Call Numero One - Part 1 (1/4)

And so I had my first call. Yup, my first call for lungs. You have various scenarios played out in your mind as to how the call will happen, what you'll do, what you'll say and how it will evolve. The truth is, and despite thinking, concentrating and contemplating the call for 9 months, nothing plays out as planned.

So I was watching 'Breaking Bad', a fine series that i'm gradually making my way through. I was just about to go to bed when the phone rang. It was 12.50am, so I knew straight away who it was and probably what the call was about. It was one of the Newcastle Freeman's Transplant Coordinators.

'Hi, is that Anders?' (Coordinator)

'Yup' (Anders)

'Just realised we haven't spoken for a while, thought we'd just see how you're doing'. (Coordinator)

The transplant coordinator was extremely laid back, almost seeming like she had just phoned for a chit chat cos she was bored and nothing was going on. So after about 5 minutes of general chat about what I'd been up to, I asked ,

'So, I take it you're phoning cos you have some lungs for me?'. (Anders)

'Well there are a few things happening at the moment. Anyway, don't worry, just go back to bed and we'll give you a call if anything happens'. (Co-ordinator)

I was told they would probably know more by 3am, but that there was no certainty in that. As you can imagine the suggestion that I should 'go back to bed', was one that was never going to be fulfilled. I realised when I got off the phone I was shaking a little. It had been that call I'd be waiting for, it had come, they were thinking of me and lungs might be available. However, there was no certainty in any of this, was this 'A CALL'? I had no idea. Having discussed the transplant process with others who have been through it, it appears you get a call saying an ambulance it on its way to collect you and then you're on your way. This was however a very different call, it was a, 'hmmm....we might....maybe...have something for you...or we might not'.

So once off the phone I phoned the relevant people that were going to go to Newcastle with me. I think I called my Mum first, but she was down in Southend and was without a car. My initial thoughts, not knowing how the call would unravel, was that she wouldn't make it to Newcastle in time. Therefore, I knew my brother would probably be driving down and potentially taking my dad. I however phoned my friend Elaine before I called my brother and my Dad. To all of them I stated, 'I've had a call, it doesn't mean i'm going to Newcastle, we just have to wait and see what happens and so stay where you are cos nothing may happen'. By the the time I called my brother it was 50 minutes after I received the first call. I obviously spoke to Elaine and my mum for a wee while, and to the transplant coordinator for a wee while. I also called my friend Lisa who was also waiting, as I knew she would be awake as she has a stupid sleeping pattern and I knew she'd be interested. My mind was buzzing and I was thinking 'who can I talk to, who can I speak to about this?'. So whilst I told my family and Elaine not to go anywhere and stay in their homes, it was because I didn't want to cause fuss, not because I wouldn't have minded the company, not because I didn't want someone around. Anyway, about 40 minutes after I spoke to my brother I could hear keys at the door, my brother had turned up. He had driven up from his home in Ayrshire just to sit with me until we heard news. About 10 minutes after that someone knocked on my door, my dad too had decided to ignore me and turned up at my door. I told them it wouldn't be until 3am at the earliest I'd know anything. So we sat in my front room, I put on Blackadder on Netflix. Blackadder is like an old familiar comfort blanket. I know the script inside out, I don't need to concentrate on it, but it's light and it makes me laugh. During University I was watching on an endless circuit Blackadder, Alan Partridge, Father Ted and Star Wars. If I'm watching any of them then the world is in order and everything is ok. Calm is what I needed and calm is what Blackadder provided.

So 3am came, no call. I waited until 3.40 and then tried to ring back, but I failed. I couldn't get through. By 4am there was still no call. At this point I was thinking that the lungs had gone somewhere else. My thoughts were that I was initially a possibility, but someone else needed them more and was now receiving them. No doubt I would receive a call in due course, but for now they would be dealing with the transplant and I'd get a call later telling me the lungs had gone elsewhere. I wasn't disappointed, I knew the enormity of what may lay ahead of me. I also knew I had the capability to wait for lungs, not everyone waiting has that. It was nice to know they were thinking of me, sometimes you wonder.

 

So at 4pm I decided to 'go to bed', but did I sleep? No, of course I didn't. Until they call and confirm what's happening your brain is contemplating what the near future might bring. So I lay there in my bed, my brother in the front room trying to sleep on one sofa and my father successfully sleeping and snoring on another sofa. If I couldn't sleep from thoughts, I certainly couldn't sleep from the snoring of my father. So I lay there, my cat Boris had come to keep me company. Then 5am and the phone rings, I grab it, it was right next to my bed, I had laid it there so I could just reach out and snatch it. Once again I knew who it was and I thought I knew what she was going to say, but I was wrong. I had expected the lungs to have gone elsewhere, it was four hours after the initial call and so what were the chances these lungs were for me? Little I thought. I thought wrong. 'Anders, I've sent an ambulance to collect you'. The Coordinator said a lot more than that, I just didn't take it in, I just thought, 'right, we've got to do this'. What she said may have been important, but I didn't get any other message other than, 'these lungs are for you!'.

 

 

It's all getting a little bit technical . . . (A picture of my lungs).

So now for the scientific bit. I often write about thoughts, feelings and expectations of having a lung transplant, but not too often of the actual operation, what it involves and the difficulties I face during and post operation. There are some graphic pictures in this update, so I apologise for that - that's a warning! So here it goes, time to get slightly medical, slightly scientificy.

 

Firstly, lets take a look at my lungs. As you can see from the picture below, they aren't the best and a lung transplant probably isn't a bad idea. My right lung has completely collapsed. It collapsed last May. It wasn't a pneumothorax (a type of lung collapse), it just died due to being rubbish and filled with infected mucus. I was quite fortunate in the sense it wasn't a pneumothorax, as they can be quite sudden and scary. My lung did collapse over a weekend, but I just experienced a backache and slight shortness of breath, it had little affect on my ability to get about. In fact I think it had collapsed for at least two days before I decided to go to hospital. I like to think my lack of urgency to get to hospital demonstrated my strength and ability to handle pain and suffering, however, it may just display my stupidity and foolishness. Either way I had a lung collapse. My lung had been 'shrinking' for the previous year, the lower lobe on the right side had disappeared and so there was evidence that my lung was slipping in that direction. In fact it was the shrinkage, along with kidney failure and a few other factors that I believe made the Newcastle Transplant team speed up the lung transplant assessment process and see me, ultimately accepting onto the transplant list.

 

 

 

 

Anyway, back to my x-ray (the one on the right). As you can see the whole right side has gone, so there is no functioning lung there. Since the lung collapsed my heart has moved over, as has my windpipe. When this first occurred there was a little concern that it could affect transplant. However, the transplant team at Newcastle are known for transplanting difficult cases and so apparently they weren't too bothered. Not to say mine is difficult, but the degree of difficulty isn't beyond them and that's the important and exciting thing. However, the fact my lung has collapsed will probably make the operation a little longer, a little tougher. They guestimate the operation should take between 8-12 hours, so it's a long one. I'll be out of it, so tougher for those around me. Usually I ask for my music to be played while I'm in theatre (I think I had 'Admiral Fallow' last time, check them out), but then I'm usually awake and so no need this time. Without doubt my right lung is the ruined one, the good one isn't great, quite a bit of shadowing lower left, and mid left. For those of you learning here, I should inform you that your right lung has three lobes (sections), whereas your left lung has two lobes.

 

So the plan is to take out my two lungs and stick in some new ones from a very generous, kind and thoughtful person. I often get asked 'so when is your transplant?'. To those in the know that is the most stupid question in the world. A lung transplant can't be planned, you are waiting for the someone with the right match to die. There can be no knowing when that will be, who that person will be or if it will ever happen and therefore you can never know when your transplant will be. Obviously you need someone else's lungs and that other person can't survive without their lungs, so logically you are waiting for the sad and unexpected death of someone else. In recent times I actually had a Dr (Consultant) ask me when I was expecting my transplant. I was astounded! Not a respiratory Consultant, not that I think that's an excuse. 

 

Anyway, as I said, they are going to take my two lungs out, this is called a Double lung transplant/Single Sequential Lung Transplant. They are taking both lungs leaving in a an infected lung would only infect and kill the new lung.  I'm now going to quote from the wee booklet they give you to help those who are going through the transplant process,

 

'If you have infective lung disease and your heart is healthy, it is possible to transplant two lungs while keeping your own heart. The wound will stretch across your chest below both breasts. Although the nerve supply to both new lungs is cut, your windpipe will still be able to send messages to your brain to make you cough'.

 

So the good thing is I have a good heart and I get to keep it. It's better to transplant just the lungs, while potentially a slightly harder operation to perform than heart and lungs together, post-transplant you are in a better position because there are less organs to reject and therefore less risk afterwards.

 

So for that incision. In the past they would cut you down the middle, however now they cut you underneath both breasts and perform a 'clamshell incision'.  This will be what I'll be going through. The thought of this is scary, scary beyond belief. I'm quite good at dealing with all the medical procedures I've had, bronchoscopy, hernia, portacath insertion, chest embolisation, the list goes on , but this is beyond comprehension. This is something I don't even want to think about, something I can't think about, certainly something I prefer not to dwell on, as the picture below will one day be me. Now....this is a very graphic photo, so stop reading now if you are eating.

 

 

 

 

Well....if you're still reading, thank you for sticking with it. Did you notice the lack of lungs? I'm going to reward you with an even better picture, one that will blow your mind further. While still blowing your mind and being graphic, it won't be as graphic as the above photo and hopefully will just interest you rather than make you feel queasy. This is a wee video about ex-vivo lungs. I know what you're thinking, 'what are ex-vivo lungs?'. As I'm sure you know there is a shortage of organ donors, only 50% of those waiting for lungs are ever fortunate enough to receive them. Lungs are particularly low in terms of numbers transplanted. Often lungs can have slight damage or not be deemed fully up to the level required for transplant, but in very recent years (still in a trial basis) they have created a procedure whereby they can make some lungs previously deemed not suitable for transplant, suitable for transplant. What they do is they put the lungs in a box and then put a solution through the lungs that cleans them, freshens them up. I know, I've not described it in a particularly scientific manner, but ultimately that's what happens. It is a procedure that they expect will increase the number of lung transplants they perform and therefore save more lives. As I said, it's still in a trial basis in the UK, but the results are so far positive.

 

 

So I have explained why they have to take two lungs, why I keep my heart and how they'll open me up and what it will look like. You've also learned about 'ex-vivo' lungs. The ultimate aim is to have an x-ray like the one I showed earlier on the left hand side. Now for your final video. These could be my lungs before they go inside me. Oh . . before you look at it, I should point out that little of what I write is 'scientific', just my understanding of procedures. No doubt I've poorly explained things or assessed my x-rays poorly. Now look at this magic video.

 



Mr Jibbins, what's the muse?

So Christmas has passed and New Year with it. 2014 eh? No shortage of people saying 'I'm sure this is the year for you Anders'. Let's hope so. 9 months waiting is plenty to me, but as I was kindly reminded by two friends who have been through the big TX (term used to mean transplant by transplant people. Not sure if there is some medical reference to it, but I think there is) that 9 months is nothing. Both the people I speak about waited over twice as long. I know! Twice as long?! Jesus. I'll be licking windows and sniffing various adhesives by that point. Even their wait is nothing, I know of a girl who waited over 4 years. 4 years in this limbo would be a true mind fuck. However, having said that, having complained, and yes there is reason to complain, I'm lucky to still be kicking about, writing nonsense and hoping that I do get those new lungs, no matter how long I wait.

 

Anyway, as I said, a New Year, a clear indicator of a passing of time. No better indication that the World is turning than the inevitable ding donging of Big Ben, the midnight fireworks and smell of alcohol and vomit from all your friends breaths, the arm round you and a voice saying 'I love you, I think you're great'. In true New Year fashion I did experience all of these things. So with this time of reflection, what did I do? Well....I reflected. Never been a fan of this time of year, with CF (and I think a few CF people find this) you are reminded of your mortality. Although reminded of my mortality I watched Highlander and convinced myself that I was in fact immortal for a short time. However, I was admitted to hospital on the 2nd of January with an intestinal blockage (DIOS - distal intestinal obstruction syndrome), so that fantasy didn't last long. There is only one, sadly that 'one' isn't me. I don't remember a scene in Highlander where McLeod's life was in danger due to being unable to evacuate his bowels, but then there were few toilet scenes in Highlander, something I believe is lacking in modern day Hollywood. However, much like McLeod after he was killed in battle, I too somehow managed to survive my battle and live to tell the tale. I too, once again like McLeod, was ushered out of where I was, not because they thought I was possessed by the Devil though, but because they needed the bed for another patient. If I had been possessed by the Devil, after the drugs and enemas I had to suffer, I'm pretty sure the Devil would have packed up shop and left. In fact with my final push I'm sure I heard a small voice shout 'Noooooo......I'm drowning!!!'.

 

 

 

Reflection, that was the point of this post. Yeah, it's been a time when friends have announced their pregnancies to me, some just got pregnant, some about to give birth. So not only have I been reminded in the usual New Year fashion of the ticking of time, but with the joyous news of friends upcoming kids, it made me only aware that I'm in limbo. Friends are making decisions with their lives, moving forward and I'm static. To be honest it's been like this for some years due to my decision to give up work and focus on health. My lung function has been low for a long time (below 35% for 8 - 10 years, if not more) and so making plans or thinking about change is difficult because transplant has always been around the corner, always there telling me to hold back because it won't be long until I need one. Well, after a lot of work I'm there, I'm on the transplant list, but the inability to make decisions or contemplate making real life changes can't happen until I'm fitted with new lungs. I used to say that with Cystic Fibrosis you had to get a balance. You could go out every night and party and burn out bright or you could sit in a room all day and do all your treatments, cut yourself off from any infection. Well, I've tried to get that balance throughout my life, sometimes over doing, sometimes under doing it. However, now I'm on the list I truly feel like I'm closer to the latter of the two. I tell myself it's only temporary, once those lungs come and I've recovered I can make decisions again, I can make plans. I can live life.

 

This limiting of my limitations isn't wholly psychological, there is a physical aspect to it too. I've decided to stop staying away from home, as I find it stuffs my medical regime and routine. When I do stay away I become tired, exhausted and spend a good few days trying to back things to normal. Last time I went on a weekend trip I came back with a collapsed lung. So as I said, it's not been a purely psychological decision, there is evidence to show my body doesn't like doing too much out of the ordinary and as such I play things cautiously. The truth is that, although I am doing better than a lot of people waiting for lungs I could well get an infection and things could go tits up, things are in some ways balanced on a knife edge. It's not a coincidence that 50% of people waiting for lung transplants die waiting for them, it's because they're very unwell and that's why they need them. I can't fool myself that I'm anything but ill, no matter how used to it I've got, no matter how normal it feels to breath like this or require oxygen. So in the meantime I will live in limbo, I will live with all the limitations that I place upon me and wait for them to be lifted. I will continue to wait to be 'The One!'.