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20 June 2020

My Biggest Health Turning Points

I nearly called this post 'My Biggest Health Milestones' but milestones is like when you start walking or your 18th birthday, not the first time you ever have a bowel blockage.



I've had Cystic Fibrosis ever since I was a foetus but I wasn't formally diagnosed until I was six weeks old. As you can imagine, I've encountered some serious ass problems along the way. Some to be expected with the severity of my illness, some really shit scary and some that have changed my life.





I've encountered and overcome many different health problems, some more severe than others. Cystic Fibrosis was always going to throw some hefty and distressing problems my way and I've grown strong enough to accept that they're going to crop up in my life at more points in my life. But until those days come, you'll see me enjoying my life and cross that bridge when I come to it!



Thinking back over my life (it took about two vodka and cokes) there were and are some major points which were health game changers and some were a little frightening, some painful, some which were expected and even some that have made me happy. Yes, you did read that right. I'm not going crazy (yet) or am deluding myself.



Ok, so if you want a little back story about my health journey (sorry for the cliché word), here are my biggest health turning points:



1) BEING  DIAGNOSED
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Ok, it was going to be pretty evident that this would be first. Weeks after my Mam nagged her screaming baby daughter why she wanted milk all the bloody time, the sweat test (a common why to test a child with CF back then) came and a diagnosis came three days later. I was six weeks old. Lives were changed, not just my own (even though I was oblivious to it all, all I wanted was more milk) but my family's too. Meds were started, regular hospital appointments begun and so many questions needed to be asked and answered.



2) FIRST  IV'S  /  HOSPITAL  STAY
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The news that my parents had been dreading - I'd contracted Pseudomonas (a chest bug) and it was time for my first stay in hotel hospital. I was six at the time. I never knew what to expect. Neither did my parents to be fair. I never knew that it would be so traumatic. I never knew that I would be starting a new drug just being introduced in CFer's (Tobramycin) and I never knew that the other IV antibiotic I would have injected through my veins stunk of cats piss (Ceftazidime). Who'd have thought?! After my first IV stay, I knew what to expect for the next one - as long as it didn't happen anytime soon...



3)  GAINING  A  PORTACATH
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The operation I had been wanting for months. After years of screaming the treatment room down when a new needle had to be put in for IV's, the tears and pain of the realisation that the needle had bust in my veins, the Portacath was seen as a godsend. For those who don't know, a Portacath (Port in short) is a little device that is inserted underneath the skin, attached to it is a line which threads through a vein to the top of my chest and is there ready and waiting for when IV's are needed. It makes IV's painless and stress free. Believe me, it's been my life saver. The operation came in February 2005 at the age of 11. Then days later...





4) BEING  DIAGNOSED  WITH  ABPA  /  DIABETES
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One diagnosis was expected. One wasn't. Cystic Fibrosis Related Diabetes is a tricky one to explain. It's not either Type 1 or Type 2. It has the features of both, but is not directly linked to both types if that makes any sense whatsoever?! Even after being a diabetic for 15 years, I still struggle to explain this one! So the insulin started and my Mam injected me for the first time dressed up as Bugs Bunny. I wouldn't ask if I was you, it's not what happens when you get diagnosed with diabetes, I promise. You don't get injected by a Warner Bros character.
Then days later, the diagnosis of ABPA (Allergic Broncho Pulmonary Aspergillosis) crikey, try saying that when you've had a few vodkas. This bug is incredibly nasty. I wouldn't wish it on anyone. It can do a bit of damage to the lungs. Well, like any chest bug really. That is when I started the biggest bains of my life - steroids (Prednisolone). Those little white tablets, I swear they'll be with me until the day I die, I can't get rid of them! The last two health turning points I've just written about happened within days of each other. I thought 2005 was a bad year, nothing compared to 2020. 


  
4) BOWEL  BLOCKAGES
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Oh god, these were an inconvenience. I went through 18 months of bowel blockages back in 2005/2006. They came and went as they pleased and we sometimes very painful. The most significant one last 12 days and it nearly led me to not go on a three week holiday to Disney World in Orlando. This resulted in me having the most painful procedure I've ever endured. Something that still makes me shudder to this day. One thing I don't miss from this time is the medicine Gastrgraffin and Klen Prep. Good god they both tasted rank.




5) MAKING  IT  TO  EIGHTEEN
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I defied all those doctors in that small office with my parents. Ok, I know they had to be honest with my Mum and Dad, but because medication has advanced so much over the years, I finally reached my eighteenth birthday and had the biggest birthday party EVER. Well, that's a reason to celebrate surely? 



6) MOVING  TO  THE  ADULT  CF CENTRE
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Oh boy it was hard saying goodbye to my paediatric CF team back in 2011. A group of people who had taken care of me so well and felt like my second family. It was heartbreaking saying goodbye to them all. But it was time to get to know a new team in Cardiff who would be looking after me forever. I wonder if they knew what they were letting themselves in for when they seen me arrive to my first clinic there!



7) LUNG  COLLAPSE
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One of those moments which was shit arse scary. 2012 saw me get the kick up the arse I needed to keep on top of all my meds and treatment regime. This year finally saw the light and made me love to exercise. After a crappy start to 2012, my specialist nurse rang me to tell me that I needed to come into hospital NOW as there was a huge problem with my right lung which another registrar (not on my CF team) had not spotted from my X Ray. I get rushed in, get put into a hospital room and my doctor calls me to the office. He shows me the X Ray. All the bottom of my right lung was missing and of course alarm bells started ringing in my head. It was covered in phlegm and it needed shifting. I'll never forget what he said to me in that office, "Lucy, even if I have to hang you out of the window by your ankles to get this phlegm off your right lung, I will!" 12 days of intense physiotherapy and a lot of coughed up phlegm later, I was given the all clear to go home. The kick up the arse I needed was successful.



8) GOING  5  YEARS  WITHOUT  NEEDING  IV'S
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Actually, around this time five years ago I was just finishing my last dose of IV's. I never thought I would go this long without needing IV antibiotics. What do I put that down to? Hard work maybe, but I think a lot of luck has something to do with it. I hope I haven't jinxed myself now...
But seriously, I'm so pleased that in my adult years with CF that I have made it this long without needing IV's, I know I'm extremely fortunate to be in this position right now, I'm always grateful for it everyday. 




Like I said before, I'm know there will be more problems heading my way eventually, hopefully the next health turning point will be adding Trikafta to my medication list...



Lucy

22 comments:

  1. I think your milestones are the same for most people with CF. I remember thinking I would never need a port,lol. Before that I thought I would never need ivs. Well done on having 5 yrs without ivs ,that’s amazing. I had a run of 2 yrs without them but that was years ago. Keep on doing what you’re doing because it’s working.

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    1. Thank you Anne, you're right when you say that we all go through the same sort of milestones during our lifetime with CF

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  2. I love this list of successes! There's so much to celebrate, and like you said, you defied the doctors :)
    Beautifully written, Lucy!

    Anika | chaptersofmay.com

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  3. Your milestones are incredible Lucy. I'm loving your content around CF and raising more awareness of the disease. You have so much to celebrate and I'm sure there's many more positive milestones to celebrate in the future too - you're too strong not to!

    Jenny x

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    1. Thank you Jenny, I'm going to try and raise as much awareness as I can from now on! x

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  4. Oh My Goodness, you have really been through it, haven't you? I always learn so much about CF from you, and I think it's brilliant that you bring so much awanress about it. You are truly an inspiration! Here's to many more positive milestones for the future, hope the new medication is more help than hindrance!

    Thanks for haring your stories!

    Aimsy xoxo
    Aimsy’s Antics

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    1. I've been through a few obstacles yes Aimsy! I'm so glad you're learning so much about CF from reading my posts! x

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  5. I adore how honest and open you have always been with your heath my lovely, you've helped so many people who suffer from CF. I'm sending you so much love. Stay strong, stay safe. ♡

    With love, Alisha Valerie x | www.alishavalerie.com

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    1. Thank you Alisha! That really means a lot x

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  6. I love your CF posts, I find them so informative. And it's great that your adult life has been running fairly smoothly without needing too much in terms of treatment, it sounds like you've been doing really well! It's not the same but my childhood is sort of a series of health milestones too, my first memory is the night I was taken into hospital getting diagnosed with diabetes. Closely followed by playing with toy spaghetti in my hospital bed a couple of days later while the dietitian spoke to my parents about food changes x

    Sophie
    www.glowsteady.co.uk

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    1. Thank you Sophie! Oh I know, I think it is mainly down to luck though! That must have been a scary night for you when you got taken into hospital Sophie, it's an awful feeling that I know well, toy spaghetti sounds like fun! x

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  7. Thanks for sharing your health truing points during your CF journey, which reading them have been a challenge to you, but you have overcome those challenges which is something to be celebrated :) Hope you keep well :)

    Nic | Nic's Adventures & Bakes

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  8. Lucy, this was so inspiring to read! I've loved your CF content over this last week, it's been fascinating to get some insight into a condition so many people don't know much about and you're doing an amazing job at raising awareness. Your bravery and positivity is incredible and I'm in awe of you! xx

    Amy | sassycatlady.com

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    1. Oh thank you Amy! I'm glad you enjoyed my content for CF Week, I'm aiming to raise as much awareness as I can! Your kind words means so much! xx

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  9. You're so amazing Lucy! It's great that you're being so open with your health journey, it must be so helpful to those that are going through similar journeys. I said this on a previous post of yours, but I truly can't imagine what it's like to go through all of this - you're so strong and brave <3

    Chloe xx
    www.chloechats.com

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    1. Thank you Chloe! I like to try and raise as much awareness as I can with CF! Your kind words mean so much! xx

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  10. Congratulations on your most recent milestone! That's definitely something to be proud of. That's one of those things that you should DEFINITELY celebrate.

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    1. Thank you Britt! I will be celebrating that one!

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  11. Lucy, your CF content just gets better and better.
    I’ve honestly learnt so much from you.

    You have been through so much but you’re still smiling, you’re very inspiring.
    Thank you for sharing and teaching me x

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    1. Ah thank you so much Claire, that really means so much! x

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