Call Numero One - Part Twee (3/4)

The doors to the ambulance opened, I stepped outside and as I took a breath the cold air engulfed my tiny crippled lungs. The journey had been long, I had been tired and the ambulance man had been irritating. The fresh air gave me the waking call I needed as I'd been laying down for most the journey, battling the warmth and keeping calm the thoughts in my head. No distinct thoughts, just focusing on trying to sleep and occasionally sending a text here and there to inform those close to me where I was and where I was going.

My brother and father arrived at the hospital the same time as Elaine and I, this despite the fact we were in the ambulance and had the blue light flashing. It was only at the entrance to the Freeman hospital that we passed them, so you could suggest I could have had an easier, comfier and less annoying ride had I gone with my brother and father. However, my brother and father are quite annoying, so it's six and two three's. Also, from what I gathered my father slept all the way down and he has quite a snore, so it wouldn't have been too relaxing either. Yes, I've mentioned my father's snore as annoying in the past two blogs, that's how annoying it is! Anyway, the doors had opened to the ambulance and I was told by the ambulance man I was to go to ward 30. Prior to this visit I had been to Newcastle twice for assessments and so I knew where I was going and so I made a bee line for the ward, everyone followed on. My focus was just to get to the ward and get on with the transplant and find out what the news was with the lungs.

So up to ward 30 we went and to the nurses desk.

'Hi, I'm Anders Gibson, I'm here for a lung transplant'.

'Oh . . . yes, here is your name, you're in room XX'.

So along to the room we went, Elaine, brother and father. Various people came in to see me, an auxiliary nurse, a staff nurse, a phlebotomists, a junior doctor and a senior doctor, but no Consultant.. I can't remember the order in which they all appeared. I required a few tests, an ECG, a X-ray and some bloods. We had most dealings with the auxiliary nurse, taking my blood pressure, temperature and oxygen saturation. He was a very nice guy, quite jovial and had decent chat with my family, which saved me from having to chat to them. As people came and went all I could feel was my the warmth on my face and the tiredness in my body. As part of the pre-transplant assessment I needed to go and have my tests. My brother joined me for my tests, wheeling me about the hospital taking me from ECG to X-ray.

Now, what with the impending transplant I think my brother had strategically decided to come and wheel me about, he didn't have to, a porter could have done it. A porter did join us for the first part of the journey, but then headed off and my brother took over. I think my brother saw this (and I could be wrong because I'm sure he's not that bright) to take the opportunity to talk to me about some of those things you don't want to talk about. No!  Not parents having sex. All throughout the trip down, throughout the 9 months plus of waiting I've been determined I'll make it through transplant, there is no other option in my mind. However, the truth is I may not make it through, there is a chance things could go pear shaped, and when I was talking to him while waiting for my ECG, that unmentionable possibility that I don't like to utter was potentially hours away. I've never really discussed funeral possibilities with my family much, I feel it's like opening a door to something I would like to keep shut, it's like I've accepted doubt in the possibility of transplant rather than focusing on the positive. I guess I'm as guilty as those who don't talk about transplant with their family as they feel it will bring forward their death, almost welcome it. However, I should know, and I should be smarter than that. I bang on about people needing to sign-up, but maybe I haven't given my own mortality thought as much as I should, or at least I haven't been open about it. The truth is, and my brother discovered this, that a group of my friends do have an idea of what I want when I die (Which won't be for a long time! I'm hoping to make it to an age near to my parents current age of 65. My parents have reached a point where I think I will enclose Dignitas leaflets with their birthday and Christmas presents, just a subtle nudge of course) and they know what I want. I'll write my wishes now so if anyone forgets or is unsure then they can check on my blog. Yes, very personal thing to open up about, but something I think all CF people contemplate, more so than their contemporaries. Anyway, death is inevitable, so one day these wishes will have to be used, just not for a long, long time. Also, I imagine my funeral will be televised as it will be of National importance and so you'll get to see it all anyway and so why not give a sneak preview?

Ok, let's get this sorted, a few funeral details. Songs - Frightened Rabbit/Heads Roll Off, Crowded House/Together Alone and Flight of the Conchords/Angels. Give them all a listen. A strong New Zealand presence in my songs, that goes back to my Maori roots. Ok I don't have Maori roots, but still quite a Maori influence. Ok, as for ashes, I want them scattered in either the Glasgow Botanic Gardens or the River Kelvin that passes through the Botanic Gardens. Not a bin in the Botanics! My friend Elaine said she'll just stick them in a bin. Whilst convenient and quick, not exactly what I'm planning for. Oh . . . and finally I want a Quaker style funeral. I was brought up a Quaker, wouldn't say I was one now, but I do like their style. Also, as for organ donation, I will donate whatever I can to whoever needs it more than I do. Anyway, that's death chat over with, back to the story.

 

 

So my brother wheeled me about the hospital and confirmed he'd spoken to Elaine about my wishes, which to some degree saved me talking about them. After having a tour of the hospital via the ECG and X-ray rooms my brother and I returned to the ward and my room. My dad disappeared at some point as it seemed my mum was going to make it to Newcastle and he wanted to greet her at the train station. When I first got the call I didn't think she'd make it to the hospital in time, but she did! Hurrah for my mum! After sometime my father returned with my mum in tow. To be honest this is all a blur, my Dad may have disappeared during the tests, the main thing I can remember between 9am and 1pm is me lying on a bed, feeling warm and tired. I was so tired I was thinking 'give me a general anaesthetic so I can get some sleep'. Everyone in the room seemed to be chatting, whereas I was extremely quiet, I felt calm, as cool as a cucumber. I had no time for chat, just wanted to be quiet and focused. Also at this point it had become apparent to me that my call had been leaked on Facebook. It wasn't something I wanted leaked on Facebook, as unless there is something to report, why report it? Unless the operation was going ahead I didn't see any point in saying anything. Anyway, it was leaked and messages were piling in. Whilst I wasn't planning for the news to get out that I was in Newcastle, the messages and good will wishes were really appreciated.

 

I was trying to stay focused, taking each little step one at a time. The ambulance journey, checking in with the nurses, going for the tests, waiting to hear my blood results and waiting to hear the condition of the lungs. I guess you can't go into such an operation thinking of the bigger picture, you just have to face each small item and deal with it one by one. There was so much waiting, so little seemed to be happening, but yet it was hectic and intense at the same time, a strange dichotomy. The lungs had arrived the same time as me at the hospital and were put on the rig, they were lungs that needed a boost before being transplanted. If you check my previous blog post on ex-vivo lungs, well those were the lungs I was going to get. In the past the lungs I was going to receive would have been put in the bin, but not this time, they were going to be used for me. So they said they were waiting to see how the lungs were. The lungs spent a few hours on the rig trying to get them up to standard for transplant. In the meantime the  junior doc had been in, I had asked what my CRP (C-reactive protein, a blood result that indicates inflammation and therefore infection) as I had a feeling I wasn't quite right. She replied '70', at which point I was a little confused, but too tired to compute what it really meant in my head. Then after a long time of waiting I was told 'you're going down within the hour, you need to get showered and gowned'.

 

This was the first point in the entire time I really though 'Ok, this is actually happening, I'm actually going through this. There is no turning back'. I had been given the standard NHS gown, one that would display my bottom to the world. I was in a room full of people who had seen my bottom, so I had no issue with that. I'm not one to get my bottom out, but at these times prudish thoughts disperse. I was also given hebi-scrub, a special medical cleaning detergent. So off to the shower I went, I left with focus and determination in my mind. I turned left as I left my room wandered around, but couldn't find a shower. Then after asking another nurse I found the shower room. Now this was the first time I had really been alone since the call came. I was all by myself in the shower, all alone and preparing for the biggest event of my life. The enormity of everything dawned on me. This is it, no more chances, no opportunity to step away. 8 years ago I gave up work to focus on my health, to give myself the best chance of transplant. I had focused on my health and worked so hard to keep myself going and now it was all coming to a point, this transplant is what I had been working for. While I was nervous, while it seemed like a huge leap to take, it was one I had to take, it's one I've wanted for so long. While it could be the end, it was potentially the beginning of something great. I know I was about to hit a huge bump in the road in my life, and for the next wee while there were going to be bumps on the way So I stood in the shower, I applied the hebi-scrub to my chest. I had been told to pay special attention to my chest as that's where they would be opening me up. As I scrubbed I was only too aware this would the last time I'd have my lungs in my chest, next time I won't all be me, I'll  be me and someone else. So I scrubbed, I contemplated and then dried and gowned up. I noticed the shower had leaked and I had soaked all my clothes, pants, socks and trousers were drenched. I picked them up off the floor and headed back to the room.

 

I got back in the room and then just waited, it wasn't a long wait until the Consultant came into my room. I was ready to go down to theatre. . .

 

Now, as like the last post, here is some media stuff I've done and some wonderful medical research I've been involved in. You might even be able to find me singing, let's hope not though. ;)

http://www.breathcycle.com/

http://www.eveningtimes.co.uk/mobile/news/singing-could-boost-health-of-cystic-fibrosis-sufferers-150135n.23251710

 

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!'.

What's this gift of the day nonsense about?

So for those on Facebook this will potentially be your second visit to the wonderful realm of my wonderful world. Come, be seated and no fidgeting! I fidget . . . feel free to fidget.

For a while now on Facebook I've been posting a 'gift of the day' post. Some of you may have found it interesting, others of you less so. So why have I done this? Well . . .and this may sound like the start of a sermon, but it was about being thankful for what we have in life.

 

I think the first gift came from my friend Elaine, a small Lego R2D2 she picked up from her jolly jaunt down to LEGOLAND. Whilst it was a small thing the thought was lovely. So I posted it as 'gift of the day' just to show my appreciation. It may well be Elaine stole it, probably from a small child, but I fortunately can't be sure of this and can therefore only receive it under the impression it was legitimately paid for (which I once again would like to say I doubt). However, this small gift made me think about all the things people do for me on a daily basis, whether that be buying me something of various value (preferably high) or doing me a favour. Too often in life people see what they don't have, not what they do have. I find it in a morbid way quite amusing when people say on reflection of their own life, 'well at least I have my health', sadly that is something I can never say and will never have the chance to say. However, that doesn't mean things couldn't be worse either. So what do I have to be thankful about?

 

One thing about approaching transplant and i notice this more with my own circumstances now that I'm waiting for the call, is how people with CF fool themselves into thinking everything is ok, that we are ok. The truth is in medical terms I'm stuffed, I have lost a right lung due to a lung collapse, my oxygen levels barely get out the 80's and I believe technically I am now in respiratory failure. Yet despite these blatant facts, and even the continued appearance of 'looking ok' (brothers and good friends would all agree I am disfigured beyond any surgical intervention) I am ill, i do need new lungs and soon! However, I still continue to fool myself and others to thinking things are fine, I can cope. The truth of the matter is I've adapted, I've accepted a lesser quality of life to my peers and deemed it as acceptable. As some might say, making do of a bad situation.

 

That's what I find many CF people do, they adapt and then fool themselves into thinking that the lower quality of life, the lower physical activity and capability are all acceptable. So after many years of adapting their lives, ultimately sticking to within the restrictions CF places upon them they discover a norm for themselves. This 'norm' isn't normal, purely an adjustment. So when Consultants approach them and say they need a transplant they are surprised, as to them their quality of life is still good. Whilst I've been transplant watching (keeping an eye on my medical facts and figures) I am just as guilty of this. Despite needing oxygen most the day i still sometimes think 'I can manage like this'. The truth is I can't, I've adapted. With two other transplant approaching friends dying in recent times, it is only too apparent that you can't adapt forever.

 

While there is a deeply negative aspect to this post, the point is actually that people with CF often face the treatment and changing lifestyle with optimism. Having said that, I'd suggest this occurs on a subconscious level. Adapting, accepting and yet hiding the treatment to appear to be as normal as possible. Ultimately grateful for all the small gifts life can give, the ability to get out and about, the desire to go places and the chance to just avoid being in hospital. They work with what they've got and push the quality of life they can have to the limits. This isn't always the case, but I know from the friends I've had and have, this trait is there to be seen again and again. So people, be grateful for what you have. I was at a christening on Sunday, my niece Shannon. Anyway, it's rare I attend a church and it's rare i hear a sermon. This is my sermon and it has been delivered.

 

One thing I should add about 'Gift of the Day' (GOTD)is that there has been a profound benefit to it. At first it was about being grateful for the small things in life, but then people saw my posts and started giving loads of stuff. Brilliant! What was supposed to be about looking at the things we take for granted, soon turned out to be a capitalist project of mine. Day after day gifts arrived in the post, sweets, DVD's, all sorts. It appears I am an unwitting evil genius. So please, keep sending the GOTD and I will post them up on Facebook. Giving is better than receiving, or at least that's what Uncle Santa says. ;-)

 

Now to bring you all back for next week's instalment I will give you a brief description of what is now known as 'Dwarfgate', a comedy gig where a dwarf stomped on stage and revealed all. I will tell you all about it next week. Now go give a gift, go sign up to the Organ Donor register. One day I will post the ultimate 'Gift of the day', my new lungs!

Ta

Doing it for my brother and sisters. Amen!

So here I am once more restarting the blog, but this time, for the first time, making it public. After years of having seen many friends religiously write up fantastic blogs regarding CF, how it affects their daily lives and in many cases their road to transplant, I now feel like time has come to take up the baton and carry it forward myself.

 

So why resurrect my blog? For many it will be the first time you will have seen this blog, it has sat idly for years filling up the interweb minding its own business, sitting alongside the numerous porn sites and cat videos. However in the last couple of weeks I have lost a couple of friends with CF, one waiting for a transplant and another who had a transplant. Both Chloe and Sally are a sad reminder of what a sad disease Cystic Fibrosis is. Not only this, but during the last two weeks I also met the mum of one of my best friends Clare who also sadly died earlier this year. The latter of these three events, whilst sad, was also one of the most fulfilling experiences I've had with CF.

 

Clare and I were transplant husband and wife. We were both on the lung transplant list (the last option for someone with Cystic Fibrosis as they enter the end stage of life). We had only known each other a year or so, but our friendship grew, not because of some unfathomable bond created through the shared experience and recognised empathy that Cystic Fibrosis can create(a bond that I do feel regularly with other CF people) but because of our humour, our view on the world and Clare's 'poo babies'. With CF there are often bowel blockages (inability to poo), these lead to bloating and requires treatment, often as an inpatient and in some cases requires surgery. These were Clare's 'poo babies', an experience I to have had the unfortunate pleasure of having. The bond of shared experience is so valuable in the formation of any friendship in life, whether that be a shared sport, music or even a life experience (parents divorcing). However, a bond that forms what is essentially every part of your daily life and will ultimately lead to your untimely death (all deaths are untimely in my opinion ;-)) is strong. However, this one bond CF does not mean that you see eye to eye with every other CF person on the planet, only that you share an experience that is truly unique and shit. Clare and i not only had that unique CF bond that was formed and held together by sticky mucous and poo that had great viscosity, but we also had all the other ingredients that made a friendship and that made it truly unique.

 

So Clare's mum (we will call her Mummyshark, as that's what Clare occasionally referred to as). Clare had the distinct feeling she was in fact a shark, her own blog was to track her life journey and ultimate return to the sea. Clare wasn't mentally ill, I should state this early on. ;-) She was a quirky thing with a unique sense of humour) came to visit me in Glasgow. Not being well enough, nor confident enough to travel much these days (travel is exhausting and short journeys scupper me) it was ideal Mummyshark coming to Glasgow, as the opportunity to visit her down south was not going to come until after transplant and there is no telling when that would be. Clare's mum showed me photos and told me stories about Clare and it made me feel closer to Clare, it made me miss Clare. One thing that stood out for me was the impact Clare had on people, how she influenced them and also brought them into her life. It not only touched me to see and hear this, but also to see what that meant to Clare's mum. So, while there is much more to say about the life reaffirming experience of meeting Mummyshark and the events that happened that weekend (a half naked dwarf heckling and manipulating his testicles through internal means), what was clear was the difference we all make daily in our lives, the impact we can have and how that changes other people. It is evident the influence Clare had, not just Clare, but other friends I've known too and it is their influence that makes me want to carry this blog onwards. Not only is it their influence but i have an ego that needs stroked, and the possibility that words I write could influence people only comforts that ego , leaving me with a great deal of satisfaction, but also exacerbating the need for it to be stroked.

So it is for my friends, their fine blogs and lives that I now write my own blog on a regular basis (at least weekly updates). I want to show what CF is about, because far too often people see your face and say 'you look well'. Well it's not my face that needs the transplant, it's my lungs. So I will not only tell you my journey to transplant(and what a shit scary journey that will be), but also how CF has affected my life, mentioning the good, the bad and the Ann Widdecombe. All of this I hope will be laid on a warm bed of humour and sprinkled with jokes.

 

The wonderful Clare McCruickshark

 

2 years on. I think I have something to say now.

So....it's been two years since my last blog. Well...a lot has happened, especially in the last year. In fact it's about this time last year things went a bit pear shaped. I managed to get the flu, didn't realise at first and battled it out at home. After a few days I gave way and decided to go to hospital. On arrival at hospital it appeared that I was a tad dehydrated and my kidneys had gone into failure, that's right...kidney failure. Jesus! So I was admitted, but they couldn't give me antibiotics because my kidneys couldn't take it. I knew I was ill, but how ill, that I don't think I realised.

They put me on 4 litres of oxygen and continuous fluids to re-hydrate me, but even that wasn't enough. I woke up in the morning gasping for breath, I buzzed the nurse and begged them to start IV's as I could tell things were not good. I finally got some iv's and some heavy duty steroids infused. This was all good, but my body became massively swollen. Not only that my gums for some reason cracked and my lips were all swollen. It was a very unpleasant time. Not only was my health taking a hit, but due to the nature of my crash (kidney failure) my team were concerned about whether my kidneys would be good enough for transplant. The thing that I have been focused on for the last decade, the reason I gave up work and the reason I have tried so hard to stay fit was potentially being taken away from me. I was devastated.

Not only that, but whilst this was all going on my partner and I were clearly on our way to splitting up. The week before I was admitted into hospital, my partner had doubts about our relationship. So whilst worrying about my health, my kidneys, my lungs and potential transplant, my 11 year relationship was also coming to an end. If anything, the concerns regarding my health put my relationship in context. If I cared more about my health, than my relationship, then maybe that was a sign the relationship was right to end. I think so. Ill health certainly puts life in perspective and makes you realise what's important.

Sorry for the grim update, will try better next time. However, there is still a lot to update you on, some grim, but I promise some good. However, that's life isn't it? The good, the bad....and well...me...the ugly.

I'll leave you with a wee song by my favourite band of the moment. Frightened Rabbit are from Scotland, Selkirk to be exact. People occasionally say to me 'you're so inspirational'. I think they say it cos I have CF. Nothing inspirational about it, just a person dealing with their situation. However, I would like to think that while I'm on this planet I could influence and encourage people. No matter who you are, how popular, unpopular, famous or not, you will influence someone and that will make a change. Like donating your organs, no bigger influence or bigger change you can make to someone's life that that, is there? Enjoy FR.