I've been away for ages, i know! I've been so busy with the hospital and college are taking the mick with me, and causing me so much stress, which is causing me to be iller even quicker as well. FUN!
A Q&A has been on the cards for ages now, and I've been wanting to do it for months, I was just waiting for peoples questions, so i went on twitter, facebook and instagram as well as documenting any questions people have asked me in the past so I can help you understand more about me and my CF and CF in general. So here we go...
Q: What actually is CF? (Cystic Fibrosis)
Cystic Fibrosis or CF is the most life threatening inherited disease in the UK. Surprising considering hardly anybody has actually heard about it! It is caused by a single dodgy gene, and as the result parts of the body get clogged with think sticky mucus which will cause chronic infection, especially the lungs and digestive system making it hard to breathe and difficulty digesting food. It also effects organs such as the pancreas, liver, kidneys and even the bones, as the bones can lose density in them. You can't catch CF either, so if i cough around you, I'm not contagious!
Q: How does it affect you and your life?
Cystic fibrosis affects everyone differently, but for many it involves a rigorous daily treatment regime including physiotherapy, oral, nebulised and occasionally intravenous antibiotics, and taking enzyme tablets with food. Some people with CF will have a feeding tube overnight.
For those who are very ill with CF and with very poor lung function, daily life can be a struggle as basic tasks can leave them breathless. Some patients use a wheelchair to get around, and use oxygen to help them breathe.
Q: How many tablets do you take?
God how many times do i get asked this, well overall i probably take over 50 a day, including food enzymes which is only a small proportion
Q: What treatments do you do?
All CFs are different, I personally do 2 different nebs, DnAs twice a day and Ipratropium up to 4 times a day, I used to do colomicin as well but recently became allergic to it, and also Tobi, however I know been switched over to TIP, which is Tobi power inhaled.
I also do breathing control as i struggled with normal airway clearance due to me not being able to take deep breaths and having an irritable cough.
When In hopsital, I have IVs, intense physiotherapy which includes N.I.V.
I also have oxygen when needed.
Q: What are IVS?
IVs are a crucial part of treatment, it is liquid antibiotics either infused or hand pushed into the vein, whether that is through a venflon, Long Line,PIC, Port etc. It then goes into the bloodstream to fight infections
Q: Why are you so skinny and small?
Unfortunately, I struggle to put on weight due to be not being able to digest food properly, So I get fed through a feeding tube over night to help me maintain and even put on weight which will help me fight infections. So when you ask a CF whys there so skinny, don't jump to conclusions because most of us have weight struggles! Why i'm so small...well first I don't have tall parents but secondly CFs puberty it delayed.
Anymore questions or something you don't understand, just let me know, I'll be happy to help
Thanks guys
No comments:
Post a Comment