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.

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 Cáel.

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

Monday, 20 April 2015

4 years ago Ellis was in the local paper.

4 years ago my beautiful Ellis, expressing her happiness at being given the chance to live. Always wanting the simplest things in life and to be able to help others. Will always be so proud of her. Count your blessings people, life is precious xx

Monday, 9 March 2015

Cáel's thoughts.

Cáel has been creating a culture box at school. At discussion time he told his teacher and the class about Ellis. He explained that Ellis couldn't breathe properly and that the doctors couldn't make her better so she passed away and went to heaven.  One boy asked if she had cancer, which he replied no and another asked if she could walk and he said sometimes. When asked how it made him feel he said he felt sad because he misses her and that he didn't know her for very long because he was only 4 when she went. The teacher asked him what memories he had that could made him feel happy and he replied all of them. He is such a beautiful boy, I know Ellis would be so proud of him.

Thursday, 1 January 2015

Thoughts from Miss Joane.

At this time of year when people get together to celebrate the holidays, I always think of what we would be getting up to. I miss being with you bringing in the New Year like we did everything else together.I will never find a friend like you in my lifetime and that saddens me greatly.  But I am grateful for the time we spent together and the life lessons you taught me, thats the main thing.
Merry Christmas and New Year Ellis.
You mean the world to me.
Love you always and forever.