From The Chest

A month ago, Chris, Gary and I made a 6-part series of podcasts discussing day to day issues about Cystic Fibrosis and how it affects their lives. The success of the series has brought us together to make another series and make improvements to the format.

SERIES 1

The episodes from the first series covered the following:

Part 1 – LOCKDOWN
#1 Gary’s Hair
#2 Peter’s Messages
#3 Chris’s Gym
#4 The Pub
Part 2 – THE EFFECTS OF CF
#5 Are CF & man boobs related?
#6 CF Related Diabetes


Part 3 – LIFE WITH CREON
#7 Reverse the polarity!
#8 Changes in Creon dosage
#9 Creon and snacks


Part 4 – LIFE OF P.I.E.
#10 Panic pill popping
#11 Irritating inhalers
#12 Exhilarating exercise
Part 5 – CF MYTHS
#13 Fitness levels
#14 Educating CF
#15 Laughing at CF
Part 6 – THE MIND WARP
#16 Kaftrio & brain fog
#17 Less symptoms = more time to think
#18 Bo-Peep goes on strike!
#19 A few Dame Edna’s

SERIES 2

Part 7 – KAFTRIO, DISTANCING & ISOLATION
#20 “Are you alright?”
#21 Distancing
#22 Feeling Isolated
#23 Kaftrio – A New Life

With the second series of From The Chest nearing filming, here is an experimental opening title sequence, which although won’t be used in the new series, thought it be worth sharing with out viewers to show we are planning to film another series.

FROM THE CHEST – Experimental opening title

The idea behind this title sequence is we follow the Zoom video signal as it travels through space and bounces off satellites before reaching Earth giving previews of what is to come in the episode along its way.

Building all of the effects for the animation took 2 weeks to make.

The only reason why the sequence has been shelved is simply because it doesn’t quick suit the theme of the series.

It is more of a “CF World” themed sequence than a “From The Chest” theme. Not to worry as the work gone into the 3D graphics hasn’t gone to waste.

There are other projects this will be used in.

Cystic Fibrosis Awareness on YouTube

Over the past couple of months I’ve been having Zoom chats with fellow Cystic Fibrosis friends Chris and Gary. We have been talking about our day to day experiences living with Cystic Fibrosis.

Yesterday we launched a YouTube channel, FROM THE CHEST, where we will be posting 5 minute podcasts to raise awareness how we live with our Cystic Fibrosis and promote the importance of treatment, diet, fitness and sharing our day to day lives with Cystic Fibrosis.

The main theme with these podcasts is how diverse Cystic Fibrosis is by how it affects us differently.

Our content will bring smiles, laughter and tears as we share our moments.

#1 FROM THE CHEST – LOCKDOWN

The pilot episode of FROM THE CHEST – LOCKDOWN was filmed on Sunday, 9 May 2021 and episodes 2 and 3 are in the making.

We aim to fund raise with our YouTube channel for Cystic Fibrosis. However to do this, we need over 1000 subscribers.

The channel is in its infancy as it only went live on Wednesday, 12 May 2021 and we are busy getting more films ready for uploading.

We are in the planning stages to brand this and open an online shop where you can buy merchandise relating to our channel such as mugs, coasters, etc. Again money raised will be for Cystic Fibrosis.

Please help by subscribing to our channel and watch this space for more news. We have some challenges ahead.

Cystic Fibrosis, Lockdown & Doctor Who

Cystic Fibrosis & Lockdown/Shielding
Due to my Cystic Fibrosis I am classed as a Clinically Extremely Vulnerable person, which means during the pandemic brought on by Coronavirus aka COVID-19, I’ve had to go into shielding since the lockdown first occurred in March 2020.

During the lockdown and shielding, I turned to film making and explored what films I could make using the resources I have in green screen and the edit suite software such as After Effects and Premiere Pro. I’ve already made blogs about this at the time as linked below.

Week 1: The Muppet Show
Week 2: The Muppet Show
Week 3: The Muppet Show
Jim Henson tribute

Basic green screen set used for The Muppet Show

I learned a lot about working with green screen, building 3D CGI sets, animation and choreography, which as you can see in the final video below how these come together to make a film.

The Muppet Show
Filmed in April 2020 during lockdown 1

During the making of The Muppet Show, I realised the basic set used was too small for some of the puppets used, so built a much larger set in the spare bedroom, which has since been built to a much larger scale for the more recent Doctor Who film projects.

Inspiration of Doctor Who & Cystic Fibrosis storylines
In 1998 I wrote a story called Genesis of a Time Lord, which used Doctor Who to tell the story of what it is like to live with Cystic Fibrosis. In 2003 I took an extract from the novel and made a film. Here is a link to a blog about the making of the film and includes a download of the original novel.

The Screenplay of 2003

Considering the resources, edit suite and lack of actors, I feel I did a good job of the film, which sees Wythenshawe Hospital and the Cystic Fibrosis clinic used as a backdrop.  The receptionist, Pauline Jacklin, and Professor Webb in the film aren’t actors, but actually work in the Cystic Fibrosis unit and played themselves.  Professor Webb has looked after me since I was 16 years old and I’ve known Pauline Jacklin for at least 20 years.  Pauline since retired in December 2020.

Master of Deception came about as a suggestion by a fellow Cystic Fibrosis, friend Chris Strand, who played himself in the episode. He watched Genesis of a Time Lord and suggested I did a remake with the resources I now have.

Although I thought this was a brilliant idea, I knew keeping faithful to the novel version of Genesis of a Time Lord still wouldn’t be possible. Mainly due to the number of actors, costumes, props and sets required. The scale of the production and budget would be similar to the BBC.

However the idea behind Master of Deception was to use the Genesis film as an explanation why Earth is often invaded by Daleks, Cybermen and other Doctor Who aliens whilst telling the story of how Cystic Fibrosis life would have been affected had the Cystic Fibrosis gene had not been discovered in 1989.

How film making has helped with lockdown/shielding
Filming has helped keep my mind working. Plus there’s a lot of physical work involved too.  Making the console changed how I make films vastly and the episodes COVID, Master of Death and Planet Unknown were tests to see what I could and couldn’t do with the resources I now have. I’ve learned a lot from these and learned how to work with green screen and the console to give the films a professional finish.

Future Doctor Who episodes
I’ve written episodes 5, 6 and 7 with the script for episode 5 almost ready to start filming.

Episode 5, Master of Dimensions, will look at how the Cystic Fibrosis community interact with each other. In reality interactions usually take place on social media such as Facebook. In Doctor Who, the story looks at how the Cystic Fibrosis community interact with each other through dreams.

Episode 6, Evolution of the Silurians, will look at the basic science behind the making of vaccines and treatments, not just for CF, but for general illnesses. This episode will feature a new look Silurian.

The Silurian design as seen in 1970 and 2010
The Silurian Hybrid

The costume I have (Silurian Hybrid) was designed and made by Robin, who is also writing the script. The Silurian Hybrid will feature in the episode and become a new companion for the Doctor.

Episode 7, title TBC, will explore a behind the scenes of how the TARDIS scenes are made, which sees the Doctor visiting Peter.  This will more or less be a documentary drama with some comical interactions between the Doctor and Peter.

Inspiration for the Doctor Who episodes
When writing and filming these recent Doctor Who episodes, fellow Doctor Who fan Robin, who lives in the Isle of Man, has inspired how the history of Doctor Who can be used to make new episodes whilst fellow CFer Chris, who lives in Manchester, has inspired how the workings of CF and related issues such as diabetes can be used to make CF-related storylines.

Doctor Who – Master of Deception

The moment a lot of people have been waiting for, an episode of Doctor Who that tells the true historic story about the discovery of the Cystic Fibrosis gene in 1989 and the revolutionary treatment made as a result, which includes the most recent miracle drug, Kaftrio, which is currently the closest to a cure for Cystic Fibrosis.

Doctor Who 4 – Master of Deception

Synopsis
Whilst the Doctor is in a video call with his recent travelling companion, Chris, who has Cystic Fibrosis, the video call is cut off when the console alarms with a time paradox alert. Not all is as it seems. When Chris later shares a friend’s home-made film with the Doctor, the film reveals why the Cystic Fibrosis community were targets of a deadly attack by the Doctor’s enemies.

Fun Facts

  • The video blog in the pre-title is real and was made by Chris Strand. His channel is ChrisVSCysticFibrosis
  • Robin Burchill reprises his role as the voice of the Master. His channel is RobinGBurchill
  • The working title for this was Doctor Who – M508D.
  • M508D is a common mutation of the Cystic Fibrosis gene.
  • As stated in the episode, the Cystic Fibrosis gene, known as CFTR, was discovered by Lap-Chee Tsui, which opened doors for better treatments that has improved the quality of life and life expectancy of Cystic Fibrosis people, which includes the most recent drug, Kaftrio.
  • Kaftrio is currently the closest to a cure for Cystic Fibrosis.
  • The film Chris shares with the Doctor is Genesis of a Time Lord, a film made 2003, which tells the story how Time Lords came up with Cystic Fibrosis as a myth that allowed Time Lord refugees to live safely on Earth when a Time War broke out on their home planet Gallifrey.

Genesis of a Time Lord can be watched in full here:

Genesis of a Time Lord

The full story of Genesis of a Time Lord can also be downloaded for reading here:

Doctor Who – M508D

During lockdown and shielding, I’ve been rather busy building a TARDIS set and making TARDISodes.

Episodes so far are:

  1. COVID
  2. Master of Death
  3. Planet Unknown
  4. M508D (working title) *

* This film is currently being written and will star Chris Strand as himself, who plays a vital role in this CF related storyline.

The episode will revisit the film, Genesis of a Time Lord, made in 2003 that starred Prof Webb and Pauline, who work at the Manchester Adult Cystic Fibrosis Centre, Wythenshawe Hospital.

Genesis of a Time Lord told the story of how Cystic Fibrosis was a cover to allow Time Lords to live on Earth during a Time War. However there’s more to this than meets the eye.

The Cystic Fibrosis community will be, I hope, totally amazed by this latest episode.

Time to digest foods and why it’s important

All foods digest in the body at different times.  This is how long they sit in the stomach before passing into the intestine.  It’s important to understand the different food digestion times to avoid digestive issues or discomfort.

If you suffer from irritable bowel syndrome it’s worth checking you’re not compounding the problem by mixing foods that digest at different rates.

The times specified in this article are approximations as the exact digestion time does depend on the person and their age, health, metabolism and many other factors.

Fast digesting foods pass through your stomach quickly so will not fill you up.  This makes it easy to overeat and taking in more calories and leading to weight gain.  The biggest causes of weight gain from fast-digesting foods are often fruit juice.  This is calorific, high in sugar and easy to consume a large amount of.

Slow digesting foods will be absorbed at a steady rate supplying your body with constant energy.  However, your body will constantly need to work and it’s important not to consume too many slow-digesting foods to avoid your digestive system getting overworked and never resting.

Avoid mixing fast and slow-digesting foods

It’s advised to avoid mixing slow and fast-digesting foods in the same meal.  Have the fast-digesting foods first, such as fruit, then move onto the slower complex carbohydrates once the fruit is digested.  Eating fruit after a heavy slow-digesting meal can cause it to sit in the stomach and ferment causing gastric issues.

If you eat something while your body is still digesting the last meal it can cause discomfort and risks overloading your stomach.

For breakfast and dinner eat meals with quickly digested foods.  You don’t want to overstress the body after it’s waking up or to be digesting foods while trying to sleep.

Lunch is the time to eat foods that have a mixture of different digestion times as the body is at its most productive.  Something like a cashew cheesecake isn’t perfect food combining but lunch is the best time to eat it.

Water digestion

On an empty stomach, water leaves immediately and enters the intestines.  It’s recommended to have a glass of water first thing in the morning before any food to hydrate yourself rapidly.  Drink water half an hour before a meal, not because of digestion but to stop washing away nutrients.

Juices, smoothies and broths digestion

Juices or broths contain no fibre and will be digested in about 15-20 minutes.  Fresh juices are a useful way to get a lot of vitamins and minerals from fruit and vegetables absorbed quickly.  For health reasons, it’s recommended to have juices that are at least 50% of vegetables to prevent having too much fruit sugar.

Smoothies are where fruit, vegetables or salad have been blended and retain the fibre.  They are more useful than juices for filling you up as they take 20-30 minutes to digest.

Fruit digestion

Watermelons are digested in 20 minutes and other melons take 30 minutes.  Oranges, grapefruit, grapes and bananas also take 30 minutes.

Most other fruit such as apple, pear, cherries, plums, kiwi takes 40 minutes to digest.

It’s recommended to only eat fruit together that is digested at the same time to avoid digestive issues and IBS.  For this reason, watermelon should always be eaten on its own.

Vegetable digestion

Raw high-water salad vegetables such as lettuce, cucumber, peppers, tomatoes and radishes digest in 30 minutes.

Leafy green and cruciferous vegetables such as kale, broccoli, cauliflower, bok choy when cooked digest in 40 minutes.

Root vegetables, excluding potatoes, like beetroot, carrot and parsnip digest in 50 minutes.

Starchy vegetables such as butternut, corn, sweet potatoes, potatoes and chestnuts digest in 60 minutes.

Grains and concentrated carbohydrates digestion

Brown rice, buckwheat, oats and cornmeal take 90 minutes to digest.

Pulses and beans all take about 2 hours to digest.  This includes black beans, chickpeas, lentils, red kidney beans and soybeans.

Seeds and nuts digestion

All high-fat seeds like sunflower, pumpkin, sesame take about 2 hours to digest.  It’s recommended to soak your seeds like in my pumpkin seed candy to aid digestion.

Nuts all take around 3 hours to digest.  This includes the legume peanuts and all other nuts like almonds, cashews, walnuts, pecans and brazils.

Meat and dairy digestion

Nest and Glow is a plant-based recipe site but for completion, I will include the digestion times for meat and dairy.

Skimmed milk and low-fat cheese products 90 minutes. Cottage cheese and soft cheeses 2 hours.  Hard cheeses 5 hours.

Egg yolk 30 minutes and whole egg 45 minutes.

Non-oily fish 30 minutes and oily fish 50 minutes.

Chicken and turkey 2 hours, beef and lamb 4 hours and pork 5 hours.

Food digestion bottom line

  • Always eat fruit before the main meal as it digests much quicker.
  • Avoid pure fruit juice and have at least 50% of vegetables in fresh juice to avoid having too much sugar.
  • Don’t overstress your body by eating foods with a long digestion time either first thing in the morning or last thing at night.  This can cause insomnia.
  • Lunchtime is the best time to mix foods with different digestion times.
  • Digestion times are rough estimates and depend on the individual.

If you have digestive issues that leave you in severe pain speak to a medical professional to investigate and do not diagnose yourself.

Time to digestDairyFruit & VegFish & Meat
15-20 minutesBroths or juices.
20 minutesWatermelons.
20-30 minutesSmoothies.
30 minutesEgg yolkOther melons.
Bananas, grapefruit, grapes and oranges.
Raw high-water salad vegetables i.e. lettuce, cucumber, peppers, tomatoes and radishes.
Non-oily fish i.e. cod, haddock, plaice, tinned tuna.
40 minutesApple, pear, cherries, plums, kiwi.
Leafy green and cruciferous vegetables i.e. bok choy, broccoli, cauliflower, kale.
45 minutesWhole egg
50 minutesRoot vegetables i.e. beetroot, carrot and parsnip.Oily fish i.e. mackerel, salmon, sardines, tuna, whitebait.
60 minutesStarchy vegetables i.e. butternut, corn, sweet potatoes, potatoes and chestnuts.
90 minutesSkimmed milk.
Low-fat cheese products.
Brown rice, buckwheat, oats and cornmeal.
2 hoursCottage cheese.
Soft cheeses.
Pulses and beans i.e. black beans, chickpeas, lentils, red kidney beans and soybeans.
All high-fat seeds i.e. pumpkin, sesame, sunflower.
Chicken and turkey.
3 hoursNuts i.e. legume peanuts and all other nuts like almonds, brazils, cashews, pecans and walnuts.
4 hoursBeef and lamb.
5 hoursHard cheeses.Pork.

Add Cystic Fibrosis to the exempt from prescription charges list

Please click here to sign the petition

People with certain medical conditions are exempt from paying prescription charges. However, the list of exempt conditions does not include cystic fibrosis. This is because the exempt list was drawn up over 40 years ago, in 1968, when most children with cystic fibrosis did not live until adulthood.

Fortunately, the outlook for people with cystic fibrosis has improved markedly since then and most people with cystic fibrosis live until adulthood, although still with a reduced life expectancy compared with the population as a whole.

However, the list of exempt conditions has not been properly revised since 1968 and therefore does not take account of this.

Many people with cystic fibrosis have to pay for all of their prescriptions unless they develop diabetes, a complication of cystic fibrosis that affects over 30% of people with cystic fibrosis and which is included on the exempt list.

The increasing ageing cystic fibrosis population over the years is as a result of improved treatments. This strongly demonstrates the exempt list is over 40 years out of date and cystic fibrosis should now be included.

A time for the Cystic Fibrosis community to celebrate…

Today I’ve had news that NHS England has reached a deal with Orkambi manufacturers Vertex Pharmaceuticals after months of talks.
 
This was brought to my attention through the Cystic Fibrosis (CF) clinic I attend after it was announced on BBC News (see link).
 
https://www.bbc.co.uk/news/health-50144742
 
CF is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections.
 
The effects of CF reduce the quality of life of patients as they age and whilst over the years the quality of life and average life expectancy has improved due to advancing treatments, the research into new treatments will always be ongoing that will eventually see CF being cured.
 
Orkambi is currently the closest to a cure for CF. Though until now has been offered to patients on compassionate grounds. Either as a result of a drop in lung function or as a result of volunteering to take part in an Orkambi related drug study.
 
I’ve been taking Orkambi since January 2017 on compassionate grounds after taking part in a drug study.
 
Within a week commencing the drug, I found I was able to breathe easier and the first month saw a vast improvement with my endurance. Now my endurance is back to how it was 5 years ago.
 
You can say today’s news has been a huge welcome and something worth celebrating about.

Endurance Test

Wednesday, 16 October 2019

Today at the CF clinic I did an endurance test, something I do as part of my annual assessment to see if changes to my treatment are required. Usually, there are minor tweaks. Mainly new and better treatment that can replace one or more treatments I’m already on.

Anyway, I’m digressing here. Part of my lung function is to do an endurance test to see how my lungs work during cardio. This is done on an exercise bike whereby I’m attached to a computer that monitors my breathing, oxygen intake, carbon dioxide outtake, pulse rate, etc.

Last year my endurance improved compared to the previous year despite the fact I was unknowingly unwell at the time. This year with how well I’ve been due to a few changes in treatment, keeping on top of regular exercise, progressing with workouts and maintaining a healthy diet, my endurance test, as expected, showed a vast improvement in my lung function.

Improvements include:

  • controlled breathing during cardio exercise
  • opening my airways and lungs more and taking in more oxygen and expelling more carbon dioxide
  • lung function increased from 31% as recorded last year to 52 %
  • performance on the exercise bike where I was able to push myself further

Overall I was really made up with the outcome of this, which has boosted my confidence even more for pushing myself whilst at the gym.

I didn’t need the endurance test to show vast improvements in lung function. At the gym with the Personal Trainer, I manage to do approx 1 full workout and half of a second workout in an hour. The results get me breathing harder and quick recovery timing. The Personal Trainer often comments how I’m able to do that bit more, but need to be more confident, which is one thing I’m working on.

Now I’ve done the endurance test and seen how much lung function improvements have been made over the last year, this alone has given my confidence a boost.