Friday, 23 September 2016

RIP Dalton and Katie

http://www.independent.co.uk/news/world/americas/katie-dalton-prager-real-fault-in-our-stars-couple-cystic-fibrosis-death-a7323961.html

I came across this article and thought I would share it. Sadly, this isn't a heart breaking Hollywood movie but true life. It is very sad that so many young people are dying of this horrid disease, even after being given another chance of life via a transplant.

I am glad that Katie and Dalton found each and loved each other the way they did. Ellis did all she could to not let CF control her short life  It should remind us all to live our lives to the fullest, love, laugh and do what makes us truly happy.




Thursday, 21 July 2016

My Birthday Wish

http://cybercystic.blogspot.co.za/2016/07/youre-only-allowed-to-die-with-smile-on.html?spref=tw&m=1

So today is my birthday and of course at one point someone will say 'make a wish'. Well I obviously can't get what I really want and that is to hold Ellis again, kiss her, see her smile, look into her lovely brown eyes, hear her voice and her laugh etc etc

But there is one or maybe two wishes that I could ask for. The first is wishing that a cure be found really soon. Second that more people join the organ donor list.

I have attached a blog that is written by Ellis's friend Andrew. Sadly he is at the end stage of CF and is in desperate need of a transplant. Reading his words reminds me of how scarey that time was with Ellis.

So for my birthday I would like you to take a minute to read his blog and hopefully this will encourage you to sign the organ register if you haven't done so already.  

Much love to you all.

Saturday, 12 December 2015

Literally paying to stay alive.

I thought I would share some information regarding the NHS prescription charges for those suffering with Cystic Fibrosis.

In 1968 a medical exemptions list was drawn up to allow free prescriptions for those suffering with certain long term life threatening conditions. These conditions included Epilepsy, Diabetes and Addison's disease. So why was CF not on the list? In 1968, when the list was drawn up, most children with CF did not live to become teenagers let alone adults. Fortunately the outlook for those with CF has improved greatly and many do now live into adulthood.

Unfortunately the medical exemption list has not been properly revised since it was drawn up over 40 years ago. In 2009 Gordon Brown introduced exemption for cancer patients and had promised free prescription for those with long term conditions. Those with CF are still waiting. This means that many are literally paying to stay alive.

A huge amount of treatments and medications are needed to fight CF. To illustrate this here is a picture showing the oral medication that Ellis took on a weekly basis, 322 in total. This did not include, nebulised and inhaled drugs, nasal sprays, IV antibiotics, food supplements and endless creon capsules.

 Please take a moment to sign the petition for those with CF in England to get free prescriptions.
https://you.38degrees.org.uk/petitions/free-prescriptions-for-cystic-fibrosis


Sunday, 30 August 2015

5 years ago today, the day our new chapter began......

This day 5 years ago was the day our lives would, once again, begin a new chapter. You see, it was the day that Ellis woke from her heart and double lung transplant. The previous day Ellis had the operation which was particularly difficult due to the severity of her CF lungs and took about 6 hours, which seemed like a lifetime. I remember everything so vividly, what we spoke about prior to her going into theatre, the feelings and thoughts I had, just how surreal and totally unbelievable the whole scenario was. I can still hear the noise of the closing theatre door as the nurse wheeled her in and Ellis waving goodbye to us with her huge, but obviously scared smile. I remember thinking "this might be the last time I ever see that beautiful smile and big brown eyes".

                                                 Waiting to go to theatre.

Thankfully that wasn't the case, at about 4.15 Ellis came out of theatre and was taken to her recovery room. And there she lay surrounded by noisy machines and nurses, hooked to endless wires and tubes, needles coming from her wrists and neck. I remember touching her face and holding her hand and not being prepared for how cold she felt, scared that she wasn't breathing as her chest wasn't heaving. She looked more peaceful than I had seen her in a long time as the breathing machine did all the work for her and right there and then I knew she would wake up. At about 10 that evening after numerous conversations with the surgeon and team and out of pure physical and emotional exhaustion, I reluctantly left to get some sleep. 

When I awoke, I instantly called the ward and was told Ellis had awoke at about 2am, that they didn't call as they had lots of checks and tests to do. They assured me she was doing well. I simply can not describe how I felt when I walked in that morning and saw her face. The happiness I could see in her eyes is something I will never forget. To see her breathing on her own, with her new lungs aided by some oxygen, and to feel her skin warming with every beat of her new heart was simply overwhelming. At that moment I thought of her donor laying there whilst her family had to do the unimaginable and say goodbye to her, probably in a similar room to this. I burst into tears, they had lost their loved one but they made the most, generous, courageous and selfless decision to donate her organs and give the gift of life to total strangers.

                                                   Awake after surgery.

Without her donor and the choice her family made, our new chapter in life would never have begun.

Thursday, 30 July 2015

Happy Birthday Sweetheart xxxxxx

You can leave a message or light a candle here xx

Happy Birthday Angel xx

Happy Birthday up in Heaven,
that’s where all the Angels go.
And down here in our hearts,
your light will always glow.

Whilst the angels hold you close,
and sing you a birthday song.
We will send you lots of love,
today and all year long.

Happy Birthday Ellis.
Love you to the Moon and back.
Mum, Mani, Mandy and C√°el.
♥♥❤☆☆★❤★☆❤♥♥




Sunday, 26 July 2015

Happy birthday my beautiful sister.

Your birthday is approaching, it is getting near,
I wish with all my heart that you were still here.
You were brave and an inspiration,
you loved life and never showed your fear.
I do so wish that I had more time with you,
you meant the world to me and a lot more too.
Wherever you are shine down on me bright,
and enjoy your birthday with all your might.
May your beautiful soul glow down on me,
until we are together again laughing happily.
You was an amazing sister, in fact you were the best,
then God made you an angel, because you needed to rest.
Now you are free and out of pain,
you can spread your wings and fly again.
Flying up, up high into the sky,
whilst I stay strong for you and try not to cry.
I will never stop missing you.
I will love you forever.
Happy birthday my beautiful sister.
❤☆♥☆♥☆❤
Love Mandy.

Thursday, 2 July 2015

A message from Viv.

I received this message from Viv, Ellis's former CF paediatric nurse. Viv took care of Ellis pretty much all of the time she was in hospital and they had a great relationship. Feel so humbled that Ellis is remembered so fondly by those that new her.

Viv's message.

Today on the 30th June I went on a study day to Newmarket with some other CF nurses. The afternoon presentation was about transplants. A consultant from Papworth, named Helen Barker, gave a talk about patients on the transplants list. She spoke of a case, in 2010, when a young lady was placed on the transplant list, but whilst waiting for a donor she became very unwell and it was decided that patient be given palliative care as there was no suitable organs available. During that evening whilst Helen was writing up the palliative care drugs to keep the patient comfortable, Morphine and Midazolam, the call came saying they may have a potential donor, and the following morning the young lady went to theatre for a heart and double lung transplant! Then a picture appeared of a young lady smiling, post transplant. That young lady smiling down at us all was Ellis!!

Today the amount of organs available fall far short of the amount of organs required.

A beautiful young lady missed by many x