Thursday, 8 May 2014

Living with a Ventriculoperitoneal (VP) shunt & Bronchitis Lung Disease.

This afternoon I was talking to a friend & I realized that in the whole time I have been doing this blog, (since October 2011) I have never really spoke about myself & the things I have been through in my life, as such! so tonight I thought that I would do a post on myself, & before anybody gets on their "high horses", jump down sweetie, I haven't done this for the attention! ;) 

On September 30th, 1987 I was born at 27 & half weeks. I was born with hydrocephalus (excess fluid on the brain) & because I was also very premature, my lungs weren't properly formed & were therefore just a huge mass that didn't work. Also, my placenta came away inside my mothers womb, so I was actually born dead. 

Thankfully surgeons manage to get my heart beating again, but I suffered a 50% ventricular brain hemorrhage & it was a race against time to save my life. I was born in Barrow in Furness Cumbria, & after they managed to get me breathing again & stable I was then transferred over to Leeds General infirmary by ambulance were I was to undergo major brain surgery to get a shunt placed in my head to start helping drain the excess fluid from my brain. The journey to Leeds was 3 hours long, to which a paramedic spent the whole time hand pumping air into my lungs with a bag to keep me alive because they were so fragile that if they had used a machine my lungs would have quite literally blown up! 

Once I arrived at Leeds I had to have a procedure (which I am not sure of the name) that meant a needle was placed into the center of my brain to ease the pressure & release as much fluid as possible before I had surgery. I was only a few hours old when this was done. I then had to go through a 9 hour surgery to get the shunt placed into my skull so that it could do the job of draining the fluid. Altogether I spent 7 months in Leeds General Neonatal Unit recovering from a brain hemorrhage & having major brain surgery! I was one very sick but very lucky baby. I manage to pull through & I am here to tell my story. 

When I was 16 years old, doctors were going to operate & remove the bottom portions of my lungs as they thought that was were the disease sat, only, when they did x-ray's it was revealed that the disease is actually right through both of my lungs. I don't know many people that also have to live with a disease like this, (other than babies) so I don't tend to talk about it & not many people know about what I have so when I d get talking about things like this & I tell people that I am entitled to things like "disability living allowance" they automatically turn their nose up at me because I guess to them, if it's not something "visible" it's not a disability?! 

Today, I am almost 27 years old & although I have been left with severe lung disease throughout both of my lungs & to this day, I still live with that shunt in my skull draining fluid, I don't let it define or defeat me! I live life to the fullest the best I can. Unlike some people that suffer with my condition, I have been blessed & have been able to carry two children, both of which I adore! a lot of people with a condition like mine aren't strong enough to do so, so I do feel very lucky to have been able to have that pleasure!

In 2010 when my son was born, as most of you know if you have been keeping up with my blog, he was also born with a lung condition (CCAM) Congenital Cystic Adenomatoid malformation of the lung & when he had his surgery at 14 months old to remove the bottom lobe of his right lung, I was told by his consultant that actually, my condition is far more worse than his! Now he's had surgery, he will go on to live a long happy & healthy life! don't get me wrong, it wasn't nice being told my lungs are basically heap of junk ;) but it was very reassuring to know that my son was going to be okay! 

I was told as a teenager that at some point in my life I may end up needing a full lung transplant, but I also may not. I feel truly blessed that for now, my lungs are holding out on me & are letting me live a rather "normal" life because I have seen what my condition can do at it's worst, so I am grateful that I am classed as "stable" for the time being! 
I have an amazing husband, two children (child number two due in July 2014) & although I live with constant chest infections, having to have antibiotics pumped into me & inhalers that I have to take, I am very happy & I am very grateful for my life because really, I shouldn't be here. 

I hope this doesn't look like a sob story because it's truly not, I just wanted to make people aware that living with a disease/condition does not make you any different to anybody else. 

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