garnishes and ice can be a breeding ground for bacteria 🦠 in bars or restaurants & maybe surprisingly the stats are often even worse when these items are handled with tongs or scoops...⠀⠀⠀⠀⠀⠀⠀⠀⠀ Research in late 2017 showed that when hands ✋🏼were contaminated with E. coli the bacteria were transferred to wet lemons and ice 100 per cent of the time.⠀⠀⠀⠀⠀⠀⠀⠀⠀ These worrying findings are consistent with a previous study published in the Journal of Environmental Health in 2007 which found that almost 70 per cent of lemon slices used in drinks from 21 restaurants were carrying some sort of microbial growth, including 25 different microbial species. And it’s even worse for ice with up to 67 per cent of bacteria being transferred by hands and 83 per cent from scoops. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ But what does this mean? For many people with healthy immune systems it’s a bit gross but generally manageable, their body’s are much more ready to fight off any nasties but for someone who’s immune suppressed these unknown bacteria could cause a whole lot of trouble⠀⠀⠀⠀⠀⠀⠀⠀⠀ So - avoid garnishes, buy products from a sealed bottle if possible & make sure you are drinking somewhere you can (as much as possible) trust their hygiene practices 🍾🥂🍷

Yesterday’s post by @mother_pukka about the realities of flexible working (in a response to a DREADFULLY conceived video partnership between ElleUK and Fiat) really struck home.⠀⠀⠀⠀⠀⠀⠀⠀⠀ I often tell people I am lucky that I had a job to return to post transplant & this is something that I still abide by... but it definitely hasn’t been plain sailing. I have to be a little careful about what I write as sadly the issue is still ongoing but a few of the things I have experienced in the last 2.5 years have shown me just how ill prepared work places are for the need to be flexible and supportive:⠀⠀⠀⠀⠀⠀⠀⠀⠀ - I returned on a phased return and was told this would include continued support from external health assessors. I had one appointment and then never heard from them again⠀⠀⠀⠀⠀⠀⠀⠀⠀ - I have been paid wrong EVERY month in the last year I have been back at work, and over multiple other months during my sick leave.⠀⠀⠀⠀⠀⠀⠀⠀⠀ - Subsequently this has disrupted other payments I should have received & meant I have incurred ones I shouldn’t have ⠀⠀⠀⠀⠀⠀⠀⠀⠀ - I was not told on multiple occasions of the many changes that would occur during my period off and on my return. In fact I got no HR support at all, despite seeking it, for the first 2 years...⠀⠀⠀⠀⠀⠀⠀⠀⠀ Yet despite all this I have to be grateful because the reality is I would (and have) really struggled to even be considered for other jobs in the same profession or at the same level.⠀⠀⠀⠀⠀⠀⠀⠀⠀ Jobs I know I would have at least got interviews for or am probably over qualified for I simply haven’t heard back from. Requests for consideration of flexible or part time hours and the possibility of working from home have killed a discussion around opportunities straight away.⠀⠀⠀⠀⠀⠀⠀⠀⠀ Now I’m not saying I should have got these jobs I applied for or that I was the best candidate but what I am saying is that in 2019, in workplaces billed as ‘modern’ and ‘forward thinking’, I’m not even getting the look in I would have done pre op when I used to hide and lie about my health and my needs and it’s not ok!

Kale is definitely a newish addition to our every week eating...and maybe I’m late to the party but I am honesty completely sold. Steamed quickly in a little water and lemon juice with a drizzle of oil and seasoned it is a great way to add some greens to meals and makes me feel like some kind of health guru in the process! I’ve even used it as an alternative to carbs when I want a lighter lunch... Kale is among the most nutrient dense foods on the planet, it’s loaded up with anti oxidants, is an excellent source of vitamins and has even been shown to lower cholesterol So - how do you eat yours?

Today I officially committed to what just a few weeks ago seemed just a pipe dream. On Sunday 12th April 2020 I intend to cycle from @royalpapworth to the Royal Brompton Hospital in London, the two hospitals that saved my life. The ride, in memory of my donor, will I hope raise some awareness around organ donation as well as some money for these two amazing hospitals. The ride, around 100km, is going to be no mean feat considering pre transplant I couldn’t even walk across a room without oxygen but I hope will be a celebration of just how much you can achieve post transplant. @townsends_light_blue in Cambridge have incredibly generously lent me a bike for the ride (and the essential training before it) - without them the idea would likely have remained a pipe dream so I would like to say a huge THANK YOU to them. So, if you want to find out more (or get involved) I’ve set up a just giving page which will run until the event or you can check out more info on my website. 🚴🏻‍♀️🚴🏻‍♀️🚴🏻‍♀️🚴🏻‍♀️🚴🏻‍♀️🚴🏻‍♀️🚴🏻‍♀️🚴🏻‍♀️

☀️COMPETITON☀️⠀⠀⠀⠀⠀⠀⠀⠀⠀ While the weather being thrown at us across the UK is incredibly confusing at the moment I am determined to get on with summer...lighter evenings, holidays, alfresco dining and more. If you didn’t know ‪next Friday‬ kicks off the official UK Picnic Week and I for one can’t wait to pack my hamper and find a patch of sunshine in the park!⠀⠀⠀⠀⠀⠀⠀⠀⠀ Incredibly kindly @luscombedrinks have offered to help make 4 lucky winners picnics just that little bit special with a gift box containing four of their deliciously fruity soft drinks – what more of an excuse do you need to find the picnic blanket and round up some friends or family?!⠀⠀⠀⠀⠀⠀⠀⠀⠀ All you need to do is:⠀⠀⠀⠀⠀⠀⠀⠀⠀ 💜Make sure you’re following @nowwhatcanieat. 💛Follow @luscombedrinks. ❤️Like this post and let us know where you would have your dream picnic and who you might share it with by giving them a tag. *Competition will close ‪at 11.59pm on the 17th June‬ and the winner, picked using a random generator, announced the next day*⠀⠀⠀⠀⠀⠀⠀⠀⠀ *Winners will have 24 hours to provide their details for delivery of the prize* *UK entries only this time I’m afraid!* #ad - the team at Luscombe kindly gifted me some product and allowed me to run this competition

Sometimes it’s all about trying something new, a variety of tastes or a recipe to follow & other times it’s about food that can give you a great big hug from the inside and make it all okay...or at least a little bit better!⠀⠀⠀⠀⠀⠀⠀⠀⠀ What’s yours?!⠀⠀⠀⠀⠀⠀⠀⠀⠀ *no panic - no disaster this end, just a big bowl of yumminess for you to drool over

Fresh herbs are something I love having in the house - they are such an easy way to lift a dish or add another layer of flavour but how many times in reality do you have them in?! Still looking fresh and not sad or wilted with a few squishy ones at the bottom of the pack?!⠀⠀⠀⠀⠀⠀⠀⠀⠀ In summer it gets a bit easier if you have somewhere you can grow your own herbs 👩🏻‍🌾 but even then you can’t be guaranteed they will stay pest 🦗 free or live through our unpredictable weather...🌧 .Cue this little guy from @coleandmason - I have to be completely honest I wasn’t 100% convinced when 🧔🏻 first got it (sorry brother of 🧔🏻) but I’m a complete convert. You can shove 3/4 pots of herbs in here, fill the bottom with water and then forget about it for a week using the herbs as you like but otherwise not worrying, and it’s as simple as topping it up with water every now and again... not #spon or #ad just one of my favourite things in our kitchen

Pre transplant you are told transplant is not a cure. It simply swaps one lot of symptoms, problems, concerns and possible complications for others 🗂.⠀⠀⠀⠀⠀⠀⠀⠀⠀ Obviously when facing death while you listen to these warnings it’s not going to stop you signing those forms and hoping for that second chance and only now, two years out, is this statement start to make a little more sense.⠀⠀⠀⠀⠀⠀⠀⠀⠀ The issues I’m facing currently might not be life and death, and while that’s not to say this won’t be the case in the future, I know I am incredibly lucky to be at a point where currently I can sweat the small stuff the problem is I find myself increasingly doing this...⠀⠀⠀⠀⠀⠀⠀⠀⠀ Worrying about, to name two of the key things, steroid moon face 🌝and ongoing hair loss 🙆🏻‍♀️. While these worries might sound stupid considering I could, had circumstances at various points gone differently, not be here at all the hard part is I feel great health wise 💪🏼 yet mentally 🧠these things hold me back from replicating this and I can do nothing about them...⠀⠀⠀⠀⠀⠀⠀⠀⠀ Anyone else?!

Do you cook what you can’t eat? I have to admit I don’t often - not because of objection but because of convenience! 📸 - a rare steak in our household for 🧔🏻 after @fieldandflower kindly sent it as part of our meat delivery box and it looked too good to do anything but cook it simply, and little, in a pan with butter

As a transplant/CF patient as well as food we ‘Eat’ a whole load of tablets including for me:⠀⠀⠀⠀⠀⠀⠀⠀⠀ Vitamins 💊⠀⠀⠀⠀⠀⠀⠀⠀⠀ Although I no longer have CF lungs the rest of my body is still in many ways e⠀⠀⠀⠀⠀⠀⠀⠀⠀ affected by CF. I’ve talked before about the tablets I take to help digest my food. One of the other issues caused by the pancreatic deficiency that many people with CF struggle with is a reduced ability to absorb vital vitamins from foods as much as others. Because of this top ups are often needed of multiple vitamins and regular blood tests ensure we are getting what we need to avoid this becoming an issue as much as possible.⠀⠀⠀⠀⠀⠀⠀⠀⠀ These vitamins can vary from patient to patient but often include a combination of calcium, iron and zinc as well as vitamins A, D, E and K...I will pop posts up over the following weeks highlighting their individual benefits

Ive talked before about how I would like to eat more fish...but in reality does it ever taste as good as when you’re by the sea and it’s super fresh?! 🌊 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ The answer is probably not...and as someone who is careful about what they eat, and even more careful about what they order when out, fish is something I am extra cautious of... the way I tend to deal with that eating out is to eat it when I’m by the coast, or in a restaurant which focuses on fish,⠀⠀⠀⠀⠀⠀⠀⠀⠀ but not otherwise...this way the risk that the fish isn’t fresh or at its best is greatly reduced, the turn over of product is likely to be higher and the chefs the experts and so therefor the risk of my getting sick eating it is reduced too...⠀⠀⠀⠀⠀⠀⠀⠀⠀ At home it’s a little easier, if I don’t eat the day I buy it goes in the freezer and is defrosted thoroughly before I cook it. When it’s cooked it’s cooked well and eaten hot out of the oven or pan 👌🏼⠀⠀⠀⠀⠀⠀⠀⠀⠀ 📷 - a delicious salmon filet from @fieldandfarm with some cous cous...a simple healthy lunch perfect now the summer seems to finally be here!

When your friend who doesn’t like fruit isn’t coming to the lunch party so you can be extra extra with the 🍓s on the cake you make (yesterday)

So the month (+ 1 day) of #nwciecftakeover ‘s is done. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Firstly, I would like to thank all those involved who took over the channel and shared their lives with my followers for a few hours...⠀⠀⠀⠀⠀⠀⠀⠀⠀ Over the month we had participants from multiple countries and continents, people pre and post transplant and with very different stories to share. I hope it was interesting and informative and maybe comforting for others with CF to see what other people are going through.⠀⠀⠀⠀⠀⠀⠀⠀⠀ Thanks too to the people who engaged with each of the takeovers, fed back or highlighted the activity on their own channels ♥️ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I hope it did what I set out to achieve and raised some awareness during #cfawarenessmonth and I can’t wait to continue with some more fab takeovers (CF and not) going forward! 🏷 - sorry, it won’t let me tag all involved but thank you @g18evans @alicewonderland84 @jenny_livingston @bourne.to.train @lovetobreathe @itsbeenalongweek @bristolprice @abi_cf_ @breatheeasy_ @thisgirlella @my_lung_transplant_journey @thevftos @rejectinglaurenrowe @the_cystic_fibrosis_channel @bellrose1990 @travisflores @alexstobbs1 @bigchefmini @salty_yogi @stitchmebetter @rimasaurusrex @lung_story_short @_sophlc @running_from_the_list @pricelessbreaths @dear_donor

I know it’s July but here’s a final #nwciecftakeover intro:⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Name - Travis Flores⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Insta Handle - @travisflores ⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Age - 28⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Location - Los Angeles, California⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Hospital you have treatment - UCLA Medical Center⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Pre or post trx - 2 times double lung transplant recipient, in rejection, evaluated to be listed for a 3rd at UCLA.⠀⠀⠀⠀⠀⠀⠀⠀⠀ •CF story & background - Travis was born in Los Angeles and was diagnosed with CF at 4 months old. His family had to move to Ohio to be closer to a better hospital for him. Make a Wish approched him in 2003, when he chose to publish a book, launching his career as an author and motivational speaker, The Spider Who Never Gave Up, first published in 2004, just celebrated its 15th year anniversary April 30 2019. He moved to New York City when he was 18 (2009) to pursue his studies, and graduated from Marymount Manhattan College with a Bachelor's degree in acting. By the age of 22, he achieved a Master's degree in fundraising from New York University. He moved back to Los Angeles in 2013 to pursue his career in entertainment, as well as continue his charitable work. In 2014, he began his preparation for the first transplant which he received in March 2015. Following that, he started his work as an Executive producer and screenwriter. He had his second double-lung transplant October 2017. Travis is still pursuing his carreer, working mainly with non profit organizations (CF Foundation, Make-a-Wish, Donate Life, Starlight, Global Genes, DoSomething...). He hopes a third transplant will extend his life so that he can continue his life's work.⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Favourite food - Gnocchi

How is it June already?! We’re kicking it off with pancakes for breakfast 🥞 and a final #cfawarenesstakeover today (intro post to follow)⠀⠀⠀⠀⠀⠀⠀⠀⠀ Happy weekend everyone ♥️

#nwciecftakeover intro⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Name: Chelsea Spruance ⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Insta Handle: @salty_yogi⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Age: 26⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Location: US Virgin Islands ⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Hospital you have treatment: Johns Hopkins •Pre or post trx: Pre (no transplant plans currently)⠀⠀⠀⠀⠀⠀⠀⠀⠀ •CF story & background: I was generally healthy growing up with no issues until I reached 19 in college. My body went through a giant shift where in a matter of a year I lost over 30% lung function, 20 pounds, and was the worst health wise I ever was. I was at 26 % lung function, 89 pounds, still trying to attend college, and figuring out what my life was. Even my amazing doctors questioned if I could come out of it. Thankfully through years of hard work, rededicating myself to weight gain, exercise, and a mindful lifestyle I was able to regain my life back. I was able to graduate with a BA in psychology in only four years despite my health. I became a yoga teacher to help spread what has helped me on my journey so much and now am teaching yoga to the CF community virtually at @yogaforcf!! Ive been in those places of hopelessness and come out the other side and I hope that sharing my story I can give hope to those who may be where I was and help educate others on how to avoid that place all together. I still operate at about 50% lung function but I hope that seeing what I am able to do shows that its not always the number that counts, it is what you are able to do with it! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Favourite food: I have loved apple cinnamon rice cakes since I was little, it is my comfort food for sure! Otherwise I love any asian food, sushi, Chinese, Vietnamese, Japanese, I could eat any of them for every meal!! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ •Aside from CF there is so much more to me and my story!! I live lived all over the US and am a wanderlust child at heart. I have traveled the world from Thailand, Costa Rica, road tripping through the US, to backpacking through Europe with all of my meds on my back. CF can only limit me as much as I allow and I strive to push the boundaries and see what IS possible rath

One of my favourite lunches (although a delicious dinner too) - it always reminds me of summer and eating in the garden...obvs don’t let those limitations stop you giving it a go thought! Tomato tart tatin 🍅 Ingredients •500g tomatoes, varies sizes and types is best and some firmer small tomatoes •puff pastry, 1 sheet •balsamic glaze •brown sugar, a tablespoon •butter, 1tbsp •olive oil •thyme •goats cheese (pasteurised) Method •Pre heat the oven to 200 degrees c •Rinse tomatoes and chop (halves for cherry, more for bigger tomatoes) •Using an oven proof frying pan melt the butter and a splash of oil to stop it burning •Add the brown sugar and let it dissolve •Place the tomato’s in the pan face down and let the butter and sugar cook them a little and start to caramelise the bottom •Place a few thyme leaves in the mix and add a squeeze of balsamic •Put the pastry on top of the mix, tucking the edges of the pastry under itself to form a double layer around the edges of the dish •Place in the oven for 20 minutes •Remove and using a plate on top of the pan turn the tart out •Top with further thyme, goats cheese and a last squeeze of balsamic •Eat with a salad and ideally a large glass of pale rose 💕

Please note any views expressed on NowWhatCanIEat pages and social handles are my own. I am not a trained dietician and request not to be considered as such. Should any medical query’s arise from anything discussed in my post please seek the appropriate clinical advice.

In addition, while all recipes are cooked following the guidance I have been given on what it is safe to eat when immune suppressed they have not been checked by a dietician. If the advice you have been given differs from anything here please follow the advice of your team.

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