BreatheEasy - My Journey so far.

65roses-breatheeasy:

This is the story of my life so far to let my friends know what I’ve been through and for those who don’t know me to give them an understanding that even though you can’t see Cystic Fibrosis and the damage it causes that we do struggle nearly every day and have the storm cloud hanging over us that we could be gone any day.

i was diagnosed at birth with Cystic Fibrosis a life threatening genetic disease, a lot of people think that CF only affects the lungs but it doesn’t it affects most organs due to all the medications we have to take daily. I wasn’t very sick as a baby but around pre-school i started needing hospital admissions maybe 2-3 times a year at the Royal Children’s Hospital in Brisbane i was still very young then so i don’t remember much from that time. When i got to grade 4 is when i started to get sicker and was going into hospital about 4 times a year and by grade 6 i was going in 6-7 times a year for a 2 week course of antibiotics and chest physio. My veins and arteries at this time started getting very small and next to impossible to get a iv in so a more permanent option was surgically inserted called a port-a-Cath which sits under the skin and on top of your chest wall and a needle is inserted when needed. So for the next couple of years i was pretty stable. When i got to grade 10 i started to get lot sicker and needing admissions every 8-10 weeks, it affected my schooling a little but i was still able to keep up. I kept deteriorating through the rest of the year and every 8-10 weeks became every 4 weeks making school nearly impossible and started getting frequent lung bleeds which i had to have a procedure to block off arteries that were leaking into my lungs. In early 2010 i became pretty sick and my port decided to stop working which would require an operation to remove the old and a new one inserted, the doctor who was looking after me at that time told my mum and dad that i might not make it through the surgery. But i pulled through but was still pretty sick my lung function tests were around 60% and i lost a lot of weight which is one of the many pains of CF having to take tablets every time you eat, having to eat nearly double a normal person would eat just to have enough energy to bring yourself to wake up in the morning, because my weight was so low i had to start putting a tube down my nose to have over night feeds which is this brown liquid like stuff kind of looks like iced coffee but you really don’t want to drink this shit!.This is When i was introduced to Scott Bell the head of the Cystic Fibrosis unit at The Prince Charles Hospital and David Reid. They stood at the end of my bed with my current doctors and decided that they would take over my care. I was transferred over to PCH the next day where i would stay for 2 weeks on top of the 2 weeks i had spent at the royal, so i had ended up with a 4 week long admission. Scott and David decided that there was some things that my old doctors hadn’t considered before that might of been causing my frequent infections, i ha a PH study done to see if i was getting reflux which involved a tube going down my nose and it had sensors that indicate how far the reflux would come up the results where i was getting sever reflux every 5 minutes throughout the day. So they began treating that hoping that this would solve problems, I was now needing admissions every week for two weeks so i would go to hospital for 2 weeks and home for 7 days, i had an operation called a fundo where they tighten the top of your gut to stop reflux. I started getting really depressed at this point thinking that this is it im going to die soon i wouldn’t be able to sleep at night because i was thinking about all the things i would never get to do. i finally told Scott Bell about this and i was started on anti-depressants and he brought up the possibility of a transplant, the thought of a transplant at the time scared the SHIT! out of me, i had only known one person who had needed a transplant. Scott had asked for Peter Hopkins who is the head of the lung transplant for Queensland (FYI: the prince charles hospital is the only hospital in Queensland that performs Lung Transplants) and world renown for his amazing work in transplant medicine to come and have a chat with me. it was around September about a week before my 18th birthday and we talked about transplant. my lung function at that time was still about 42% and i was on a high dose of prednislone which is a steroid that isn’t very good to be on for extended amounts of time and at this point had been on it for a year and my body relied on it, peter told me that at this point i wasn’t ready for a transplant and he would review me in 6 months time. I kept getting sicker and by November my lung function dropped to 30%, and was no longer scared about transplant i was actually ready and wanted it, so Scott had asked peter to come see me again 4 months earlier then he planned. Peter decided it was time to begin my assessment for transplant which involved a hell of a lot of tests and all up took about 4 weeks. I then attended transplant clinic with my mum and dad and met with Dan Chambers and he gave me the results of my assessment he told us that i would have about a year with my own lungs and i would become seriously ill. He also i was going to be accepted on the transplant list once i had seen the surgeon. i was in hospital and ready to go home on the 24th of December the surgeon Doug Wall came in to my hospital room and had a chat, he told me that we can’t wait any longer if I’m to make it to receive a transplant we have to be listed now!, so that afternoon on Christmas eve i was officially on “the list”. on the 3rd of January at 6:50 am i received a call saying they may have a possible donor for me, And to top it off i was staying at my uncles in Toowoomba at the time! so he had to rush me from Toowoomba to meet my parents at Ipswich and then rush to PCH, in the car i tried to stay calm but in my head it was chaos i didn’t know whether to be happy or sad or if i even wanted it again we were about 20 mins from the hospital when they called up and said they were no good for me and to turn around and go home and it was that second i realised that i really wanted a new lease on life. the false alarm really didn’t help ,my depression at this point and i noticed my personality had changed a lot i was never happy anymore and the brave face i put on was just an act. my hospital pattern continued up until the end of April. i got another call and was told they had a possible match. so we rushed to the hospital where i was admitted and peter Hopkins came in and saw me and said that the cross match was good and the transplant was going to go ahead for me but he said i would have to be put to sleep before the final ok is given because the lungs only have a certain amount of time before they become unusable. i woke up the next morning and realised that there was no breathing tube in so i knew straight away that it hadn’t gone through i was so upset and mad i was done id pretty much given up on myself, i made them discharge me from hospital and for the next 3 weeks i refused to go in even though the anaesthetic had really taken its toll on me i woke up one morning half way through may and could barley breathe i freaked i got mum to call up the CF nurses to get me a bed. i was admitted that day and was immediately put on oxygen. the first 2 nights i was ok but the 3rd night i woke up to go to the toilet and when i got back to my bed i couldn’t breathe, my chest was so tight i just couldn’t get any air in, it settled after about 3 hours but it really scared me, i was so scared that they actually let my mum stay in my room with me over night just in case something happened which is unusual for an adults hospital, i was now relying on a machine called bi-pap which is this darth vader mask like contraption the forces air into your lungs when you take a breathe in, as well as 8 litres of oxygen flowing through it. Scott Bell was coming into my room everyday at this point checking up making sure i was comfortable which we didn’t know at the time was pretty much preparing me for the worst. so i was on ALOT of morphine and i don’t remember much of next few days but i remember one night asking my mum “is this how people with cf die” mum of course had no idea and tried to assure me that it wasn’t but when she asked Scott the next day he had to tell her that this is how people with cf pass away, he also had to tell mum that i would be ok to have a transplant this week but next week would be to late. Scott had been keeping Peter Hopkins updated everyday and either himself or Dan were coming into my room once a day at that point to try and reassure mum that i would get through this i guess, on Thursday the 26th of may Peter Hopkins came into my room and stood at the end of the bed looking at me as i was half unconscious and he said to me and mum he has sent out a nation wide alert for me (with transplant usually you only receive organs from your own state) which was the first time in 3 years PCH has done a nationwide alert and the first time they’ve had to do it for a lung transplant, the only thing is you can only be on it for 48 hours. Peter took mum into the corridor and guaranteed her i would have my transplant within 48 hours. 10 hours after he told her this at 11 pm i was woken by some random lady haha! who told us that there was a match. at this point i didn’t have my hopes up after the last 2 times and Scott came into my room and said were not even gonna talk about a transplant until i wake up with new lungs. at about 7am Friday morning i was wheeled of to surgery and then i was stuck waiting for the final word that it was going to go through at about 8:45 the surgeons received a phone call saying the lungs were perfect and were going to go ahead but! it wasn’t the official call so they couldn’t start yet about 15 minutes later i was wheeled into the operating room and knocked out for what could of been my last day alive. When the surgeons put me on the breathing machine that forces your lungs to work mine were so damaged that machine couldn’t even get them to work. on Saturday morning i think it was may have been Sunday i remember waking up with a breathing tube in my mouth and people all around me about half an hour later mum and dad came in and i was still very out of it and remember hearing mum the most excited ive ever heard her say you got your new lungs!. they took the breathing tube out and later that day i took my first steps with my brand new lungs! it was amazing i was so stoked i couldn’t believe it i was breathing on my own with no machines and just 48 hours ago i couldn’t even get out of bed. My recovery was pretty good at first and pretty fast i was doing 20 minutes non stop on an exercise bike more then i could even imagine doing before and about 2 weeks after i was sent home! which was short lived! i was home about 2 days when i got a call saying i had caught something whilst being in hospital and i would have to come in and be treated for 10 days! i was then sent home again and wasn’t even home 24 hours and had to go back for another 2 weeks! when i got released that time i was home over the weekend and became very dehydrated and my bowel had blocked up! so i spent another week in hospital! They also found that where they join the lungs to the airway had failed to heal properly causing what they call an astomosis which is like puss scabbing and covering the airway. So I’m currently on treatments to help with the healing at the moment.

that’s about it so far for my story i would like to thank a few people who have helped me through everything and who have always been there for me, my mum and dad and brothers, my uncle and aunty, Sonya (rip),Scott Bell, The whole cf team especially Vanessa and Kate who spent nearly all day in my room looking after me the week before my transplant, Peter Hopkins and everyone on the Transplant team, David Bissel for coming and talking to me the day before my transplant(don’t remember what we talked about though haha), Robbie,Corey,carly j, Kate rootsey

that’s about it thanks for reading hope it’s not to boring haha!

You are such a strong person Brandon. This is such an inspiring story, and I am so glad you are still here to tell it. I am hoping and praying for the best in the future and I just know you will be here to see it.