65 Roses?....A beautiful way of saying Cystic Fibrosis, however does not make CF any more beautiful. My wish is to be standing untarnished, unbreakable, breathing easily.... A blog that is about my day to day life, as well as trying to cope with my illness Cystic Fibrosis. There will be no hold backs just me...out in the open, hope you enjoy! xXx

Monday, 2 July 2012

vanity vs health

Day 16, in the NHS House *said in big brother voice*

So as most people will know, following my previous post i was admitted in to hospital..no shock there.
Its been rough going, this blog may sound like a lot of waffle but i will try to update you as best i can:

Thankfully i made it to my friends wedding, which was the reason i was putting of coming in to hospital, im so glad i got to go it was a beautiful ceremony and the bride looked stunning, as expected i struggled, but did not want to miss it, i survived the day on painkillers and hot cups of tea. Lots of people were looking at me strangely must have been wondering why a young girl was cradling pots of tea when there was an open bar, but i was just glad i was there :)
When i got home that friday night i felt like my lungs had been torn in half i hobbled up to bed and went to sleep in an instant.

When i woke Saturday morning the pain in my lungs was excruciating, i could only lay with a pillow under my left side, i was arched over the pillow with my legs drawn in tight, i couldn't move my breathing was very shallow. I got martin to ring my mum as i always want mum or dad when im ill, such a kid lol,when she got there she put her foot down and demanded i rung the hospital but i was adamant i wouldn't be admitted at the weekend as there is limited staff. She called anyway and spoke to the on call doctor he wasn't to sure what to do so phoned my consultant who said bring her up straight away. With limited movement getting up and packing a bag was difficult. My dad drove me to the hospital and wheeled me up to the ward where the doctor was already waiting. He immediately done my observations. My heart rate was 142 my oxygen levels 88, temperature was 38.4
I got straight in bed to rest and was started on 4 liters of oxygen which quite quickly took my o2 levels up to 92.
2 Intravenous Antibiotics were started and 1 Antibiotic nebuliser was given. Lots of blood was taken for cultures to figure out infection levels and to see why i was spiking such high temps.
I cant really tell you of much that happened until the Tuesday as i slept day and night, waking briefly to see the family.
From the start of this infection i hadn't eaten so my weight dropped from a reasonably acceptable 7 stone 9 to a very unacceptable 6 stone 2. All of the team were very worried that they hadn't seen one piece of food or drink pass my lips in days, even the catering staff seemed concerned as i would usually order quite a lot of food but the thought of having to eat turned my stomach i just felt to poorly.

When i met with my team on the Monday my Dr, Dr Kuitert assured me she would get me feeling better so i put my trust in her and her knowledge and slept for a further five days why the nursing staff administered all i needed

Jumping forward a week to the following Thursday i again met with Dr kuitert. with just over a week and no improvement, still just blowing 30% lung function and o2 sitting stubborn at 92 but now on 2 liters of oxygen she decided to add in a 4th antibiotic started to try to bring the temperature down and with my infection levels in my blood sky high they knew lots of help was needed.
 I was also started on a drug called Megace. Megace is traditionally used to treat women with breast or cervical cancer but a side effect of it is increased appetite and weight gain so it is used in CF when all else doesn't seem to be working. My tube feeding regime was also increased by 1500 a day. I had a meeting with the psychologist and dietician who both agreed was as much mental as it is physical. They explained to me that i had gone so long not eating my stomach had shrunk to the size of a walnut. Also the brain somehow switches of its receptors to hunger as it forget what it feels like, so i never actually felt the need for food. If i did eat i felt sick and full so quickly so in turn ate even less, bit of a circle really.
In todays ward round the option of a PEG was offered to me. This is a small tube that goes directly into the stomach with a kind of cap that you can open and close to connect the feed to. The tube is surgically inserted by making a hole in the skin through to the muscle and stomach lining where it then sits in the stomach. It eliminates the need for an NG tube which is a temporary tube that is placed up the nose, down the throat and in to the stomach. The difference being that it is a more permanent measure and much less uncomfortable than having to pass a tube down every night. The Peg does come with its own problems, the main one being that the cap is visible on the belly, its like a plastic lid so can be seen if wearing tight clothing or going swimming etc which i love to do. Its something i need to think about, its a case of vanity over health which unfortunately is the case for many CF patients, especially women. 

Im going to leave this blog there, im having a bit of writers blog and am finding it hard to piece things together especially as i keep being disturbed
Hope i wasn't to boring :)