Skip to main content

Life on the transplant list

I've been on the list for almost a month now and am finally getting to grips with the implications of that and the reality! Everything has to be well planned out now and making plans into the future is more risky because I just don't know when my phone is going to ring. People it seems aren't very well educated on how organ donation and transplantation works. There is absolutely no way of knowing when I will get my call to say they have a matching pair of lungs so therefore no, I do not know how long I will be waiting for. People seem to forget that the organs come from a donor who has died and as we all know, predicting death is impossible non the more so predicting the death of someone who is a suitable donor for me. Unfortunately, there is not a factory that makes lungs as they are required, everyone seems used to living in a world where everything is accessible and available instantly, alas, lungs are not. There is no point either in asking me for an 'average' waiting time because it means nothing, some people wait a week other people wait 3years and for some the call never comes in time so when I tell you 'I don't know' I really don't know how long I will be on the waiting list for.

As the call can come at anytime I have to be prepared for it as after I receive the call and ambulance will be with me within 10-20 minutes to transport me all the way to Newcastle with its blue lights flashing! Once the lungs have been removed from the donor their is a very strict time limit in which they can be transplanted so I have to get to the hospital as quickly as possible! I am only allowed one person in the ambulance with me due to space and I have decided this will be my mum, therefore me and mum can never be further than 20 minutes apart so that we can be together in time for the ambulance arriving to take us! My dad is then going to have to drive up by himself which is going to be really hard but its just the way it has to be. My nurse has assured me that he should arrive in plenty of time to see me before I go to theatre for the transplant!

I will be in newcastle for 6-12 weeks when I get my transplant, up to the first 6 weeks will be spent in hospital and the 6 weeks after we are provided with a flat to stay in as I will have to go to clinic twice a week initially and have bronchoscopys ( a camera into my lungs to check they are okay) and biopsy (a small sample taken from the lungs to check for rejection) once a week. Obviously it would be far too difficult to travel that distance from leicester 3 times a week which is why they provide the flat!

Anyway, the hardest part so far has been packing a bag with everything I need for up to 12 weeks! I've basically bought new of everything (mainly pyjamas!) and a whole new set of toiletries because in the 10minutes between my call and transport their is no way I will have time to faff around packing all of that!

Here is a photo of all the stuff I've bought and packed in my transplant bag! 

Now my bag is packed, aside from constantly having my phone on loud and with plenty of charge there is nothing more I can do but wait and stay as healthy as possible.

In order to stay as healthy as possible I am on constant IV antibiotics to stop the bateria in my lungs reaching a level that is too high and dangerous to transplant, I am doing my NG feeding every night to maintain my weight at 46kg and hopefully even increase it and I am also going to the gym at the hospital with my physic twice a week to build muscle and stamina as the fitter and stronger you are pre-transplant the quicker recovery with less complications. It's a full time job looking after myself but one that is so important if I want those shiny new lungs!

Despite many peoples assumptions because of my situation at such a young age, I am not feeling down or sorry for myself, I am in fact in very high spirits and feeling more positive than ever. You see I have reached the worst I can health wise and so now the only way is up! People ask how I spend my days now I am not well enough to work, aside from all the above to look after myself, I am very lucky to have lots of fantastic friends to socialise with and a passion for art and textiles that I fuel into making various presents for friends and family and I am looking to set up an etsy shop to maybe sell some bits and bobs. Many may look at my life with pity but I look at it the opposite, I feel lucky to be in my situation and I wouldn't change it, I love my life and the people in it and now I am going to get a transplant I get to spend many more years than I thought of loving life with my loved ones.

Holly
x

Comments

Popular posts from this blog

Transplant and television, 'Gift of life' documentary.

Hello everyone,

I hope you are all looking forward to tuning in tonight to my episode of 'gift of life' at 10pm on channel 5! I excited if not a little apprehensive, I'm going to watch it with my parents!

When I was asked to be part of the 'gift of life' I didn't hesitate to agree. From this blog and my youtube you can see how much I like to document my journey with cystic fibrosis and transplant so being given the chance for my entire journey to be filmed was a dream come true! It was at my second false alarm for my transplant that I was approached by the film crew and asked if I would be involved, they explained that they would like to come to my house to film my life as a pre-transplant person and then if my call was to come with in their window of filming they would like to film my journey. I agreed there and then and numbers were exchanged to set up the first day of filming. It was just a week later that Becky and Louise arrived at my house to film the rea…

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.
By Sunday morning 1st March, things had took a turn for the worst, my heart rate was still ex…

New beginnings...

Hello, it's been a while, 18 months or there about since I last posted to this blog.

I don't have any singular reason for the long break there were numerous reasons. I wanted to reclaim some privacy that I felt I had lost through blogging so openly and regularly about my life, I also got caught up in the busy nature of adult life and I never seemed to get the same opportunities to sit and write a blog, if I blog I want to do it properly, not a half hearted attempt. But none of that matters now  because I'm back, with fresh eyes and new ideas on what I want this blog to be, both for myself and you guys reading.

First of all I would like to reassure the many people that have followed my story for the last 6 years that I am alive and well. I am now 2 years, 1 and a half months post transplant which is a fact that boggles my mind, I still have to regularly pinch myself to check it is true and not a figment of my imagination! I still have to attend hospital appointments to moni…