Tuesday, 28 February 2017

Cystic Fibrosis - Part 1

When I was young (I'm a 1980's child), management of CF was primitive compared to how it is now.

Diet & Treatment
From what I remember, Creon wasn't on the market until around 1985. However there was another tablet that aided digestion, which wasn't as powerful as Creon. As a result, fatty foods such as cake, crisps, biscuits, etc were foods to avoid in the CF diet. So the introduction of Creon came as a shock to me when I was allowed these types of food and although I am able to have these foods, I don't really eat them due to not having much of a sweet tooth.

Over the years treatment has improved vastly, aiding a better quality of life and CF people living longer too.

Not only has treatment improved over the years, but also equipment used to administer them. With advances in technology, nebuliser equipment has become more compact and treatment taken through these have become quicker to take too.

Medical advances seem to be happening fast at the moment with all these promising drug trials.

OK not all trials work out as we hope, lessons from them are learnt for the next drug trial, so all is not lost.

Exercise
It was once believed exercise was bad for the lungs of CF patients based on the coughing fits caused as a result.

It was later realised coughing during exercise was down to the airways opening up as a result of deep breathes, which in turn improved the lung function.

Mix and match
Before segregation came into force in 1991, CF patients were allowed to mix no matter the strain or bugs they had. Little was known about cross infection.

Looking at how segregation works now, people new to CF and use to the segregation rules will not believe that there was a time when CF patients went on coach trips together. One trip seeing the patients camping at Sherwood Forest, with 6 patients of different bugs and strains sharing a tent.

Lessons learnt about CF for new parents of children with CF
From my own experience one thing I've said to parents new to CF is to encourage exercise with their CF child from an early age. Find something the child will enjoy and would take up as a hobby.

I am lucky to have a mild form of CF and have coped with it really well.

However not all has been rosey with CF. There are times when I get upset, stressed or anxious about things. In particular when I'm not well.

However once treatment for a chest infection shows signs of working, the psychological strain this has on me is lifted.

CF will have psychological effect on not just patients, but also their parents, siblings and partners. This side of CF happens to everyone at some level.

CF people do try to remain positive and tend to use a lot of humour as a coping mechanism, which for me works.

Every day will be a learning curve for anyone, whether it be for a CF person, relative or even the CF team at the specialist clinic.

One thing for sure, despite the effects CF can have, the treatment of today means we get to live a better quality of life and live longer and longer.

Two years ago a man well known at my hospital passed away at the age of 75, which for me is the oldest known patient.

If he can live so long especially when at the time he was born little was known about CF, then there is hope for us all.

Monday, 27 February 2017

Cystic Fibrosis sufferer, Peter Trengove, finds big health improvement weeks into trial of new drug, Orkambi

Published: 27/02/2017 | Reporter: Adam Everett
Peter Trengove has found a noticeable
improvement in his health weeks
into the trial of a new drug called Orkambi.
A Cystic Fibrosis sufferer says he has seen a noticeable improvement in his health weeks into a trial of a new breakthrough drug.

Woolston resident Peter Trengove nearly died at three days old because of Cystic Fibrosis, which makes it difficult for sufferers to breathe and digest food.

His older brother Paul died at the age of six due to the life-limiting condition.

But 37-year-old Peter has seen noticeable effects after three weeks of a four-month trial into a new drug called Orkambi.

Peter had earlier trialled a drug called QBW251, which was hoped to be close to a cure for the disease but proved to be not effective as predicted.

However Orkambi, which sees two tablets taken twice a day at mealtimes, has given him fresh hope.

He said: "Although the outcome of the QBW251 drug trial concluded with the drug not being as affective as predicted in lab tests, there have been other similar medicines that have made it onto the market and used by people who meet a criteria due to high costs for the drug.

Orkambi is on the market in America, but is yet to come on the market in the UK due to high costs whereby for one person costs mount up to £100,000 per year.

However all is not lost.

There have been continual drug trials happening over the last couple of years to find a drug that either works in the same way as Orkambi or will work alongside it to make Orkambi more effective.

I am currently doing a drug trial whereby I have to take Orkambi, which is being tested alongside a trial drug that's inhaled to see the effects these combined drugs have on Cystic Fibrosis."

Peter has noticed fewer breathing difficulties, a 'dramatic' reduction in coughing and greater lung function.

He added: "I've been able to breath better and when I cough, the feeling I have in my lungs is as though nothing is there.

My coughing that occurs in the morning after a night's sleep has reduced dramatically to being almost non-existent.

When I'm at the gym I am able to work that little bit harder on the exercise bike.

When I wasn't well last year my lung fuction dropped right down to 31%, which is a dangerous level in Cystic Fibrosis and can result in being placed on the transplant list.

Since then my lung function has lingered around 40%, which although is better, it isn't where I'd like it to be.

As a result of being on Orkambi for three weeks and one day my lung function has increased to 49% - and this is just Orkambi.

I am yet to be placed back on Hyptertonic Saline and this new trial drug which will compliment Orkambi.

My reckoning is once I'm on them my lung function will increase even more."

Monday, 20 February 2017

Cystic Fibrosis, Orkambi & Warrington Borough Transport

On my way home from Pure gym, I was delighted to see Warrington Borough Transport (WBT) display a poster raising awareness about Cystic Fibrosis (CF) on the bus stop on Manchester Road opposite the Esso garage.

Had I not been driving, or the roads be busy at the time of travelling, I would have pulled over to take a photo of this as it really made my day to see such publicity in aid of a life illness that I and many others suffer from.

I thought it would be nice to give WBT an insight into what I've been through with the new exciting breakthroughs in regards to better treatments for CF, and also update the Warrington Guardian with how things have been since I did the QBW251 trial in October 2015, a drug that was to be the closest to a cure for CF.

Although the outcome of the QBW251 drug trial concluded with the drug not being as effective as predicted in lab tests, there have been other similar medicines that have made it onto the market and used by CF people who meet a criteria due to high costs for the drug.

One drug, which was on the news in recent months, is called Orkambi. This is a pink tablet whereby 2 are taken twice a day with food.

Orkambi is on the market in America, but is yet to come on the market in the UK due to high costs whereby for 1 CF person, costs mount up to £100k per year.

However all is not lost.

There have been continual drug trials happening over the last couple of years to find a drug that either works in the same way as Orkambi or will work alongside to make Orkambi more effective.

I am currently doing a drug trail whereby I have to take Orkambi, which is being tested alongside a trial drug that's inhaled to see the effects these combined drugs have on CF.

At present I am on week 4 of the trial whereby I am taking Orkambi before I start the trial drug next Tuesday (28 February 2017).

The durg trial program is as followed:

  • Month 1 - take Orkambi only
  • Month 2 - take Orkambi and trial drug
  • Month 3 - take Orkambi only
  • Month 4 - take Orkambi, trial drug and Hypertonic Saline (a nebulised salt solution that helps clear the lungs)
At the end of the trial, as a reward for my volunteered help, I will be allowed to continue Orkambi.

The question you've probably been asking throughout this email is, "Have I noticed any effects of Orkambi?"

The simple answer is, yes.

"What effects have I experienced?"

I've been able to breath better and when I cough, the feeling I have in my lungs is as though nothing is there.

My coughing that occurs in the morning after a nights sleep has reduced dramatically to almost non-existent.

When I'm at the gym I am able to work that little bit harder on the exercise bike and my heart rate at its peak has dropped from 150 beats per minute to 120.

I am yet to know how Orkambi has affected my lung function. At the beginning of the trial my lung function was 44%, so it will be interesting to see how this changes over the coming months.

Had it not been for the likes of Warrington Borough Transport and many others who raise awareness of CF, the donations raised for the CF Trust would be almost non-existent and vital drug trials, an example described above, will not happen.

It may have been one poster on the side of a bus stop that I have seen on my travels through Warrington, but if I have spotted the poster, there's a chance other commuters and bus users will have seen this too.

I am pretty sure if every single person donated £1 after seeing the poster, this would help fund further investigations into vital treatments leading to a possible cure for CF.

So thanks again Warrington Borough Transport for your contribution in raising awareness of CF, a life threatening illness.

Monday, 13 February 2017

New Online Prescription Service

Lloyds Pharmacy informed me Holes Lane Surgery have been chosen for a pilot online patient service, which has already been rolled out across the Halton and Liverpool areas.

The service is called "SystmOnline".

It is very easy to register. All you need to do is take 2 forms of ID (1 picture ID and a utility bill with your home address on).

I was able to use my driving licence as picture and address ID, which saved time having to dig out a utility bill.

I was given a letter with a website address for the surgery on, my username and also a temporary password, which I changed once I logged into the service for the first time.

This online service allows you to do the following:

  • Book appointments
  • Check future appointments
  • Check previous appointments
Pros: you're not having to phone the GP surgery on a 0845 number and wait for an answer, saving your phone bill.
  • Order repeat prescription
  • Check if you have any uncollected prescription
  • Register or change which pharmacy you would like to collect prescriptions from.
Pros: this saves you having to travel to your local pharmacy or GP surgery to delivery a repeat prescription form.

Although you can visit the pharmacy/surgery in person to place an order, this saves you time on travel.

Cons: Not all people will have computer access or know how to use one. If they're able to travel to the GP surgery to place a prescription order this won't be an issue. If not, they will be able to have a patient representative to do this for them.

For more information about this online service, click on this link.

Wednesday, 1 February 2017

Cheshire Dogs Home

The title of this blog most probably surprised my readers given I usually talk about CF, drug trials and film making. However this is a special blog as a result of paying a visit to Cheshire Dogs Home today on my way home from work.

I've been a dog owner for 9 years and always loved dogs. Mainly because they give unconditional love.

My visit to Cheshire Dogs Home was to see what sort of voluntary work they offer. I had a look around the home to get a feel of the home. I was amazed and impressed how lovely the home looked.

Whilst visiting I bumped into someone I worked with in the Council. Her visit was merely to take her mind off daily life and also to see what dogs were there with the intention of getting one. This would be her first dog too.

It was a pleasure to share tips about what foods are suitable for dogs (puppy as well as adult) as well other tips.

We saw three beautiful 8 year old Retrievers (two black and one chocolate brown). All sisters, who were taken there yesterday as their owners weren't able to look after them anymore for whatever reason.

Obviously I don't know the story as to why, so can't make judgement.

However as a dog owner, I was able to read their body language and they were ever so happy and welcoming. Had I been able to, I would've had adopted all three.

For any owner who have to give up their dog, they will have their reasons and will probably have difficulty making such a decision. Especially if like these three beauty's they've had the dogs for eight years.

Some dogs my family have are from a dogs home. Their previous owners weren't able to look after them for one reason or another. However like with the dogs I saw today, my family's dogs were well looked after prior to going into a dogs home, and are very happy and well looked after now. The way they behave now is as though they were in the family from puppy age.

I've got two Cocker Spaniels who have PRA (Progressive Retina Atrophy), the effects of which is slowed down with three doses eye-drops and one tablet per day. They're very happy dogs despite having lost their sight as a result of PRA, and are very clever as they have drawn a mental map of the layout of my house and where obstacles are i.e. furniture.

Taking on another dog/s at this time wouldn't be fair on my two dogs or the dogs taken on. If I could help re-home dogs left at Cheshire Dogs Home, especially like the ones I saw today, I'd be a happy man.