Hello, my name is Georgina but everyone calls me George! My little Nickname from my husband is Sprog so thats where the blog name comes in! Im now 28, Married to my gorgeous husband lee since 2012, i have an amazing mum and family and very cute, skinny awkward dog called Mason! and another chubby awkward doggy called Archie! they are both whippets and are completely my babies. I live in Surrey UK.
I Have Cystic Fibrosis and was diagnosed when I was 18 months old, I grew up spending a lot of my life in and out of hospital, or doing home intravenous antibiotics at home to carry on a normal life as can be with someone who has CF. As a child I went to GOSH/ Ashford Hospital, then The Royal Brompton/St peters in my teens and transferred to full care on the Adult Ward at The Royal Brompton Until November 2014 where I Transferred to the CF Unit at Frimley Park Hospital.
I started this blog back in January 2012. At first i didnt want this to be a public blog, just some where i could write my thoughts and feelings, sort of a diary and journey through my time getting on and waiting on the transplant list.
A family member found out about it and shared it on a social media site and well since then i have began to post and share ever since! which i am so glad i did now!!
My life has changed and taken an unexpected turn (for the better amd worse at times)!
I was listed for Transplant the first time in Dec 2011, waited 7 months whilst deteriorating rapidly, until i was introduced to a Drug called Kalydeco (Ivacaftor) specific for my Mutation G551D which only 4% of the CF population have. (i also have DF508 which is the most common CF mutation)
Since starting that back in July 13th 2012 i took myself off the active transplant list 3 weeks after starting the drug, my lung function increased from 12-15% to was stabilising between 21-23%. i hardly used oxygen any more, unlike pre kayldeco i was on it 24/7, i hardly used a wheelchair unless having bad days and there is alot of walking.
After that lovely honeymoon period of Kalydeco which done me well I last a good 2 years where I got married had some lovely holidays and fun nights out, was a bridesmaid twice to my gorgeous cousins, life wasn't perfect my lungs still had a lot of damage that Kalydeco couldn't undo but I was stuck on oxygen!
so summer 2014 I started to decline again, I stuggled with the change and I was stronger recommended to reactivate myself back on the transplant list. I found it a lot harder this time around, I learnt a lot more about transplants and the risks, and I wasn't ready for the Kalydeco honeymoon period to be over, but my body was weaker and I was back to using the wheelchair and oxygen again!
After an emotional few months and agreeing that my time had come again, I made the choice to go back on the list September 2014, and I regret not joining sooner!
cut along story short I declined a lot in the 11 months I waited in march I started getting problems with my Supeior vena cava vein, it was narrowing a lot whch resulted in my port which had been fitted 10 years ago being removed, a balloon to open up the vein. that lasted a few weeks then the vein again became narrowed, so it was decided from drs at frimley and harefield that I should have a stent to keep the vein open and a new port fitted!
Basically they fitted the port, no problem and fitted the stent, which 2 days after fell into my heart this was July 2015. I then had to be abluanced to Harefield as Frimley didn't want to touch me after that!
Harefield tried to remove the stent which was in my right atrium. it was unseucessful, got stuck and I ended up ventilated in intensive care at harefield from the Tuesday 28th till the Friday! and was told I was a very lucky girl! and also told that I was unable to leave harefield until I got my new lungs!
I declined rapidly after that, my stent was leaving my resting heart rate at 150+ I couldn't move without my heart racing and I my breathing became so bad I was constantly on a bipap machine, and doing nebulisers and saline just to give me relieve as my lungs were just giving up on me, I was determined to not give up, but I came close so many times, the struggle was like nothing ive ever felt before, but I have too much to live for and im too stubborn to give up!
I had 3 false alarms, first was on the 3rd august, then they came days apart and finally had my transplant on the 19th august 2015! I also had the stent removed, I now have amazing lungs!
so heres to my new exciting life with new lungs and a future to look forward to with my husband, doggys and family!
however long I get with these new lungs, I intend to make them amazing and live life to the absolute fullest!!
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