Wednesday, 26 October 2011

Im back.....and breathing!!!!

Wow!!! Its been just over 3 months since I last blogged, and im sorry, but I have a very good reason...I had my double lung transplant!!!! It WAS NOT an easy ride as I will soon tell you but Im here and im happy. I will have to do this in a few different blogs so tonight I will do the 1st part.

Scott went on holiday to Ibiza with a few of the boys at the start of July for a week. During this week, I had no energy and slept on the sofa for most nights only just managing to get up the stairs to go to the toilet. We called the hospital and they took me to the ward and did blood gases. They needed an arterial blood gas to check my carbon dioxide levels, and this was the 1st time i was made to have one (before i had got away with having ear cutting). They numbed it with cold spray and it was sky high so i was taken straight to the high dependancy unit and connected up to loads of tubes and an NIV mask which works with your breathing. When you breathe in, it forces air into your lungs to make them expand and get rid of the carbon dioxide. I was in there for 2 weeks and spent my 23rd birthday in HDU - I got an ipad 2 though :) The blood gases came down and I was able to go home. A few pics....
I was out for a few days but started to have the same symptoms again within a few days but i managed to drag myself to the pub as my step-sis Emma had arranged a big fundraising cake-bake sale. It was brilliant - there was a auction with prizes that companies had donated, cake sale, bbq, face painting and raffle. Its only a small pub but it was packed and raised over £1000 which all went to the CF Trust. After that weekend, I was rushed in to Lewisham again as i had to call my mum home from work as i couldnt take it anymore - i couldnt even crawl up the stairs and could just about get off the sofa but wasnt eating and couldnt hardly keep my eyes open. Lance met us at the doors with a wheelchair and I was back to HDU and back on the NIV. I stayed on this for a few days, meanwhile developing severe pain attacks. I have never had them before but they are horrible - my sats were fine but when i had an attack it felt like my airways had closed and i was gasping for breath. I ended up being too scared to take my NIV off so was quickly having a drink and strapping it back on again.

I didnt know this at the time but.....the doctor took my mum into a room and told her that they couldnt get the gases down and that there was nothing more they could do for me. She was given 2 options: to put me on machines until i passed away or they could just make me comfortable. Mum was in shock as she didnt realise it was that serious because we managed to get the gases down before. She asked them if they had rang Harefield as i was on the transplant list but they said no, so she made them ring and Harefield accepted me. My mum called Danny, Scott and daddy up to the hospital to see me before i went in the ambulance. I was blue-lighted to Harefield with a ressertaion team in the back with me and mum and scott had to meet us there.

At Harefield I was attached to more bloody tubes and wires and was put on a machine called the Novalung. I was laughing when I got to Harefield because of all the stress and being so ill, i had wee'd myself in the ambulance which i found amazing - i find humour in the strangest things!! Anyway, this machine is 2 thick tubes; one in each groin, and it cleans your blood of the carbon dioxide. I dont remember having it put in but it was sore and i wasnt able to move my legs. They had to be straight and obviously i had to just lay on my back which was highly uncomfortable. I was on this for 2 weeks until I suddenly struggled more to breathe as my lungs deteriorated even more.

This is when I was put on a different machine called the Ecmo. This machine does the same as the Novalung but it also adds oxygen to the blood aswell. One of the tubes was take out my groin and put into my neck. This procedure should take under an hour but for me it took 9 hours.
Arriving at Harefield
The Novalung
The Ecmo tube in my neck

It took 9 hours because they had lots of problems. They couldnt get the tube into my neck and they were shoving it in and both men tried and were sweating and struggling. They eventually got it in and turned on the machine but it said 'no flow' so they had to cut the tubes and flush it with heprin to get rid of blood clotting in the tube....this happened 3 times. I also had to be bagged twice because my sats dropped to 30 and everything was blue. Then when they took the tube out my groin, they had to press hard on the hole to stop the blood but then realised the dressing pack had something missing. They had to get another pack and clamp and he was pushing really hard until it was sorted. So this event took all night and mum eventually left at 9am traumatised....oh forgot to mention that i was AWAKE through it all with no painkillers as it was too risky to sedate or ventilate me.

I was on the ecmo for a week and a half until I got the call for new lungs. During these 3 and half weeks at Harefield i had 2 false calls for lungs; the first were too big, the second were too damaged and the third were perfect. It was Saturday 20th August at 6am when the co-ordinator came in to say that they were going to look at some lungs. We then had to wait until 11am when they confirmed that the lungs were great and i was going to have a transplant. Mum screamed with joy and Scott was so pleased. We rang dad and he was running the pub and he told me they all cheered and clapped and we managed to get hold of my bro too. I remember feeling terrified and they put me to sleep in my room as i had too much equipment to move. Then i went to sleepy night nights xx

Part 2: After the transplant is coming in the next few days!!!

x Lots of love x