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Friday, 11 September 2015

Life on The Transplant List; In Memory of Andrew Ward.


Whilst we can sit and raise awareness of Organ Donation one of the vital things I wished to be included this week was what was life like for those currently on the waiting list for a transplant? I think it's important that we don't ignore these individuals, these are the people living their life on a tight rope and who are living through the hell of waiting for a transplant. I asked my friend Andrew Ward who I got to know through the death of Emma Kingston to write something as he recently was placed on the waiting list, the result is both beautiful and hard-hitting. I would love if you could spare your time to sit and read his story right until the end, it's a long one but definitely worth a read.

So why is National Transplant Week so important to me? Well, I was born with the genetic disease Cystic Fibrosis. It’s the UK’s most common genetic disease and it primarily affects the lungs, clogging them up with awful, thick, sticky mucus that leaves them open to recurrent infections. These infections slowly cause irreparable damage to your lungs, making it incredibly difficult to breathe and function as a normal human being. There is no cure for Cystic Fibrosis. The current life expectancy of someone born with the disease in the UK is 40 years old. The only hope that you have is to reach transplant stage and hope that you’re lucky enough to receive one. If you don’t, then you die and many of us so often do.
I’m currently four weeks short of my 37th birthday and I’m incredibly lucky to have reached this age as I’ve lost countless friends to the disease in their teens, early 20s, mid 20s, early 30s and so on. I must have lost hundreds of close friends over the years. CF really doesn’t discriminate in who it chooses to take from you. It is the cruellest of diseases and unrelenting in its evil. I’ve watched it destroy lives over and over again my entire life.
One of the many problems with CF is that it affects everyone differently so no two people really have the disease the same way. This is due to the different gene types which are the root cause of Cystic Fibrosis. The faulty gene in your body means that you don’t process salt and water properly in the cells within your lungs. As a result you’re constantly being drowned alive by the horrible thick sputum that I mentioned earlier. This also means constant admissions to hospital to treat the recurring infections, being pumped full of horrible antibiotics with awful side effects, draining daily physiotherapy to clear your lungs and weeks and months of your life robbed away from you over and over again. Nothing about your life is ever normal when you have Cystic Fibrosis. It’s the disease that loves to take from you on every level.
Saying all of that though, I’ve been fairly lucky compared to many. I’ve managed to have a decent life despite all of this, had a relatively normal upbringing despite missing school a fair bit when I was younger due to hospital admissions and I left high school to work as a bartender when I was 17. I still had lots of medication to take and flare ups which used to make me really ill but back then I was winning the fight. I had the control over my disease and so I tried my best to live as normal a life as possible, and for a while I did. I enjoyed it as much as I could but I always knew that one day I would start to get sicker. And I did.
CF started to affect my life towards the end of my 20s and the beginning of my 30s, my lung function was around 35% which isn’t much but I still managed to maintain a good quality of life, in part due to exercising as much as I possibly could which meant that although I still got ill, I could fight back against the infections because my lungs were still strong despite them gradually getting worse. I had previously had to effectively retire from work in my mid 20s as it was beginning to impact upon my health. I was devastated as I was looking forward to progressing in my career and had hoped to one day own and run my own bar in Leeds. However, that dream was swiftly crushed.
So, what did I do in the meantime? Did I sit on my backside feeling sorry for myself? Nope. I dusted myself off and looked at what I could do with my life despite my failing health and being at somewhat of a crossroads. I decide to go back into education as I hadn’t had the best time at high school plus it was one of the few things that I found where I could still manage my increasing treatment regime and bouts of ill health. In 2007 I signed up to do a mature student access course and it changed my life. I did really well and progressed to the access to higher education course, aced that and then started university in summer 2009 to study a degree in Media and Cultural Studies at Leeds Metropolitan University. I’d never have gone to university if my health hadn’t declined so I guess it was something good to come out of a bad situation and I graduated in 2012 with a first class honours along with scooping a trio of awards too. It was one of the proudest moments of my entire life as towards the end of my degree my health was giving me a real hard time. I wrote my dissertation from my hospital bed in 10 days and at one point thought that CF had again robbed me of something that I cherished. Thankfully, it hadn't and I had scored an important victory.
However, this victory was to be short lived.
Because I’d done so well at undergraduate level I decide to see just how far I could go with my education and I was accepted onto a Master’s degree at the prestigious University of Leeds. I was so excited as I had begun to plan a future career as a lecturer which is something that I never thought possible before. I was fighting back and winning, rebuilding and reshaping my life into something better despite things getting harder and harder. I always figured that one day I would need a transplant so I’d best make sure that I had qualifications that were as good as possible so that I could finally return to work and earn a decent wage once I had been through the operation and rehab which I thought was still a few years away. So, I started my Master’s degree in summer 2012 and hit the ground running, it was great and I really felt like I had found my calling, I enjoyed the work and found that I could offer something different to my colleagues due to my unique life experiences and perspective.

At the beginning of 2013 we experienced one of the coldest winters in 50 years in Yorkshire and as a result my health took a real kicking. I was in and out of hospital for the first 5 months of the year. In for three weeks, home for two, and then back in for a month. Serious infections and rapid lung function loss meant that things had gotten serious pretty quickly for me. The brakes were put on my life instantly. I was advised to take a year off of my Master’s to give me time to recover which I was gutted about as I had been doing so well. To further twist the knife in I was several months into a new relationship and had finally found true love with my best friend. It was truly awful as we were so happy and looking forward to spending the rest of our lives together but we dreaded that this was the moment that it would all be torn away from us right before we had even gotten started. Again, CF was choosing to rear its ugly head when I had finally become happy and settled in life. My consultant advised that I should be assessed at Newcastle Freeman Hospital for viability to go on the lung transplant waiting list. Initially I was resistant as I was angry that this was finally happening to me but I really respected him and had known him most of my adult life so I agreed. I knew that this point was going to eventually come so there was no point in fighting it.
Thankfully in the months following my extended period of ill health I somewhat stabilised, this was partly due to starting a nebulised antibiotic which was kept specifically for end stage patients called Azli. Combined with that and lots of hard work, swimming and exercise I managed to claw some of my heath back and enjoyed a good summer with my partner. We had a fantastic family holiday in Devon and spent some much needed precious time together without CF causing us problems and I went on a bit of a run of good fortune. I stayed well and didn’t need any in-patient treatment for 8 months which is practically unheard of when you get to end stage. I was still managing to fight back. At the assessment I blew good lung function blows of 37% and I was then deemed too well to need to be on the transplant waiting list. You see, this is one of the many things that people don’t understand. In order to need a transplant you have to clinically be at end stage of Cystic Fibrosis. This basically means that your doctors predict that you will only have several years left to live if you do not receive a life-saving double lung transplant. I think the general statistics are that you have somewhere between 3-5 years left which obviously, at any age is crushing to hear. You also have to be well enough to undergo the operation so you’re essentially stuck in limbo, critically ill enough to need a lifesaving operation but stable enough to undergo said operation. It’s a weird place to be, both physically and mentally.

As I was deemed too well at my initial transplant assessment we were given another appointment a year later which, despite the odd admission or two in the meantime I again was assessed to be well enough to continue as I was and got on with my life. 
As we began 2015 my health was taking another knock, I was ill from November 2014, came home for Christmas, caught a cold after a week at home, needed an extra week of IV drugs at home and then got ill again in January with Rhinovirus (the common cold virus which mutates and attacks CF lungs aggressively). I was so weak after January’s infection that it took me the best part of three months to get better. It was awful. I was so weak that I couldn’t even swim to get my physical strength up and just floated around for a bit. It was at this point that myself and my partner started to seriously consider that my time was up and that we needed to get on the active transplant list. My infections were becoming more frequent and severe; CF was finally winning and taking over my life and the life of my loved ones. To top it all off, after three months of exhausting physical rehab I was just starting to recover and then tested positive for the MRSA bug. I started aggressive decolonisation treatment instantly but then had a horrific reaction to the nebulised drug used to treat MRSA called Vancomycin. My chest spasmed so much that I couldn’t breathe, I was gasping and could barely speak as my oxygen saturation levels nosedived to critically dangerous levels leaving me exhausted and bed bound. The treatment was only for five days and I needed to see it through to give myself the best chance of getting rid of the bug in my lungs so I saw it out although it really felt like my time was up and I was staring into oblivion. The first morning after the last dose of the Vancomycin I was rushed into hospital for an emergency check-up. The drug had caused my airways to narrow so much that my lung function was at only 14% and my CF team took one look at me and admitted me there and then. I was in a mess and ended up staying in for 27 days.
It was more than obvious that I no longer had much reserve left in me to fight serious infections so my partner and I discussed our situation and decided that it was for the best to get on the active transplant list so we called Newcastle and luckily they had a cancellation a few weeks away that we snapped up. After I was discharged we continued the cycle of rehabilitation but it was incredibly hard, my partner has M.E. related chronic fatigue syndrome and was seriously ill herself so we found it nigh on impossible to cope despite wanting to look after and care for each other. We had very little help as I think people just assume that you’re ok because we weren’t sat on social media complaining about how hard our lives were and decided that we needed to get home care in place to support us both and allow our boys to have as normal lives as possible.

The assessment came in June and we expected to go on the list after the last couple of months. All of my results were slightly worse and I was honest and said to the transplant team that I felt that now was the right time to go on the list and they agreed. I didn’t really feel much when they told me their decision as I had prepared myself for it. The transplant team said that because my blood type is B+ and that because I also have an antibody which precludes 40% of my donor pool then I could be in for a wait on the transplant list. They can’t give you an estimate of how long it may take. I’ve known people be on the list for weeks and receive a call, and I’ve also known people be on the list for a couple of years and then get one. I’ve also known lots of people die before even getting to this stage, or whilst waiting on the list which has recently been underlined again after I lost one of my oldest friends of over 20 years to CF. She was on the waiting list for some new lungs and had been on it for 20 months. She sadly very recently died weeks after her 35th birthday and didn’t receive even one false alarm call. My eyes are fully opened to the situation that I now find myself in as I have been told that this was coming my entire life. After a few signatures for the surgery and a chat with the surgeon and anaesthetist about what will actually happen during the procedure we were sent on our way home to digest this new chapter of our lives.


A couple of weeks later I received the phone call from the transplant co-ordinator that I was now active on the list. I began shaking and my heart felt like it was going to jump out of my chest when I heard the words, ‘’you’re now active on the transplant list’’ and tears welled up in my eyes. I felt crushed. It’s not a phone call that you ever want to hear despite knowing that it is going to happen one day, and despite being positive about the transplant experience. I felt like a timer had just been pressed and was counting down on my life. How much time did I have left now? Will I get a transplant? Will I die waiting for one? How will this all affect my partner and our boys and our loved ones? Can I do this? There were so many questions in my head and I felt so very weighed down by it all. I couldn’t sleep at night and felt myself thinking about my new status quo all of the time. Nothing ever prepares you for this. Nothing. My thoughts jumped from super serious questions about life and death, leaving my partner and family behind to the ridiculously stupid such as, ‘’what will I do if I get a call when I’m watching the new Star Wars film?’’ and so on. I think I had a mini mental meltdown and felt really anxious along with lots of rage and anger. I thought that getting the call to tell me that I was active would have the opposite effect on me and feel like a relief but it didn’t. I was upset and hurt and felt like I was in a daze trying to process the multitude of thoughts and feelings that it released. People were pissing me off congratulating me on being on the transplant list. It’s just not fair being in this position just by the nature of being born differently.

I guess I felt somewhat cheated after doing everything that I possibly could to keep as well as I could my entire life. I really had trouble adjusting to things and there weren’t really many people that I could talk to as not many people knew how I was feeling. Even other people who had been through the transplant experience weren’t as honest as me, or hadn’t seen the things that I had being an older person with CF so they couldn’t relate. And, I didn’t want to fill my partner’s head with all of my darkest thoughts as one of the hardest things to live with is how this disease and your situation affects those you care about. Your natural instinct is to protect them as much as you can and despite me and my partner having an incredible relationship where we could talk about anything, even the darkest things I just felt like I wanted to protect her and close myself off. However, I soon realised that this wasn’t healthy for me and for us as a unit so I sought some psychotherapy from my CF psychologist and started some anti-depressants to help bring my anxiety under control. Thankfully both have helped me and I’ve made progress in coping with the initial shock and trauma of now officially being at end stage and potentially facing the end of your life although things are still incredibly hard, both mentally and physically.

When you get to end stage you’re walking a tight rope between life and death; there’s no other way to put it and everything has a potentially fatal risk involved to it. Newcastle advise you to focus on enjoying your life and living as normal a one as is possible which is easy to say in theory. Every aspect of your life is now affected and there’s really very little that you can do about it. It would only take one serious infection to kill me now so everything in life has to be planned to military precision and risk assessed which often leaves you isolated from the outside world. I can no longer just go out when I please and do many of the normal things that people take for granted. Being near someone with a cold or sniffle, cough or chest infection could put me in hospital for weeks on end with months of rehab afterwards. It’s scary. REALLY scary. You can be as positive as you like about it all and we are but you can’t lie about where you are with this so I really don’t want anyone to think that I’m being negative about my situation or transplant if they’re reading this. I just wanted to be very, very honest about my story as a lot of people are in the same, or similar positions as me and they are often overlooked or ignored for more ‘media friendly’ stories and people shall we say.
So, life is very difficult now although we’re trying hard as a family to retain as much normality as possible and stay positive for the good of us all. Summer months are slightly easier to manage but, for example this past month I caught a summer virus and deteriorated overnight to the point that I was struggling to shower myself and walk short distances without being incredibly breathless which caused my heart rate to shoot through the roof so at times it feels more and more like you just can’t win anymore. Cystic Fibrosis is an incredibly isolating condition as it is but when you get to transplant stage it is even more so. People don’t really understand the line between life and death that you are treading and just how careful you HAVE to be. You find yourself not being able to go to social events much anymore, or it’s even hard to invite people round to your house because as I said previously, all it would take is one cold or bug to end me. People disappear from your life, or react in difficult or selfish ways so you have no choice but to cut them out. Some people don’t mean to be that way, some don’t know how to react to things and some just assume that because you’re active on social media that you’re alright when the reality is far from the truth. It’s a horrible, horrible position to be in but you have to do it as you are doing it in the hope that you can survive long enough to get a transplant which could be years away. You are literally fighting for your life now and can’t afford anything that might risk that or put you under strain.

I want to be free of all of the medications and draining physiotherapy, the constant hospital admissions that make you wish you were dead half of the time anyway. I’m tired of not being able to breathe, of being exhausted all the time, of seeing the pain and worry etched on the faces of my loved ones, of having to cancel things all of the time. I’m tired of Cystic Fibrosis. I want new lungs. I WANT TO BE FREE OF THIS DISEASE.

Hopefully, one day I will be.

This is why National Transplant Week is so important to me and many others in the same situation as me. If more people don’t sign up to the organ donor register then we’re all going to die. People are dying every single day because there is a shortage of donors. It really is that simple. Our loved ones lives will be destroyed forever and this can all be avoided. I know this because I’ve seen first-hand the amazing transformative power of an organ transplant. Lives can be changed for the better, people can be given second chances and families can have many years of happiness and joy together. You can save up to 8 people by being an organ donor and I’m one myself despite most of my organs being useless, I can still donate my corneas to help someone see in the event of my death. There’s no better gift that you can give as a human being surely? Please think long and hard about signing up, and please, please inform your relatives of your wishes to be an organ donor and make sure that they will carry them out as they still have to power to block your wishes unfortunately.
I really hope that we will one day have an opt-out organ donor register in this country likes Wales have recently announced. Until then awareness weeks such as National Transplant Week are vital to help educate people on why this issue is important for all of us. Please help us to do this as people are dying.

I don’t want to be one of them.
 

thanks to Andrew for giving his time during difficult months to write such a beautiful post for National Transplant Week.

[Sadly on 13 November 2016 Andrew lost his battle against Cystic Fibrosis. After 6 false alarms for new lungs, sadly new lungs didn't make it in time. It's sad reading this post knowing how much he wanted to fight this condition, beat the odds and get new lungs. He was a fighter like no other and didn't want people to sympathise with him over having CF, all he wanted was more names on the register. I'm going to miss his upbeat, no shit attitude. Rest in Peace Andrew xxx] 

remember to sign up to be a organ donor you can go online and it'll take you 2 Minutes to complete.

thanks for reading,




3 comments:

  1. I read this post from start to finish and am in awe of the courage and fight Andrew possesses. I have signed up to be an organ donor today and hope I can one day relieve someone of the horrible burden of needing a transplant and waiting indefinitely to get one. I truly truly hope Andrew's burden is relieved very very soon and that he can continue living his great achievements for many years to come. He will be in my thoughts.
    Amy 🌸

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    Replies
    1. It's such a powerful post isn't it? Ah thankyou for signing up, I know people like Andrew will really appreciate the big decision you have made. He had a false alarm this week but hopefully the call will come soon for him!

      Em x

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  2. This is such a hard hitting post and thank you for sharing! I am already on the list but I think this years NTW has been a real success with a lot of people talking about it. I do hope more people will sign up! x

    Jasmin Charlotte

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