Big decision for my treatment

Hey again :) 

So I decided to make the blog as i had to make a big decision over past few months about my treatment. I'm currently on Iloprost i teak it by inhaling it into my lungs using a nebuliser.  Iloprost has to be taken about six or seven times a day. This is because it lasts about 1 or 2 hours in the bloodstream. im currently teaking this 6x but i get about 4 or 5 a day. Iv been on this for around 15 years but it used to big a big box that would of carried in a back pack but as time went on got smaller and smaller.

It looks a bit like this now :)  

But iv made a big decision to get a hickman line (pump) as doctors dont think im getting enough from my nebuliser to do day to day things so ill explain wee bit about it:
Iloprost is given intravenously (injected directly into a vein) via a permanent catheter (a thin, flexible tube that is inserted into a vein). This catheter is called a Hickman line.

Iloprost is continuously pumped into the body by a portable, battery-operated pump. It must be given this way because it only lasts for 3–5 minutes in the bloodstream. The pump attaches to the Hickman line via a thin plastic tube. The pump is worn attached to a belt around the waist.

I will be going into hospital for up to 2 weeks at Newcastle upon tyne :( scary as I hate hospitals I never seem to sleep and i don't like it when i'm sharing with people id rather have my own wee room. I will be going over on the 13th may :( but im planing on keeping busy and not think about it. I will be awake when the line is getting put in ill just have some anasthetic to numb around where line will be put in.  I'm not feeling as nervous as I was as one of my friends Stacie has just had her line put in today so it dosent seem as bad and now I sort of know what to expect :D but i'm still a bit  worried. 


Im going to try keep my self busy with tech/college work and car cruises and shows and do a few things to car keep me busy, oh and lots of shopping for stuff to bring with me :D. Thats about it easy was to explain about the hickman line :D 

Jemma Xo

Little bit about me :)

Hey :)

Well first of all you must be checking out my blog so for who doesn't know me I'm Jemma, I'm 19 years old and I'm currently a student and I'm also needing a heart and lung transplant as I have a illness called Pulmonary hypertension :)  
So most of you are probably wanting to know why I'm needing a heart and lung transplant in the future but I'm going share bit more about me.

As I mentioned above I am a student and i am currently studying level 2 beauty therapy :) i do enjoy it but i originally wanted to do hairdressing. I have completed my level 1 hairdressing but then college wouldn't let me on to my level two they used my illness to stop me from doing it with excuse after excuse so they said i could have a place in beauty therapy i wasn't keen on it at the start but I give it a go and now I'm pushing my self to finnish after being off 6 months with not being well over winter :) so hopefully i will get it finished and 
will hopefully get into make up course in September. 

<< Meet snoopy 
So away from tech/college and hospital  i put alot of effort into my car :) yes i do love my car, go to car cruises and shows with a car group called Ni-Vaux iv meat some awesome people at it who look after me when I'm at shows. i like going to car shows and cruises one of the places where i feel i fit in its something i can join in and not feel left out or the odd one out. so I'm still working doing few more things keep me busy for a while :). 







My family has been there for me iv got 1 older sister Lisa and my mum and dad and suppose i could count Junior (our dog) as part of family :) i really don't know where i would be with out them its been a hard 19 years back and forward to hospital,  If it wasn't for my mum and dad i would be here today as plenty of times when iv taken sick they have acted so fast and got me to hospital and have saved my life a number of times, day in day out sorting my medication out making sure i get them all to keep me going and even moving house to a bungalow so i didn't have to climb stairs they done everything to help me live a normal life. 

Now time for the boring part about the illness,  though my mums pregnancy with me everything was fine until the last scan when they realized my heart so when i was born there was a wall missing in my heart so when i was 14 months old i got open heart surgery to correct it but they had to leave a hole in the middle of the wall and then i developed pulmonary hypertension. Northern Ireland didn't really have much care for me so age of 4 they sent me to Newcastle upon tyne hospital that has a pulmonary hypertension team and a transplant team so every 3-6 months it was back and forward to Newcastle then i was around the age of 8-9 when i got sent to great ormand street hospital for sick children in London they had a amazing team who i got on really well with.  Then they stated MRI scans CT scans different drugs different side effects ones that worked ones that didn't. just over 3 years ago they decided to ask if i would get a pacemaker ( pacemaker helps regulate the heart beat)  i said no and everyone was trying to talk me into getting it me being me said no until my granda spoke to me and i agreed to get it done so off to London and got pacemaker all went well it hasn't worked as well as they would of liked it but helped a bit. so now I'm back at Newcastle with being 19 I'm no longer a child :( iv been stable for a while with the amount of tablets I'm on, I'm on nebuliser which which you inhale. It takes about 10 minutes to do and i have to do it around 6 times a day i never get 6 in i get about 4-5 a day, I'm also on  Sildenafil/Revatio/Viagra 40mg 4x a day and ambrisentan 10mg once a day, I'm also on warfin and oxygen over night or when i need,  but my doctor wants to improve my life as with my age I'm doing alot more than i was when i was a child. so in January they asked me would i like to go on a medication called Flolan/Epoprostenol. but my first word was no because this medication isn't a tablet you teak few times a day. Flolan is delivered into the body intravenously, which means it is delivered through a line in a main vain directly into the heart. There is a high risk of infection with where the exit line is but I'm going to make a different post explaining all about it and how i came to deciding to go for it. 

So yea that's really a quick view of my life so I hope you enjoy the stories to come :)