Thursday, 10 September 2015

Transplant and how it came about

Its such a strange and horrible feeling being told you need a transplant i mean what is a transplant? How do you get one? How does it happen? Why is it happening to me?
So many questions go through your head im guessing thats normal but then again whats normal our normal could be different to someone else's normal.
I am going to be telling you about when i first found out i needed a transplant well here goes...
It was around christmas time 2014 and i was at gosh at the time talking about transferring over to the adults team in sheffield  and i had this feeling for months that there was something that the doctors wasn't  telling me so i just came out and said it " what is it? I know there is something your not telling me " i saw the doctor look at my mum and she nodded her head so i thought " how come my mum knows " and then he said " Parris you are going to need a lung transplant " then i just felt my heart sink and i felt tears running down my face and i went " but i thought i was getting better " then i looked at my mum and at this point she was crying and i said " did you know " and she told me all my family knew  at this point i didn't know what to do or say so i just kept quiet , they then asked me if i wanted to know anymore and at this point i didn't , i couldn't stop crying all that day  i kept thinking why i needed one... My mum rang and told my brother about me knowing and he didn't want to believe that his little sister needed a transplant its not exactly something you want to hear. I am not going to lie ever since i have been told i have been very scared and just not been myself but about 6 months ago i got rushed into hospital with very near heart failure and was in hospital for 6 weeks , 17 days in intensive care on C-PAP machine to give pressure into your lungs as well as oxygen but they mentioned a line called the Hickman line to try out as it was my only other medicine to try as I'm on all the other ones to help me and they started me off on that in hospital in the intensive care and wow the headaches and sickness was horrendous but worth it to know to this day this is what is keeping me alive and stable right now , this doesn't mean that i wont need a transplant because i will at some point but not as quick as everyone thought.. I have very mixed emotions about this it may sound selfish but i dont want this condition any longer just like nobody else does but i am grateful to be here living each day as it comes , i Am  currently sleeping downstairs as i am not strong enough to get up the stairs just yet but i am in the process of a stair lift being fitted , i am so passionate about getting more awareness about organ donation because one day that could be me and i could be getting that phonecall and to be told that there is a match it would be the best thing i could ever hear , i am always hoping that there will be a cure ❤❤❤

Proud donor ❤
Me and liney my bestfriend ❤
When i was poorly in intensive care❤
When i got admitted to queens medical centre when i was first poorly
When i tried sitting up after being in bed for 3 weeks

Thursday, 6 August 2015

Introduction to My life with PH

Hello everyone my name is parris i am 17 years old and i am from Nottingham in england if you have heard of robin hood then you should know where nottingham is or even  forest anyway enough about robin hood and forest the football team. 

So many people have been telling me to express how im feeling on a blog because it doesn't only help me it can help other people and help them express their feelings and maybe in some way get some comfort knowing they are not alone on this journey. 

November 22nd 2011 was the date i got diagnosed i was 14 at this point. I remember it all like it was yesterday. I had a cough for about a week and i thought oh its nothing and then all through that week i just kept getting worse so i thought i best go to the doctors so my mum rang them and got me an emergancy appointment that day as the doctors know me as i have loads of other health problems but i will save that for another blog as i would be here for days haha. Anyway where was i? Oh yes my mum rang the doctors and they told us to come in at 3pm that day at this point it was about 1pm and my dad was working away but i lived with my mum but she doesnt drive and my brother was away with my niece who was 7 months old at the time so we had no choice but to ring my nana and grandad up and they came to pick us up at about 2 ish to make sure we got there for 3pm. I sat in the back of the car coughing and i remember my nana saying to me " wow what a cough that is " we then arrived at the doctors just before 3 and my grandad and nana decided to stay in the car because i wouldnt be long. We went straight over to the machine where you log yourself in and then i sat down and after what felt like forever because of how much i was coughing they finally said " parris kelvey " which then my heart started racing which my heart has always done that when ive gone to the doctors because of all the health problems ive got. We walked into the doctors room and he said hello to us all and said " so parris how can i help you " and i said " well ive got this cough and ive had it for a while now and ive tried all the medication for a cough and it doesnt seem to be going and its making me feel very tired and i haven't slept properly since ive had it " so he said " ok parris let me check you over can you please go over to the bed so i can feel your tummy " so i got onto the bed and he examined my tummy and pressed on it and said " tell me if it hurts " so i burst out laughing and said " no your tickling me " and then he said " well your tummy is fine you can go sit down now " so i got off the bed and he checked my temperature it was fine which was strange because i kept feeling very hot and then he checked my oxygen and i looked down at the oxygen metre and it said oxygen as 73 and heart rate as 120 And he looked quite concerned and i said " is everything ok " my heart started racing he said " parris have you been out of breathe " and i said " not really i mean ive not been very active because i had a leg operation in june " and he said " let me just go and talk to another doctor i will be back in a minute and thats when i started panicking and i burst out crying to my mum and she said " dont cry it will be ok " he came back in after about 10 minutes and said " i think we need to get you into hospital to get you checked over your oxygen is very low i am suprised you can talk never mind walk " so then i burst out crying and said " i dont want to go " he then said " im going to have to phone an ambulance to take you in " my mum then went to tell my nana and grandad while i waited in the room and then she came back and i heard the ambulance and they came in and spoke to the doctor and told me to sit on this chair while we went outside and they put a blanket on me so i didnt get cold. After 5 minutes we then walked through the doctors where loads of people was sitting waiting to see the doctor and was staring at me.. I then got into the ambulance and they put a nose cannula in my nose to give me oxygen which it was at 2 litres which felt so cold and i kept asking to take it off because it was so cold hahaha. After about 30 minutes we arrived at QMC hospital and they took me to A&E where my nana and grandad was waiting for me , we was there for hours waiting to be seen and then after a couple of hours the doctor came to ask me loads of questions like they do and i described how i felt and at first they said i had a asthma attack which ive never had asthma. Then they said it was pneumonia which explained why i couldnt stop coughing and felt stuff on my chest. They said i would probably only be in a night or 2. My mum couldnt stay the night as we have 2 dogs so she stayed till the latest she could and then went home at this point i was so scared not knowing what was going to happen and then i woke up wondering where i was and the doctors came to examine me agajn and i had a heart scan whjch picked up a hole in my heart and after test after test they told me i had a hole in the heart and something called pulmonary hypertention which is high blood pressure in the heart and lungs and was caused by the hole in the heart i ended up in hospital for 6 weeks!!!! Then i came out just after new year i spent christmas day in there its not as bad as you think , hospitals make it feel as close to home as they can do i was allowed out for a couple of hours , in june 2014 i had my hole closed in birmingham childrens hospital i had a catheter put into my groin which had a thing ( dont know what it was called it looked like a cobweb ) and that closed the hole.. I was then on oxygen for 2 years 

Anyway everyone thank you for reading :) hope this has helped in some sort of way this is only an introduction ❤

 Me with my oxygen on in 2011

Thursday, 2 July 2015

Living with PH

So hello everyone as you all know living with PH it is very scary and you don't really know what is going to happen each day you just have to take it day by day , it's a scary process but you learn to deal with it all after a while. There's times where you just want to scream but then if you scream you will probably end up out of breathe which isn't so fun trust me haha , you want to brave for everybody because you don't want to feel like your letting your loved ones down , just lately i have been in fear each and every day on whats going to happen to me i hate it , i have these thoughts in my head that im boring everyone around me when they are always telling me im not. I never believe people i dont know why i really dont amd i think thats what is the most annoying thing about it all. I want to be able to go out by myself even just for a walk. But i cant im in a wheelchair due to my PH and my other health problems and i have to rely on other people to take me out. All my mates are always telling me about what plans they have and in some way i get jealous wishing i could do all them things. The most important thing about having PH is that you never let it control your life because thats when people start thinking there is nothing else to fight for when actually there is , we want to beat PH and not let this disease take us away infact no we NEED to beat PH. We are not alone in this world we have plenty of people to talk to. I am going to speak to a counsellor soon about everything and try and build my confidence back up because about 4 months ago in about febuary time i got rushed into hospital with very near heart failure and my life was in the balance i was in hospital altogether for 6 weeks and spent 17 days in intensive care on the C PAP machine which gives you pressure into your lungs aswell as putting oxygen into your body. Ever since ive been out ive not been myself i personally think its because i never actually got time to cry or anything because it was all going like a rollercoaster and now its still part of recovery as i am sleeping downstairs because im not able to get into my room. I managed to get up 2 times in 4 months but then payed for it the next day. I want to be my random self again i used to be able to know what to say all the time and just lately i dont know what to say. 

This blog may not make much sense as i have just wrote stuff down on what im thinking but all i want you all to know is keep fighting and we will kick PH's ass together ❤❤❤