Back for Good

Im Back !!

I have been very busy recently. I have finally finished university despite many hurdles being in my way.
In May ( and just for 4 day before my family holiday and in the middle of my assignment writting) i was diagnosed with Pleurisy so i was really poorly. My family holiday was amazing though. We went to Haven in Bogner Regis for 5 days and the weather was lovely.

In my spare time I run a small charity to support children and young people with special educational needs and disabilities in my local town. Take a look at www.haziedays.co.uk. Hazie Days had its launch party on 31st May and it went really well.

When i last saw my consultant they said that my inhalers haven't improved my peak flow reading so they have up-ed my inhalers. They said that my echocarigram came back fine which is a big relief.

In 2 weeks time im going to Wireless Festival with my best friend so i will blog about that on my return :D

Hope you are all well

Where have I been??

Hi everyone sorry for the lack of posting lately, here's my update

I was quite poorly for about 6 weeks it started with a cold which kept coming back then I had conjunctivitis in both eyes which was not pleasant. Then all colds I had caused fluid to build up behind my ears which is very very painful. I also had a bad tummy which turned out to be an allergy to gluten so I have new food. 

I had my consultants appointment this week and was very happy to hear that my heart is healthy after my echogram. So my heart has not experienced any damage which is a huge relieve. My current inhalers seem to take the edge of my breathless- ness a little but my peak flow showed no improvement at all. So my consultant has up-ed the strength. I am being sent to another lung function test which is always interesting as I get the giggles. Opps!! 

I went to London last weekend as I work on a research project as a young researcher exploring how young people with disabilities are involved in decisions about services they use. I've made some amazing friends there and really enjoy my trips. 

I'm in my final year of university so I'm working really hard on my dissertation project which is a research project into how children with a physical disability are included in play and lunch time. 

Hope you are all well x 

COPD meets the germlings

It's week 2 of my final semester at university. I am very lucky that my university have are very supportive  and despite my illness they believe in me and do what they can to help me succeed. 

COPD means that I am vulnerable to illnesses such as colds and coughs, viruses and bugs. My career choice of working with children doesn't help but it's my dream job and there's nothing in the world I'd rather do. However there are two weeks in the uni calendar I know I will be poorly -Week 2 of semester 1 and week 2 of semester 2. 

The end of last week I felt the sore throat kicking in and I knew where this was going.  So I'm cuddled up in bed, eating ice cream ( to soothe a red raw throat) feeling a bit sorry for my self. 

However my sick day won't be totally wasted as I will continue to to work on my final year dissertation project and do my homework. 

If anyone has any tips on how to shift this cold a bit quicker I will try most things :) 

Something Random: all I love right now

So you've heard about me and my medical life so I thought I'd give this blog the personal touch and share some of the amazing things I've brought recently :) 

Firstly, is my new despicable me phone case. I love minions :) imported from Hong Kong thanks to amazon :)

My second thing to share with you is more minions. My nan knitted me a minion for Christmas the one on the left and the one on the right is called Dave and was brought for me by someone very special to me after I got my COPD diagnosis and was feeling down in the dumps. Dave goes on lots of adventures with me.

At the moment I am reading this book. I'm studying for a degree in education and feel it is very sad that  things have to get this bad just so girls can go to school. 

This is my favourite thing to wear right now. It goes nicely over a long sleeve top and set me back a whole £8 from Asda. So many people compliment me on it. Not bad for a bargain 

My final share is for a classic that never gets old. I absolutely love Mary Popping and after being take to see Saving Mr Banks as a per hospital appointment treat I realised I didn't have the DVD. So I brought it :)

Xxxx 

My busy week

Despite my plan to be good and update this blog on a regular basis this week has been very busy. 

This week was exam week at university and I had two assessed group presentations. I am studying for a degree in Education and pick modules in the areas of special educational needs and early years education. One of my presentation was about tackling the issue of NEETS and the second was about including children with special needs in PSHE teaching. 

This week I also had an echocardiogram which is an ultra scan of the heart. It is advertised to be a painless procedure, it is painless just uncomfortable, I was left with some bruising. To have this done you have to lie on your left side for about 30mins. The ultra sound jelly is a freezing though. I was very nervous that something could be wrong with my heart and was disappointed they couldn't tell me anything after especially when my next appointment with my consultant isn't until march. But I guess they would phone me if there is a problem. 

I have also been to work, I work at an inclusive day nursery, a job I absolutely love. It's so reward and i always go home with something to smile about. 

Xxx 

My Journey to date

I was born in August 1991. A healthy baby weighing 7pound 7. I had a pretty normal childhood despite having epilepsy and dyslexia. I was bright and enjoyed school and playing outside. Growing up I didn't really have any signs of being particularly poorly. I had my first operation when I was 12 to have my tonsils taken out but that was the extent of medical interventions. 

Through out my child hood I was a very active child taking part in dance, netball, taekwondo, ice dancing and enjoyed going to the local swimming pool. At the age of 16 I found my love for ballroom dancing and competed at regional and national level. 

At the age of 18 (2010) I was enjoying my summer break after a long first year of university studying for a degree in social work. A degree which i did not finish. I had booked a holiday with my dancing friends and was very excited. 2 days before this holiday I agreed to meet an old friend from way back in London. 

It was up on arriving in London that I realised something was wrong. I was in so much pain I could hardly concentrate. Pains in my chest so bad I thought I was going to die. I stopped in a hotel to catch my breath but they quickly saw I needed more then a sit down and phoned 999. I was blue lighted to the local hospital where after 4 hours I was diagnosed with air outside my lung on the left side. This was aspirated to relief the pressure. For those you who don't know that this, I had a local anesthetic and a needle was passed between my ribs to syringe the air out. The doctors said that this kind of injury can occur in active people so a fall while Ice skating or a lift while dancing could be the source of my problem and Itwas unlikely to ever happen again. 

However 9 days later it did happen again, I had been resting as advised by the doctor and was actually asleep on the sofa when the pain struck. This time I was blue lighted to my local hospital where they found my right lung was barely visible on the X-ray and my left lung had a small collection of air outside it. Despite this my oxygen was 99%. After a 6 hour precedure a chest drain was put into my right side to slowly ( over 5 days) release the air in my chest allowing my lung to reinflate. This is an uncomfortable process.

A specialist for the heart and lung research centre heard about me and felt there something more to this story then dancer damage and insisted I was sent for a CT scan. This found major irregularities in my lung wall structure and part of my lung was completely exposed. So after 6 weeks healing time, feeling very poorly and sleepy I was sent to Oxford from my home town of Basingstoke to have pironeering surgery to join my lung to the pulural lining (I will leave out the details in case your reading this eating your dinner) to protect the lungs fragile surface. Following this i was told in 6 months it would be like it never happened,

But this wasn't the case. I never returned to normality and in 2012 I began to notice that things were not how they should be, I was struggling a bit and found myself prone to infection. This was passed off as post operation scarring pain and I would improve. I finally got the attention of my GP in sept 2013 when I report coughing up blood and now finding walking and going upstairs very difficult. I Was referred to a local consultant and Lung function tests showed this was because I had lung disease which was impacting on my small airways.

I am currently waiting for a scan of heart to check for damage. I take an inhaler everyday and have been using my blue badge more. I am learning to listen to my body and learn my limits. I'm not perfect but I'm getting there 

Xxx 

Hello :)

Hello 

Thank you for reading my blog. My name is Marti, I'm 22 and was diagnosed with chronic lung disease or COPD in nov 2013. I also have epilepsy, a high risk of lung collapse, complex migraines and dyslexia. Over the years I have learnt to be proud of my disability and be happy to be different. 

When I was diagnosed with COPD I was shocked and scared. I wanted to know what life is like for a young person with COPD but couldn't find much. I used to be a competitive ballroom and Latin dancer, I lived to dance and was very active before I was poorly so this felt like a death sentence.

This blog aims to show what life is like for me and that life carries on even with this diagnosis. I will share the good, the bad and all in between with some randoms thrown in too

Please feel free to contact me I hope to learn some about this condition and am open to advice and ideas 

Xx