Skip to main content

False alarm for transplant

2 months and 11 days after being placed on the active waiting list for a double lung transplant, yesterday, Thursday 20th November 2014 at 10.15am I received my first call for transplant. I was in bed fast asleep when my phone rang, I woke up to see it was an unknown number but I wasn't phased due to the fact bupa who deliver my IV antibiotics had rang me at 9am also on an unknown number to tell me my delivery was going to be later than predicted so when I received this second call from an unknown number I just presumed it was bupa again to tell me they were almost at my house with my IVs. How wrong I was! As soon as I answered and heard the Geordie accent of the transplant coordinator I knew it was Newcastle hospital. As I realised it was Newcastle I still didn't think it was my call as the questions she was asking me seemed like it was just a check up phone call to see how I was doing. After I'd answered all her questions she then said 'right well, I think we have a pair of lungs for you so we're going to get you up to the hospital straight away, I'm just going to arrange an ambulance and it'll be with you asap' I think my reaction was 'oh my god!' At this point my mum came running to my room and I told her it was my call! The coordinator told me to stay calm and get ready as quick as I could and that she'd see me as soon as possible before she hung up! I was shaking in shock and my mum had welled up with tears! We both were stood facing each other on the landing in our Pyjamas and we did this awkward shuffle and both said a profanity before going off in opposite directions to get ready! My brother ran out of his room in his pyjamas hair all dishevelled asking if that was my call, I replied yes and he straight away started to take all our bags downstairs, helped me get ready and calmed me down, he was a super hero! We had to call my dads office at work as he'd forgot his mobile phone for the first time ever!! Typical!

My dad arrived home 20seconds before the ambulance arrived at 10.35am, just 20 minutes after my call! I gave my brother and dad a big hug before getting into the ambulance with my mum! I got to sit on the bed for the journey so travelled backwards! The journey went surprisingly fast, we chatted lots to the paramedic and obviously as soon as a car was in our way the blue lights and sirens went on! It was very exciting! 

 
Me in the ambulance with my cuddly polar bear George who is with me at EVERY hospital visit! 

When we got close to Newcastle we opened the blind on the window and got to see the angel of the North and then the fantastic view of the sage and Tyne river as we went over the Tyne bridge! It was all really surreal even then, I couldn't believe we were actually almost at the hospital! Me and mum kept saying to each other it didn't seem real! 

We arrived at the hospital at 1.45pm. I was taken to the institute of transplant at the Freemans hospital which is so incredible and swanky! It's a brand new state of the art centre especially for transplants! Once we got to the ward I was given a side room which was huge! All the staff were expecting me and said 'Hello Holly' in their Geordie accents! I loved it! Straight away my nurse Lois began all the pre op tests I needed. Even though we still didn't know if the lungs were okay, they have to start the tests so as soon as you do find out your ready to go to theatre straight away! I first had my obs done, blood pressure, temperature, sats. Then I had an ECG, which was slightly high but they said it was probably down to nerves! Duh! I then had to do MRSA swabs. About this time my dad arrived at the hospital at 2.45pm! I was so relieved and happy he had arrived in plenty of time to see me before the op! At 3.15pm I had just finished answering all the nurses questions and been weighed when the transplant coordinator came in my room in scrubs. Straight away she said 'I'm really sorry, I have bad news, the lungs aren't good enough' obviously I was really disappointed, she told us that when they'd called me the lungs had really good gases but they'd only then just found out something bad about the donor and the surgeon said there was absolutely NO WAY, he was going to use the lungs for transplant. I don't know what was wrong with the donor they aren't allowed to tell you but it must have been bad! Anyway my coordinator decided she wanted to do some bloods so they had some up to date ones for tissue typing and then she said I could go home! We were going to visit some of my Geordie family before heading back but in the end we were that exhausted and emotionally drained we just wanted to get straight home and to bed! 

On the way home we stopped at Wetherby services for some dinner, I had a yummy Greggs pasty and 

here I am with a HUGE gingerbread latte! I look a bit worse for wear as I'd been asleep in the car! 

Once we'd eaten we got back on the road and I cosied up again 

we got home at 10.15pm exactly 12 hours after my manic day has began! 

I woke up today and yesterday just feels like a dream, I can't believe it really happened! Yesterday just wasn't supposed to be my day though, everything happens for a reason! I just hope my next call the lungs are good enough and it's the real deal! At least I've now had a practice run! Thanks for everyone's messages of support they are amazing! 

H x


Comments

  1. Rakesh28 November 2014 at 07:05

    Dear Holly,

    I was directed to your blog by a mutual friend and I am so happy that I was steered in your direction. I read with pride the experience you had recently driving up to Newcastle in anticipation of a potential double lung transplant. I feel a sense of happiness that someone like you can go through an experience like that with such differing emotions in a short space of time, without it affecting your spirit. I cannot imagine what it must be like to elated one minute, but disappointed the next and then to pick yourself up the next day as if nothing ever happened.

    I think the experience will stand you in good stead and strengthen your determination going forward. You now know that there is hope and that another call will come again one day. You will get that call and next time, things will hopefully follow through. Your experience can be shared with anyone who faces the tribulations of life but cannot find the sense of determination and resilience to get through. You truly have a story to tell about what it feels like to look at a phone, not for a message but ‘the call’ and we can all learn from this post and others you have written in the past. We take for granted what we have but you for one, don’t do.

    I am happy that your experience at the hospital was one that you can look back at without fear or anger, since you will be going back to Newcastle in the not too distant future. I hope that my lungs go to someone like you if I don’t need them anymore, since you deserve the gift of life for what you manage with and battle through everyday.

    Best wishes,

    R

    ReplyDelete

Post a Comment

Popular posts from this blog

Sleeping beauty, or not!

After being re-ventilated on the Saturday morning 28th February, the doctors had a meeting with my parents explaining the seriousness of my situation and even suggested to them to call my brother who was working on a ski season in Austria and tell him to get the first flight to newcastle because of the high chance I wasn't going to survive. They were told my lungs were completely infected with pseudomonas along with a secondary infection of pneumonia and on top of that I had septicaemia. My X-ray showed my lungs were a total white out, my feet and hands were purple and frozen to the touch, my mum said I was like a corpse. Along with my struggling lungs my heart was at full stretch, I had now had a dangerously hight heart rate of over 170bpm for over 24hours. My mum, dad and sister took it in turns to be by my bedside constantly, holding my hand and talking to me, willing me to get better. Fully sedated. Mum holding my hand and talking to me while I'm sedated. By Sunday...
5 comments
Read more

The start of the roller coaster...

On the 19th February I was taken to the brand new transplant ward in the state of the art centre of transplantation, I was given my own room and en suite that could easily pass as an apartment it's that big! I still had 4 chest drains in and had an epidural to control my pain so I wasn't able to move from my bed except for the comode (toilet on wheels) due to all the wires and tubes! 4 chest drains, a central neck line and the dressing on my scar My epidural in my back for pain control I had daily physiotherapy sessions in which the aim was to restore my balance and regain muscle. I started off with marching on the spot, raising my knees nice and high and punching the hands of my physio or doing very gentle arm weights! Punching my physio with gusto! Despite working hard at my physio I was finding it hard to cough up the gunk from the operation and so it was decided to do a bronchoscopy to do a lafarge in which they flush out the lungs with saline and suck back an...
6 comments
Read more

A miracle review

It felt so strange walking into the house, you know how everyones house has a smell but you can never smell your own because you live in it, well because we'd been away so long I could smell my houses smell! I guess it was a combination of the pine wood doors, washing powder and reed diffusers dotted around the place, whatever is is though it smelt good! We wandered around the house  like we were viewing it for the very first time! Despite neighbours and friends going in it everyday to look after it, it still echoed and felt un lived in. There was a HUGE pile of post, even more wonderful 'get well' cards and even some gifts! The bills and other boring letters not so well received!  Thumbs up I'm home! All the post! Exhausted from the day I crashed on the sofa whilst mum prepared dinner and dad sorted out the spare room for me to sleep in. I couldn't go back into my bedroom until it had been deep cleaned due to the risk of my CF bugs being in there. I ha...
4 comments
Read more