No More Nebulisers? What's Colobreathe?

Hello!

The Cystic Fibrosis Trust relies strongly on funding to research new medication, continue with gene therapy and make the lifestyle better for those who suffer from CF.

Recently, a new type of medication has been developed to make taking medication faster and more efficient. The new medication is Colobreathe. It's a dry powder inhaler which is used to treat and tackle Pseudomonas lung infection. This can be used instead of the current nebulised form of Colomycin.

The Colobreathe capsule is inserted into the new Turbospin inhaler. The inhaler is no bigger than a pen and can be fitted into a small bag or pocket. After being sealed, all you have to do is breathe in slowing and deeply, inhaling the medication. 

What's great about the Turbospin inhaler is that it's maintenance free! No need to wash it each time after use, such like my current nebuliser. Although you must keep it clean and in a dry place.

It has been designed to make taking your medication as quick and easy as possible. This is another great step forward for the CF Trust and those suffering from Pseudomonas. The change and development of nebulisers since I was little has been vast! From having big box device on the living room floor, making such a loud noise I couldn't hear the TV. Then moving onto e-flow and then onto the i-NEB. Technology is improving and to now have a non electrical item that is easily portable will make such a difference to our lives.
              e-flow 

i-NEB


 Although Colobreathe was first released back in 2013, this is my first week trying it so I plan to write a review in a few weeks time. The pros and cons of how I am finding it compared to the current nebs.

It's very exciting!!

If you like to read up on anymore information please visit the CF TRUST website - http://www.cysticfibrosis.org.uk/

Thanks for reading,

Nx

Instagram - instagram.com/nicskath_
Twitter - Twitter.com/11nicolee

CF Clinic - 9th October 2015

Hello!
On Friday I had a CF clinic appointment. I have these around every 3 months, and this time I thought I would write about how it went for you to have an insight of what happens.

The main reason for having regular updates at hospital is to make sure I am staying well, keeping a good weight, not becoming ill, or needing to change medication. It's a chance for my doctors and nurses to check up on me and see how I am getting on.

Each time I am there I get weighed and measured. This is to make sure I haven't lost weight since my last review and to make sure my weight and height is matching on my growth chart. As I am now 17, I stopped growing over a year ago and so haven't grown any higher than 164.6cm (5foot4). Now that I have stopped growing it is a case of keeping a steady weight and not dropping off suddenly. I have to maintain it, making sure I don't drop below the 50th centile in my growth chart.
My weight has been a little up and down recently, hovering around 55.1kg and 56.5kg. To someone who may not have CF, a few .0kg is not that substantial. However, each kg counts! As soon as I start dropping off it is very hard to put weight back on. Also, the more I weigh, the most fat there is on my body. Therefore I am able to keep me warm and have more energy to fight day to day infections, colds and illnesses and not become so ill. Happy to tell you my weight had improved to 56.9kg! Putting on nearly 1kg in only 3 weeks since last being weighed.

Next I go for a lung function. This is used to measure my Fev1 (Forced Expiratory Volume), how much air I can expel in the first second. If the percentage result is low it can sometimes mean you are tight chested, wheezy or have thick mucus in the airways. Because I do a lot of sport, my Fev1 has never fallen below 73%. I have been able to keep my chest relatively clear. CF patients Fev1 can vary according to how severe their particular condition is.
Since being in hospital back in June, my lung function has slowing increased. After putting on weight while on steroids and just finishing a course of antibiotics, it was slowly on the up! I hadn't hit above 92% for over a year and so my aim by the end of 2015 was to try and get it back to where it used to be. Well, hard work pays off... and after doing extra nebulisers, a long course of steroids and antibiotics, putting on weight and fitting in some AD, I blew a percentage of 95! I was very chuffed with myself as I knew it was possible with a bit of determination, and pushing myself when exercising. (Pictures at the bottom)

Next I sit down with my doctor, CF nurses, dietitian, and physio. We discuss many things including my current medication, how I'm feeling, eating habits, physio technique, AD practice, and what our next step is for the next few months. Also, my doctor listens to my chest and feels my stomach for any sore, uncomfortable or firm areas.

Lastly, I have my HbA1C blood sugar reading taken. This is to check the amount of glucose in my blood stream. If too high (over 6-7) can main I may need to take insulin due to having hyperglycaemia (hyper – when blood glucose rises too high) . Red blood cells live for 8-12 weeks before they are replaced, so by measuring my HbA1C it can tell me how high my blood sugars are on average for last 8-12 weeks. My result was 6.4 which meant that it is ok for now, however diabetes is on its way and so I may be needing to take insulin again in the near future.

Overall my doctor was very pleased with my progress in the last month and allowed me to stop the antibiotics. Also to take 10mg of steroids every other day instead of each day. My dietitian has always loved how much I love my food and was pleased I had put on weight. We mainly talk about my favourite foods at the moment and crazy food challenges we have seen on the internet! I always end up telling him my new fatty snacks that I make at home for him to try! My physio Lucy has always been so pleased with all the sport I do, however I don't always do my AD clearance. So we worked on that and she gave me some tips to maybe breath through a tube as it helps control my breathing.

We discussed Uni and what my plans are for the future. How I am going to adapt and where I am planning to go. We also briefly spoke about my port journey and what the next step is for that too. (Planning on writing a another blog post about that soon).

So, overall it was a very successful clinic! My weight is up, lung function has gone from 88% to 95% in a few weeks! Doctors are happy with my progress.
I'm going back again in a month for a check up and hopefully I am able to come home with same good news!

Thank you so much for reading this mammoth post. I hope you feel very informed and now know a little more of what happens when I go to hospital. If you have any questions please comment below or send me a tweet on Twitter.


Speak soon,

Nx

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Twitter - twitter.com/11nicolee

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