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USA FDA approves Trikafta for 2-6 year oldsWhat a time to be alive ❤️
02/05/2023

USA FDA approves Trikafta for 2-6 year olds
What a time to be alive ❤️

Joel is still suffering from chronic fatigue but touch wood it’s nowhere near as bad as it was when he started Trikafta ...
02/05/2023

Joel is still suffering from chronic fatigue but touch wood it’s nowhere near as bad as it was when he started Trikafta the first time.
He’s able to do a bit during the day and helps hang out washing, bring it in and fold it and put I’m our bedrooms.
He’s able to play with the dogs every day now and is getting a bit of sun every day.
His appetite has dropped off a bit last few days but he seems to have a virus right now.
Salbutemol is helping when he starts coughing a bit.
Physio is going well.
Not clearing much any more.
The day 1 purge wasn’t quite as much as it was first time in Trikafta

Hanging with cousin Alex Bellotti in his roomOne floor above Joel’s room in Sir Charles Gairdner Hospital.
19/04/2023

Hanging with cousin Alex Bellotti in his room
One floor above Joel’s room in Sir Charles Gairdner Hospital.

Day 1 on Trikafta - Take 2Weight: 47.5kgHeight: 168cmFEV1: 81%
19/04/2023

Day 1 on Trikafta - Take 2
Weight: 47.5kg
Height: 168cm
FEV1: 81%

19/04/2023
Joel tried Orkambi a few years ago. There was no change in his overall health.July 2023 Joel started Trikafta.Day 1 he w...
19/04/2023

Joel tried Orkambi a few years ago. There was no change in his overall health.
July 2023 Joel started Trikafta.
Day 1 he went through the purge and coughed up a lot of dirty coloured mucus which is mucus that has been laying around in the lungs.
This happens due to salt and chloride ion transport being restored which hydrates the airways and results in the production of normal mucus.
Every month Joel’s energy levels got worse. By the 7th month he couldn’t even get out of bed.
Trikafta was stopped and he had a one month break before starting Symdeko.
Joel has been on Symdeko for about 8 weeks.
Yesterday we found out his sweat chloride tested hadn’t improved which meant Symdeko wasn’t working.
He’s currently having his second time up in the adult hospital and after a lengthy discussion I encouraged Joel to give Trikafta another go.
If he starts suffering lethargy we will know for sure it’s Trikafta causing it and we can look at reversing his doses.
Taking the am tablets at night and the pm tablet in the morning.
If he doesn’t suffer lethargy then we will know it’s the new bug in his lungs.
Fingers crossed.
Tomorrow he is having IVIg in his room.
Then he’ll be discharged in HITH and we’ll stay in the city with Jeslyn, our great niece Shayli and her partner and continue IVs until next Wednesday.
Pros and Cons of sissy going to university in the city ❤️

Bill Shorten announced some important and necessary changes today to help 'reboot' the NDIS. His 6 point plan outlined s...
19/04/2023

Bill Shorten announced some important and necessary changes today to help 'reboot' the NDIS. His 6 point plan outlined systemic changes that will help ensure the is sustainable and can continue to provide funding and support to Australians with a disability who need it most.

NDIS Minister Bill Shorten conceded the $34 billion scheme – which is costing 14 per cent more each year – had lost its way, as he outlined a suite of changes.

Meningacoccal B 🥲
19/04/2023

Meningacoccal B 🥲

The Queensland law graduate had just returned from a girls’ trip when she developed a temperature. 📍 DETAILS: 7news.link/FamilysPlea

23/08/2022

Day 14 on Trikafta:
There has been some improvement in Joel’s mental health and considering he’s feeling quite lethargic, weak and nauseated, he is coping tremendously well.
He knows it will pass.
He knows that the drug affects people differently.
He sometimes gets a little bit of energy at night and wants to do his bit to contribute to the household.
Even though he’s feeling pretty lousy he still carries loads of washing out and hangs them up for me most days.
He sweeps once a week and goes out and plays with the dogs almost every afternoon.
He is really enjoying watching Facebook Watch and TikTok videos.
Shoutout to my beautiful cousins Lois Gread and cuzzy bro Alex Bellotti for making him laugh.
Every. Day.
Much appreciated ❤️

Remembering Matt ScalesMatt had a huge talent for writing lyrics and songs, he had a way of making people laugh, gave hi...
09/05/2022

Remembering Matt Scales
Matt had a huge talent for writing lyrics and songs, he had a way of making people laugh, gave his attention to all those he met and made a huge impact on the many who adored him. The talent, ambition and courage he showed, left an everlasting impression and impact on the many hundreds of people he met in his life.What many people didn’t know was that Matt had Cystic Fibrosis. He led by example and encouraged all those who suffered with the illness to ‘go after the things you want in life’ and not to let the disease dictate or hold you back. The song ‘I Wish’ (later to become ‘Breathe’) was written by Matt many years ago and was performed at the Cystic Fibrosis awards. Sadly Matt died in April 2007 after a three month battle with an superbug infection that is common in people with Cystic Fibrosis.
Thank you for the music Matt, and thank you for this song.
Thank you Trevor and Stephanie for making this remix happen.

Looking very grown up ❤️
29/04/2022

Looking very grown up ❤️

25/02/2022

WARNING: for those with weak stomachs.
This post about mucus
I thought we should post this again.
It’s a great video that explains the lungs function very well.
We have been told some amazing facts over the years that made understanding their function even easier.
We add oil to the engine in our car to lubricate pistons, valves, and other components to make sure things turn and travel smoothly and to minimise friction which reduces wear.
Secretions are produced all through our body for similar reasons.
Pancreatic secretions are enzymes which travel to the small intestines which where we absorb fat.
The lungs make mucus which lubricate the airways and keep the lungs moist.
Coughing and sneezing actually helps us to expel germs out of our airways.
People with CF a make more mucus than the aacerage person and it’s thick and sticky.
Everyone has a CFTR Membrane. It’s a protein that regulates the flow of salt and chloride ions which hydrate secretions to keep them flowing and doing their job.
People with CF a have a gene mutation that affects the CFTR.m and makes it malfunction or not work at all
It stands for Cystic Fibrosis Transmembrane conductance Regulator. So their mucus isn’t receiving hydration so it becomes thick and sticky and sticks to the walls of the lungs. Pancreatic secretions don’t flow properly in many people with CF so this causes pancreatic insufficiency.
That is why Joel has to take man made enzymes in the form of capsules before everything he eats to be able to absorb fat, proteins and carbs.

To hydrate his lungs, Joel has hypertonic saline in a nebulised every morning and night.
Joel used to do 20 mins of hypersal through a neb and then do PEP airway clearance on its own morning and night.
The affects of hypersal wouldn’t last the full duration of physio, so scientists modifified nebuliser pots so that PEP devices sit straight on top and this combines hydration and therapy, which would save people with CF 20 mins morning and night.
I did my research years ago and found out that it takes 10 mins for hypersal to fully hydrate the lungs using the standard Pari Nebuliser.
This made me realise the quickest way was t the most efficient way.
So Joel has 20 mins hypersal THEN combines PEP and hypersal.
That’s when he really started clearing mucus, and he has stuck to his regime every since.
For years I’d try to explain that even when he’s well he makes very thick and sticky mucus. So much so that you absolutely can not flick it off your finger.
I will never forget the day head when the head of Respiratory Medicine told me that they now know that the bacteria Stenotrophomonas makes people with CF produce even more thick sticky mucus.
Joel’s Dr was the only person who said to me, Tou always said that didn’t you?
I was quite sure if it too because he’d been making this thicker dirty yellow coloured gunk from about 9 or 10 years of age, and that’s when I was told he had colonised Steno.
I also used to think his mucus would turn a certain colour for a certain bug.
I wasn’t laughed at, but I received funny looks.
Well we now know that staph makes your mucus turn bright yellow.
Pseudomomas makes it turn green and Steno makes it turn a dirty yellow colour .
It’ll never forget the first time we pulled up at the new Perth children’s hospital.
There’s a Poo chart called the Bristol stool chart. It helps Drs identify level of hydration in your poo.
My first thought when I looked at OCH was it looks like a CF Sputum Colour chart 🤣🤣🤣
Well, green is my favourite colour 🤣

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