Tuesday 11 April 2017

She was powerful, not because she wasn't scared but she went on so strongly despite the fear.

I will keep this update short but sweet with how my hospital appointment went today, especially as you know how I can just get carried away!!

SO, before my appointment which was actually getting the feedback from my Annual Review I had to undergo a fasting glucose test.  If you aren't familiar with these, basically they are to test you sugar levels to ensure you aren’t diabetic as this can be a side affect from CF (our bodies sure do like to challenge us!!)

Although it may sound slightly (very) dramatic, I bloody hate them for the pure reason I have to fast from the night before knowing that I probably will not be feasting again until at least 1pm the next day! 

Aside from the feeling of starvation and without boring you with too many details these results came back fine - the first blood sugar level being 5.08 and second post drink 6.67! The other bloods from my review where also perfectly ok which I am pleased about especially as usually my Vitamin D levels are lower but I have been taking a supplement to boost this throughout winter!

Before I crack down on the finer details of my lung function test (which is the main one we all really are sitting in our seats wanting to know the result from) I made the most of this beautifully sunny day in London and I try and see the positive in it as lets face it being in an out of the hospital isn't my favourite way to spend my time out of work but arranging coffee (although mine was water) and lunch dates which I am going to share in a separate post about places I love in SW London really put a smile on my face!

Lets talk FEV1 + FVC. These are the values that for me mean more than anything. To see if my hard work had paid off.  Last time I went (17 March 2017) as you may know my results where not as I wanted and I had an infection on my lungs, one that I haven't had for many years so I was prescribed 3 weeks of ciprofloxcilin 2000mg per day which is huge (although the benefit of catching the sun and getting a tan has to be the silver lining!)

My FEV1 hasn't changed it is still at 92% which i realise is pretty damn good but for me that isn't my best especially being a perfectionist but I will chat more about that in a second! My FVC had improved which is amazing to 116% from 102% so things are on the up!! Can I also just say - the beautiful physio i had today not only made me laugh but impressed me so much - she truly is a ray of sunshine with a beaming smile and full of enthusiasm and totally on my wavelength. So I thank her today for making my time in the hospital that much brighter.

After having discussions with the Consultant, who was incredibly thorough and analysed every result possible we have come up with an action plan to try and optimise my health again.  The reason being, we discussed the trend in my results on a yearly scale, this year being FEV1 92%, last year being 96%, the year before 106%. Although a gradual decrease it is still a decrease without a proper reason why.

With this we have decided to take action to investigate if whether its because mid 90’s is my baseline now or if we have missed something which can only be seen via further testing. So, dependant on my sputum (you CF’er will know what I am talking about) we have three options;

  1. CT scan to see if theres anything we have missed
  2. Bronchoscopy which I have had before and gave me answers when this happened 6 years ago
  3. IV’s (intravenous antibiotics) which is last resort as its been a fair few years since then to blast anything lurking away! Of course the other two are first and hope they will be enough,

Reflection on this.. Positive! You may think I am crazy? No! Let me explain. A set back is a set up for an almighty comeback and a negative result will only make you reshuffle life, refocus things andmake sure you are actually looking after YOU (which most of the time I'm too worried and making sure everyone else is ok!) 

Overcoming challenges are what make life so meaningful and interesting, without which we wouldn't appreciate success and struggle usually becomes the solid foundation as to rebuilding your life.  Obstacles can also be opportunities.

So aside from the medical plan, what my plan..

  1. Training - Hitting cardio 3-4 times a week with my weight training but making my lungs work bloody hard - train them like any muscle to get strong. Bonus I get to eat even more so I don't lose weight - YAY! 
  2. Discipline - make sure all my medications are done at the right time everyday. we have to remember CF is a progressive disease, it will get tough as we get older but we are made of stronger stuff than that so remember almost anything is possible if you put your mind to it.
  3. FUN! yes I said it finding that balance, laughing more, eating more good healthy food, smiling more, surrounding yourself with the best kinda people those who make you feel alive and doing the things that are good for your soul.
  4. Be me, always!! Love me more and reduce stress in my life as that will also have an affect without you knowing. 

On that note, before I get carried away - let me leave you with this thought.

Whatever you hold in your mind will tend to occur in your life.  If you continue to believe as you have always believed, you will continue to act as you have always acted. If you continue to act as you have always acted you will continue to get what you have away gotten. If you want different results in your life or your work all you have to do is change you mind.

Sophie xx