Becky

Becky 2011

Becky is 27 years old. She has Cystic fibrosis. She was diagnosed at 10 days old.
She has learned to live with it and cope with everything it throws at her.
She has times when she just doesn't feel like getting up in the morning, as she feels so tired.
Some nights she doesn't sleep because she is coughing so much.
Because of her Cystic Fibrosis, she also has diabetes, osteoporosis, amyloidosis of the kidneys, hepatitis C, gallstones .
The only cure at the moment is to have a lung transplant.
Scientists are working towards finding a cure and they are coming along in leaps and bounds. But as always they need money!
Very recently a treatment was found for one type of Cystic Fibrosis, there are 1400 different mutations known. Only 4% of the CF population has the mutation that this treatment can work on.
Becky is not one of them!
From the outside Becky looks like any other 27 year old, but on the inside it's a totally different story.

Becky update. 2012

Becky is now waiting to have her thyroids removed. The operation is iminent.
They are getting larger by the day and are causing her a lot of discomfort.
Most nights she wakes up choking.
She is finding it hard to swallow, food gets stuck in her throat.
She has problems singing now, which she loves doing.
The enlarged thyroids are connected to her Cystic Fibrosis. Because her lungs are scarred they are secreting a substance which is then damaging her kidneys by making them lose too much protein which is causing her thyroids to be enlarged.
This is quite a rare thing to happen but it obviously does happen.
So she is now waiting for a call to go in to hospital and have them removed.
Hopefully she will still be able to sing after.
Becky performing.

Beckys operation 2012

At last Becky has a date for her thyroid operation. She is going into hospital in Malaga on Thursday 13th September.
She will be staying in for 3 to 4 days.
I will keep you updated on her progress.


08.10.12
She has finally had her op. She was only in hospital for 2 days. Everything went well. They removed them totally.
She is now on more tablets for ever. But seems to be coping with them well.
After 2 weeks she still can't sing yet but that will come back in time. Her voice is still weak. So no shouting.
The main thing is that she can now breathe easier.
She took part in a Fashion Show on Saturday to help raise money for a local animal charity.
What a star!
Day after the op.

Becky in hospital

Waiting to come home 2 days later.

At home

1 week after op. Looking good!

At home

2 weeks later. Even better!

Fashion show 2013

Becky as a model at a charity fashion show. 06.10.12

Update September 2013

Becky has been having a rough time lately. In May she got a lung infection and after trying to get rid of it with oral antibiotics, eventually had to have iv's at home. These didn't work so she had oral antibiotics again for 3 weeks. After this she had ivs again for 2 weeks. She is at the point now where she has had all this treatment but she is still feeling tight-chested and weak. Unfortunately her last lot of meds made her sick so she lost weight. She is trying to put on weight now. 
She has several appointments this month so hopefully the doctors will be able to sort her out. 
She had a bleed a few weeks ago and ended up in hospital. Luckily it stopped by itself but it was very scary for her and us.
She is now living with her boyfriend near the coast and trying to enjoy her life as much as possible.

Becky's Update March 2014

After spending nearly all last year with chest infections, Becky is now on intraveneous drugs at home. She spent 5 days in hospital to start her off; now we are administering her antibiotics via a drip at home. She has to have these for 21 days. She has already had the line changed 5 times, one only lasting a day before causing phlebitis, this causing her a lot of pain. Her new one was put in last night but is starting to hurt already. I don't know where the next one can go if she needs it changing again.

Becky, as ever, is remaining positive, despite being told by her CF doctor that, now she is getting older, she will start to deteriorate. Her lungs are badly scarred due to all the infections. She has lost 3 kilos, as the antibiotics give her really bad diarrhea.

This doesn't sound a lot but to a cystic fibrosis sufferer it is a big deal. Hopefully when she finishes the course of drugs, she will start to put weight on again.

She was living with her boyfriend on the coast but found out that the flat was damp, which was probably the cause of so many infections. They have moved back in with us until they find something else more suitable.

This year we are hoping to arrange for her to make a CD, covering some inspiring songs. I looked on a site and there were literally hundreds of cystic fibrosis sufferers, all commenting on songs that either mean something to them or are an inspiration. Becky and I have perused through the list and have chosen some that mean a lot to her and some of her own choices too and we are hoping now to gain permission for her to make this CD. We will then try to sell it to raise money for research into finding a cure.

I will keep you posted about this.

April 2014

Copy and paste this link to her updated video:
http://youtu.be/Wednd3etINY 

Becky has found a lovely apartment in Alhaurin de la Torre. She is close to her sister and her family. 
She is still not well. She is starting to breathe a bit easier but is still coughing a lot. We had a scare last week. She was rushed to hospital by ambulance as her heart was beating too fast and couldn't be slowed down. After a few hours tho it stabalised and she was allowed home. She is now waiting for an appointment to see a heart specialist. She is seeing her chest doctor tomorrow so hopefully they will shed some light on why she is feeling rough. 

Update June 2014

Becky is now having to use oxygen 24/7. She has a machine for nighttime use and a portable machine for when she is moving around. 
She saw her doctor last week and has been told they are going to send her to Cordoba to be evaluated by the transplant team. If they can carry out the operation they will give her lungs and kidneys. She will not have to wait on a list. However if they decide that her hep C levels are too high she will have to have treatment first. But the treatment is not nice it is a bit like chemo in that it destroys your immune system and makes you sick and tired. She would have to spend a lot of time in hospital. The treatment will last 6 months. This should cure her then she could have the transplant. She is remaining positive and has a lot of support from family and friends and other cfers. Today she helped raise money on a Tombola stall at a school fair and sang a few songs on the stage with a band too.
She is amazing!

October 2014

The latest news is not good!
We have recently been told that Becky can not have a transplant, ever. This was a big shock to us as we were pinning our hopes on this to give Becky a better life.
We have since seen her liver doctor and he gave us some good news. There will be a new treatment for Hep C available in January 2015. It will almost certainly cure it in 96% of cases and Becky can have this as the side effects are mild.
We have been told conflicting things from several doctors so we are now seeking a second opinion about the transplant.
 At the moment she has continual coughing, feeling sick, losing weight.Her doctor just  says it's the CF as it is a progressive disease.

Despite all this Becky took to the skies last weekend on a paratrike and raised 1000 pounds for CF research.
Before her flight.

Becky 2015

2015
Welcome to 2015 .

Here we are in 2015.Becky is still fighting her illnesses.
We hope this year will bring a lot of changes in CF treatments. We have heard of lots of things going on. We just need to educate Becky's doctor so that she can push for Becky to go on trials or have new treatment available.
Fingers crossed the Hep C treatment will be effective and come really soon.
Becky seeing out the old year 2014 and welcoming the New Year 2015.

April 2015

Becky has been on the new Hep C treatment for a month now. tomorrow she is going in for her blood test result to find out if it is having any effect. It is a 3 month course of tablets. Fingers crossed there is some improvement.

She has started recording her CD. Unfortunately she will not be able to record as many songs as she wanted. She has found it very tiring, but she is pushing herself to finish it so we can get it out there to raise money.

There has been lots of news about trials for a new drug. Becky wanted to take part but her doctor is not letting any of her CF patients join in despite them requesting to be a part of the trials.  God knows why. She is a strange woman. If and when the new drug is approved by the FDA she will have to acknowledge it and give it to her patients. Hopefully this will be sooner rather than later. 

Becky has had a lot of bleeds lately, probably due to infections. This is common when there is an infection.

She is waiting to have a feeding tube fitted. Despite her best efforts and mainly because of consistent infections Becky has found it really hard to put on and maintain a decent wait. She has finally relented and agreed to have the tube. She saw the anesthetist yesterday and is now waiting for the op.

They are talking about putting her to sleep but the anesthetist says this isn't advisable with the condition of Becky's lungs. She can be sedated instead. We are waiting to hear of her lung doctors decision, it is all down to her. I hope she makes the right one. 

Updates to follow.
This was taken on 19th April 2015 Becky and her newest nephew, Gabriel, 3 months old.

Becky Update 2016

It's been a long while since I have written anything. A lot has happened.
Becky had a gastro tube fitted. She put on 8 kgs in a few months.
Becky went for a lung transplant assessment in Cordoba, Spain last November. It didn't go as we had hoped. They did say they wouldn't out her on the list yet but her doctors need to keep them informed of how things go and maybe they will consider her for a kidney and lung transplant at a later date.
Since then she has had a few infections the last one only two weeks after finishing her ivs for an infection. This last time she went into hospital and they fitted her with a portacath. She came out a few weeks ago. She has gone to the UK to visit her family. Luckily the weather is really good for her.
She lost some weight during her hospital stay.
We had hoped her doctor would get her on the compassionate program for Orkambi but they refuse saying there is not enough proof of benefits in patients with low lung function like Becky has. We are not sure what her lung function is as they never do it on her hospital visits. She did do it at home when she came out of hospital and unfortunately it was only 19%. I hope this was due to her not breathing properly because of her op and her lungs being inflamed. 
I am now trying to raise money to buy her a sit on scooter so she can get around when she gets too tired to walk which is quite often now. She has been using a wheelchair to get around recently. But ideally she would like something not so awkward to transport.
If you would like to donate here is the link to her page:
https://www.betterplace.org/en/projects/43257-help-becky-get-mobile-again


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Sandra | Reply 24.01.2014 22.45

Have you heard of the Gerson Institute? I believe they can help Becky. If you havent heard of it check their web site, www. gerson.org You can email them.

Amazed.by.you | Reply 15.04.2013 02.09

You are so brave. I admire you. This is an amazing story and I am glad that you have been able to come through fighting. Much love.

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Latest comments

06.08 | 21:14

What a beautiful tribute to a beautiful young lady xxx

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22.05 | 19:36

absolutely awesome! Thanks you for making and sharing this!

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22.05 | 10:31

Wow! What a beautiful tribute! I was very moved by this wonderful collection of images and music...So sorry once more for your great loss.

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21.05 | 21:42

Absolutely beautiful this bought tears to my eyes. What a beautiful lady beaky was your must be so proud of her such a brave girl. My love goes to you Sarah and

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