Monday 25 May 2015

The stranger

You don't know me, and I don't know you, we may have passed in the street, we probably never have, but a selfless decision you've made will ultimately save my life, the life of someone you've never met and never will meet. Someone who may have completely opposing opinions and views on life as you, but you've decided that doesn't matter because your selfless and you want to save lives when yours comes to an unfortunate end. I cannot begin to think of the pain your family will go through when you pass away, but you don't want mine to go through it either so you've offered to help. The thing I can't help thinking is that while I'm writing this your currently doing whatever you do in life, it's 11pm at night, there stands a good chance your in bed sleeping so you can get up tomorrow and go to work to fund the lifestyle you live, pay the rent or mortgage on the house you live in with your partner maybe, and possibly even your children. I wouldn't wish for anyone's life to be cut short, let alone it be cut short for me to live, but I've been told that isn't how it works. Unfortunately you passed away because it was your time to go, but you said that someone deserves the chance to live on with your lungs and I am that lucky person. When that call comes for me, your family will also receive a call or awful news. From your death will come my rebirth, it will be the chance I am waiting for to live my life with my girlfriend. And I will be eternally grateful for you for making thay choice to give me that chance! I don't know you, and I never will, but I'd like to say thank you, a great big massive thank you for the chance you've given me to live my life. Stranger I will never meet, thank you x

The day of listing

Thursday 21st May

I've not been listed yet because heartlands hospital haven't released my eye test screening to Papworth so I asked Nottingham nicely on Tuesday to book me in here while I'm on IVs again so they can fax the results over to Papworth and I can finally be put onto the active list.

About 10.30am Dr Clayton comes into my room on ward round and is asking how things are and if I've heard from Papworth when my phone rings, so I excuse myself as it's a private number and thank god it was Papworth.

The wonderful lady on the other end of the phone says those magical words to me and a huge weight is lifted off my shoulders, she says 'Callum, I've some great news, you will be on the active list by 12.00' so I confirmed she meant an hour and a half later and she did and with that I was listed.

The ward round were over the moon and all congratulated me, as they left the room I instantly called Emily to let her know I was on, then I called my mom and dad and nan just so everyone knew, then I announced my news onto Facebook.

I'm over the moon to be listed but it's now a waiting game until I get the call, I've got everything crossed it's not a long wait because from meeting Dr Thomas to being listed has been less than a month. I'm hoping that's an omen that my listing time will be short.

The final meet before listing

Wednesday 13th May

Today was a very early wake up call because I'm in Notts on IVs!  So 6am I'm awake and out the bed, I'm washed and dressed and on the road to Birmingham to get mom by 6.15am! The drive home was very uneventful except for the traffic jams all the way home! So my 1 hour drive on a normal trip turned into almost 2 hours which didn't please me.

I pick mom up and we are on the way to Papworth. Pretty chatty drive to begin with then mom gets the Patient Advice Transplant info booklet out I was given the week before and begins to refresh her mind on everything but she manages to fall asleep in record time and the majority of the drive I am chatting to myself in my head about what the different outcomes of the day could be.

Mom wakes up as we get a lot closer to Papworth and says to me 'playing devils advocate, if they tell you today your ineligible for a transplant are you still going to do all your treatment and look after yourself' and without a single thought I reply with an answer that I think shocked her, I said 'No mom, what would the point in that be?' And that was that conversation over very quickly and a very nervous looking mom sat next to me.

We arrive at Papworth and mom drops me off so I go in and check in, the waiting room is packed, there is one or two separate seats and other than that there's standing room only!!

As usual I require a blood test so I put my backpack on the seat I sat in to reserve it and I make my way to the vampires to be bled! It's only 8 bottles they need today so it's not to bad. Once I'd been bled I went back out into the waiting room and awaited my call to go through and meet the surgeon.

Considering clinic is so full my wait to see the surgeon is Pretty short and im called round by Tracey to meet him, we walk in and shake hands and I sit down and he begins to talk and tell me he sees no reason why he won't be able to do the operation, he tells me my lungs are hyperinflated which has made my rib cage bigger so I would be able to have larger lungs transplanted if they became available which is great news, as this makes the pool of lungs available to me bigger, and he tells me all about the operation. He explains the risks and goes through the different types of donors with me and asks me if I'd take lungs from any donor or if I'd be picky and fussy, I'm in no position to be picky so I sign the paperwork to say I'll take any lungs they see fit to transplant into me!!

The chat with the surgeon is concluded with the signing of all the paperwork and the answer to the biggest question I have had all through the process, can I have a photograph of my lungs when they are taken out of me to which I'm told yes but to remind him on the night, so I'm a happy guy!

I walk back into the waiting area and sit down and the wait begins to be called through to meet the anaesthetist and have my neck ultrasound scanned to make sure there is a good enough artery for my central line during transplant surgery for all the medication post transplant. To my amazement after having 5 ports all that is fine and he is more than happy for me to be listed, so I am taken back out into the waiting room to wait to speak to Paul to have my pre listing chat.

After a short wait and a quick phone call to Emily to tell her the good news that i am able to be listed, Paul calls me through and goes through what will happen now I've been put onto the active list.

He asks if we have any questions and  answers all of them for us. He then tells us what happens on the night you receive  the call. And tells me that if its him that calls me and its out of office hours he usually opens up the call with 'Its a bit late for a social call' to which we have a laugh and a joke. He goes through all the logistics of getting from wherever I am in the mainland of the UK to Papworth, and also what happens if I receive a false alarm.

I was then told the Do's and Don'ts of being on the transplant list, I was expecting a massive list so was pretty shocked when the Do's were, Do live your life. An the Don'ts were, Don't live your life waiting for the call!!

We finish chatting about everything and leave to come home knowing that I would be listed by either Friday or that week or Monday of the following at the latest as there's been a few admin issues recently at Papworth as they are having a new computer system fitted!

So we drive away from Papworth hospital knowing I'll be receiving a phone call soon to say I'm on the active list and I couldn't of been happier! When the surgeon got the paperwork out to sign I felt like a childhood dream of signing a professional contract with a football team was happening or I was signing the contract on the career of my life!

I know that once I'm on that list it's a lottery, it's a waiting game, but unless you have a ticket you can't win the lottery can you! This transplant is going to give me the future I want with Em and hopefully allow us to start our own little family and get a house together and me get a job so I can look after my princess like a real man should!

The assessment days

Tuesday 5th May,

Tuesday morning, my alarm goes off at 6am, followed by a knock on the door and a shout from my dad, but that's to no avail as I still manage to fall back to sleep, only to be woken at 6.30am the time we were supposed to be leaving by my mom going spare!

I jump out of bed, which isn't wise as being on oxygen doesn't allow your body to move quite so quickly so I instantly sit down on the edge of the bed, luckily the night before I had packed my bags for the overnight stay at Papworth so I wasn't in much of a rush I just needed to wash, get dressed and pack my NIV machine.

We finally get onto the road and the traffic is horrendous, most of the way, then when we hit the A16 where we sit in stationary traffic for over half an hour causing us to be late, and I hate being late.

We arrive at Papworth and mom drops me at reception and goes to park the car, I check in with reception and make my way up to Baron ward, where I settle into room 13 and just as mom comes onto the ward we are whisked away to lung function to start the day of assessments on my lungs and heart.

I have 3 different types of lung function tests done then I get a break before having to do a 6 minute walk test in which I managed to walk a meager 140 metres. After that I am wheeled back up to the ward where I get to relax for about 30 minutes before being take for a heart ECHO scan.

This takes around 45 minutes to complete, this is an ultrasound scan on the heart looking at all the different chambers of the heart to make sure it's strong enough to cope with the transplant operation. Once that was finished and I was taken back to the ward again.

As I get back into my room two very nice phlebotomists come in to attempt to take another 10 bottles of blood off me, unlike the lady in transplant clinic they were very unfortunate and stabbed me several times and got nothing out of me.

After giving a urine sample and two sputum samples that was my day of tests complete so me and mom relaxed for a few hours and even got to sample the delights of the mallard ducks that come and graced us with their presence outside the window of the room for a while before we got ready and went to weatherspoons for a meal.

Wednesday 6th May

Another early start to the day with a wake up call from the nurse at 8.30am as I was booked in for my lung CT scan at 9.30am so she wanted me to have plenty of time to wake up and get dressed.

I went to the toilet and came back to the room and the porters were outside my room at 8.45am ready to take me to CT so I rung my mom and told her to meet me at transplant clinic as straight after the CT scan I was being taken there to meet Sadie the nurse, Paul another of the Transplant Co ordinators and Dr Jas Palmer the other of the two Transplant consultants.

After breaking the CT scanner while I was having my scan I was wheeled round to Transplant clinic where I was met by the goose and we sat and chatted for a while, I was then called in to speak to Sadie and she gave us a lot of facts and statistics about the transplant and the operation.  a lot of our questions were answered by Sadie as they came up through out our chat so we didn't feel like anything was left be be asked at that point.

I was then stabbed a few times to get the bloods the guys failed to get the day before! Then it was my turn to go into speak to Paul which was very brief as Dr Palmer came in and we commenced with our consultation. He was a little worried about my compliance issues I'd had previously but he was convinced I'd turned the corner and said I was an ideal candidate for new lungs and said I would need to come back next week to meet the surgeon and anaesthetist to make sure they were happy then they would discuss listing me!

I was over the moon and could finally allow myself to see a glimmer of light at the end of the tunnel but I knew it was still only a tiny glimmer and it was very very far away!

The day of the first meeting

Monday 27th April,

The day has arrived and I can't sleep because I know I don't want to be late as I've got to make the best impression I can.

The drives goes in a heartbeat and it gradually becomes more and more real with each mile! I have hundreds of questions flying round in my mind but also none at all its the most surreal feeling ever.

I finally pull up at Papworth and we struggle to firstly park, then there's even more of a struggle finding the transplant centre.

Me and mom walk in and check in at the desk, and literally as my bum hits the chair I'm called in to have a blood test, simple enough I think, I sit down in the blood test room and to my amazement there is no fewer than 12 bottles that require filling, and knowing my vein issues I make light of the situation and let them know my veins aren't great! To my disbelief it only takes two attempts to fill all 12 bottles and as fast as I'm into the room I'm back out in the waiting area.

An hour or so passes by and we are still waiting in a busy waiting room then I finally hear my name called out and I follow into the doctors room, where I am introduced to Tracey the transplant Co ordinator and Dr Thomas one of the transplant consultants on the team. We chat about everything, from when I was diagnosed, to when I started to decline in health and what my compliance is like, we talk through my results from all my pre assessment paperwork and Dr Thomas believes that everything looks pretty good for transplant and she wants my assessment at Papworth done sooner rather than later so that I can become listed as soon as possible.

I was expecting to be given a date for in 6-10 weeks time but to my utter shock and amazement I am told they have found a 'gap' for me and to be there by 9am on the following Tuesday for my 3 day assessment to be done in 2 days! With the chance if having to return again the week after to meet the surgeon and anaesthetist as they probably won't be available during my assessment period.

So me and mom leave the meeting with mixed emotions wondering why I need the assessment so soon but also feeling really positive that I'm going to get my assessment within a week and not have to wait up to 10 weeks for it.

The night before

Sunday 26th April,

The night before my first trip to Papworth.
Feeling nervous about meeting the team, anxious about what I'll think of it, what they'll think of me, wether I meet their criteria to get an assessment, worried I'll be 'too well' and scared thinking how unwell I'd have to become to get an assessment!
Lets be honest I'm generally shitting myself for a multitude of reasons but can't really put a finger on one.
Worrying myself because I haven't really got anything to ask and I feel I should, just a lot to get my head around and it's all of a sudden sunk in how shit I must be because I've been sent for a transplant... never really had any regrets in my life, but I do wish I'd listened to people, I wish when I was warned and told by docs nurses family and more important other cfs I listened, I wish I had just tried to do that tiny bit instead of doing nothing, but there's nothing I can do now, so I need to close that chapter and leave it in the past and open up my new chapter tomorrow afternoon and start my life again. Be able to have the future I've dreamt of with my family and Em, I want the wedding, I want to have children or at least a child, and I want a job. I want the worry of bills and a mortgage, I want the worries that normal folk have!
Life will be complete when I can have those worries instead of the worries of dying before I fulfill my dreams!

I haven't had a single negative thought so far about transplant not a single negative thing has crossed my mind, it's not going to happen to me, I'm going to get the lungs and I'm going to recover in a nice length of time not rushed and not lasting months and months, I don't mind bumps in the road, I really don't as long as I get the future I want im willing to deal with it and fight for it!

It's a massive week in life, not only have I got the transplant talk at Papworth but then we have my grandads funeral Thursday! But I know I'm strong enough to deal with it, I know I can get through it all! I have a lot of apprehension about tomorrow but I'm so excited about the future it's going to give me!!