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.

Heading towards the end of iv's

So I'm now only a couple of days away from the end of iv's and steroids. At this point in the process I'd hope to have improved and thankfully I feel I have. I've been pushing the exercise within the last two weeks, taking my portable o2 concentrator to the gym and trying to get my lungs working. I feel better, I'll never feel normal, but I feel better. The trouble now will be the comedown after steroids and iv's, hopefully it won't be too much of a comedown and I'll hopefully sustain this level of health for a while. Last week I was feeling pessimistic, but tonight I feel optimistic. The changing nature of my outlook really does exemplify the changing nature of CF, one day you can feel ok, the next your chest is full of gunk, bleeds and breathlessness. In some ways its like Glasgow weather, its generally shit, but occasionally you have a great day and you think 'wow, if only this could last a while', but then it doesn't and it starts sleeting in the middle of June.

Anyway, its almost been two weeks of pretty much dedication to medication. But if you wanna be the best and you wanna beat the rest, oooh, medications what you need. Although it has been pretty much medication, gym and activity for the last two weeks, I have done other stuff too. Went to see Russell Kane on Friday, he was very good. I also went to a party Saturday night. One of Elaine's friends turned 30. Funny thing was that there were only two guys at the party, me being one of them and at one point I thought I was going to be the only guy. For the brief time I was there as the only male representative I quite liked being the 'eye candy', it doesn't happen all that often. However, after about an hour the other guy turned up and he was taller and probably more handsome, I soon turned into the small skinny, runty one. Still the ratio of 7 girls to every guy is better than average.

In the past week I also went to a charity comedy show in aid of PATH at The Stand . Please check them out.

http://www.pathscotland.org.uk/

On the iv's, the steroids and the good times.

I haven't been too great recently, been feeling breathless. I was breathless walking from room to room in my small flat, even breathless putting my shows on the other day. It was getting rather worrying. I had tried a couple of different oral antibiotics, but they weren't really helping and so Intravenous antibiotics (IV's) and steroids seemed the best step to take. I've also been coughing up a bit of blood lately, this isn't unusual for me, but it makes fighting infection harder.

Although my lung function isn't great I have adapted my life to cope with it, I don't do long walking and generally I can cope with the things I do, basic tasks are generally doable, even if extra time is needed and I need to stop for breath. However, recently I was finding the basic tasks a little difficult and it was a real insight into what its going to be like once I get worse. To be honest, I'm still worried that after the steroids and IV's I'll drop back to where I was, if that happens, then transplant maybe a little closer.

In fact, on the matter of transplant, when I was at hospital recently I was reminded by my very good and very dedicated physio that I need to do an exercise test soon. The exercise tests they conduct at my hospital involves walking for 6mins, they measure your oxygen levels, your heart rate, the distance you can walk and the difficulty to which you find the task. So basically, if I feel like I did prior to IV's when I do this test I can't see anything but a poorer result. Since I'm already flagged as one of those individuals they need to 'keep an eye on' for transplant, I can't help feel that the latest breathing difficulties could be the straw that break the camels back and result in a transplant referral. My physio said whilst talking to me 'you already have reasons to be referred for transplant, so its important we assess you and don't miss the window to refer you'. It was a fair but worrying reminder that although I've battled hard to keep static and maintain my lungs, this battle can not be won forever, sooner or later I'll need that transplant.

I have hopes that maybe I could keep this lung function for 10 years or so, by which point transplant techniques and post transplant care was better, therefore extending my life considerably more than if I were to be transplanted now. I've done well to hold onto my lungs for 6/7 years, I've maintained my fev1 (how efficient my lungs are), but I have lost a little capacity in that time. The docs always stress that the fev1 is the important figure, so the fact that hasn't dropped is pretty good. Anyway, that's enough about health, perhaps too much about health.

Anyway, the gigs I went to. Ben Folds was really good, as was Admiral Fallow. The Ben Folds gig was boiling, I was dripping away on my seat. To be honest the heat had a negative affect on the enjoyment of the gig. Admiral Fallow were also very good, but perhaps a little less experienced in working the crowd and showmanship. I've got a couple of gigs lined up now, Russell Kane Friday and Tim Minchin in a couple of weeks. Also off to a charity comedy gig on Wednesday, so hopefully that should be fun too.

 

Here is some Ben Folds. Enjoy!

 

 

 

 

 

Gigs, Gym and something else that starts with 'G'

Well...it's been a horrible winter. I was couped in the house for months. It was just too cold to go outside, i just couldn't breathe. Christmas was kinda cancelled, as was New Year. The festive season was disrupted by horrendous weather and terrible illness (luckily not me, but the rest of my family), much disappointment. The weather seemed to have more influence over my quality of life than CF did. Having said that, perhaps if I had good lungs I could have done more.

However, I wake today and the sun is out, it's a pretty day. I've got hopes that the winter is over, it's just gone on too long. At least I'll be able to go outside and enjoy decent weather for once. There have been days of occasionally niceness, but even in that niceness you know it is only a fleeting moment of goodness in a harsh winter.

So what with the weather getting better life returns back to normal. I'm now back at Citizens Advice. I took a wee break during the winter. I've also joined a gym. I've often belonged to a gym, but mine closed 18months ago and I've never found another one.....until now. Whilst my health had been stable I felt my exercise capability has been much reduced. Only a month ago I went for a 15 minute walk (by my already poor standards), it took me 50mins with the stopping and starting. I also had oxygen on, but I could barely move or breathe. I decided I needed to join a gym. Within only a weeks of joining the gym I already feel better, my figures may not be better, but I feel I am. Sadly, in contrast to feeling better, I think the added pressure has caused me to cough up blood again. Since joining the gym I've almost coughed up blood everyday. I now have to weigh up the cost of producing blood against feeling better.

I'm not one for New Years resolutions, if you want to change something you just do it, you don't need a date or some sort ceremonial occurrence for changing things in your life. For a while I've been planning to go to more gigs and get out a wee bit more. As a student I went to gigs all the time, surrounded myself with smoke and drowned myself in alcohol. Maybe many look back at their student days as their favourite days and want to recapture the days that brought joy, a little fun and a bit of unpredictability. Ok, now there will be less smoke when I go out, there will also be less alcohol, but i love music and I need to get out there and listen to more. Went to see the 'Burns Unit', hoping to see 'Admiral Fallow', 'Ben Folds' and 'Cold War Kids'. I've also got tickets to see Russell Kane and Tim Minchin. I leave you with a link to the master Ben Folds in his 'Ben Folds Five' days. Enjoy.

http://www.youtube.com/watch?v=gV4hIy0zfps

Funny Episodes (2)

Ok, so it's fair to say I won't be winning any awards for the best blog of the year. Unless of course I post something really, really insightful, something really ground breaking in one of my posts. Maybe somehow through my musings I'll discover the reason for living, or accidentally uncover the explanation to the JFK assassination. Point is, I really should post more. Not that I'm looking for awards or anything, but if you have one handy?

Anyway....I left you with a cliff-hanger, I say cliff-hanger, I think with the amount of time between blogs you will have definitely lost strength to hang onto that cliff and will have fallen to your death. However, despite my poor ability to update the blog, I will continue.

Yes, a diagnosis. Well, after having suffered more of these episodes, one of which occurred while out and about, I decided to push the doctors again on the matter. So I spoke to one of my CF Doctors we will call him Dr Biscuit, it's not his name, but it allows him to remain anonymous. Dr Biscuit was intrigued by the reports of my blurry vision and so he had me admitted and referred to another Neurologist Consultant. We will call the Neurologist Consultant, Doctor Nintendo. Anyway, after listening to my symptoms Doctor Nintendo decided I was suffering from migraines. From this point on I was given a new drug to try to see if it alleviated my symptoms and reduced the occurrence of the migraines.

Now, this drug duloxeitine is generally used for depression, but apparently also helps with migraines. I don't suffer from depression, although I do wonder whether I get SAD. However, living in Scotland this winter will not have helped any ones mood this winter, it was grim. I have digressed. Duloxetine caused me a few problems, firstly I puked for the first week of trying it, so I altered the time I took it to late on in the day. Changing the time of the drug only resulted in insomnia for a week, I had about 3hrs sleep everyday that week - nasty! Eventually an anti-sickness drug was prescribed, it's an anti-sickness drug they give to people with chemotherapy. Once I started taking the anti-sickness drug, everything seem to settle, no puking, no insomnia and no puking whilst suffering from insomnia.

I still have these funny episodes, but the symptoms are milder (funny vision, pins and needles in arms, legs and tummy and a splitting headache) and I am calmer when they occur. In fact, I'm seeing the neurologist soon to discuss how they've been and to discuss the response to the drug. In recent times I've also become aware of anecdotal evidence that other CF people suffer similar symptoms, and that research has been done on it, so I may well discuss this with Dr Nintendo. One thing these migraines have done is added more drugs to my already extensive drug card, I now have over 26 drugs on a daily basis - beat that! I'm so proud of my mangled body.

OK, now onto something slightly more interesting. As you may or may not know, I love football. However, due to my rubbish lung I never quite made it as the next Maradona, although I have tried to emulate his great drug taking (although mine are legal). In the last few months I have created my own football team, no computer based management for me, I am manager of Scotstoun Park Galaxy. We have had three games so far, lost two, drawn one. It's early days and we are playing established teams, so we hope to do better. In fact we have a game this weekend. We are sponsored by the 'CF Trust', and 'Live Life Then Give Life'. I say sponsored, I asked them both if we could use their logo on our football tops.

Funny Episodes (1)

So..where was I? Yes, I was about to go on about my collapsing and my very bizarre experiences.

The first of these 'funny do's' happened a year and a half ago. I was sitting on the couch watching the quite amusing 'Tropic Thunder' on DVD with a friend. I started to laugh during the comedy (as one is supposed to), I coughed and felt a funny feeling in the left side of my chest. I started to feel weird and tried to put on my oxygen, but my hand couldn't put on my oxygen properly. My friend put on my oxygen for me. My legs and arms felt like they had pins and needles and my vision went blurry. I could still see, but there was a mirage effect. The vision effect was not distinctive to one eye, but to both in the same place. Apparently all colour went from my face. My legs felt cold and dead. I asked my friend to call an ambulance, I truly thought I was on my way out.

It took a couple of minutes for the ambulance to arrive. I was a tad confused as they asked me question, but I think I was able to respond adequately enough. They checked my heart, my oxygen sats and my sugar levels and all were fine. During the time they were there I started to recover. Feeling returned in my arms and legs and my vision returned. All seemed OK and the ambulance men asked if I wanted to go to hospital, I declined. I honestly felt fine again, it was all very weird.

Anyway, later on the next day, just as I was doing my late physio I had another similar experience. However, this time I tried to get to my oxygen concentrator and switch it on. Whilst attempting to get to the oxygen my symptoms got worse, so much so my vision went blurry and I lost feeling in my legs and collapsed to the floor. I couldn't see properly, I couldn't move arms and legs and I felt really cold. My friend once again got my oxygen for me and made sure I was kept warm until I recovered. I've never lost consciousness during these episodes, I've been quite with it. Anyway, after these two episodes over the weekend I thought it was best to go to the hospital on the Monday.

Since this is a story covering almost two years I'm going to split it into two. This part will cover the first year, the next instalment the more recent stuff, including a diagnosis. Anyway, where was I? Yes, hospital. So to hospital I went. After initially being told to go home, I asked for a second opinion as I was quite concerned by this occurrence. I was admitted into hospital for a week, then checked my heart, brain, spine, lungs and found nothing. From a heart attack, to a stroke, to a severed spinal cord, many options were explored. I saw a neurologist who confirmed it wasn't a fit of any kind. In the end it was referred to as a syncope related episode, meaning, It was a fainting episode. However, that wasn't the final diagnosis and it wasn't until a year and a half later I had another diagnosis.

Until next time...

Da Family

In recent times I've been watching a few of the BBC series 'Who do you think you are?'. To be honest I've been watching a lot of the old episodes and therefore been playing catch up. Watching the likes of Stephen Fry, David Tennant and Jeremy Clarkson discover about their family has made me wonder about mine. Not only have I wondered about the history within the family, but I've also considered the genetic history within the family. As some of you may or may not know, CF is a genetic condition. The gene is recessive, therefore individuals can carry the gene with no affects. It is only when two individuals that carry the gene decide to have offspring that there is a 1 in 4 chance that their child could inherit both copies of the gene. If a person has two copies of a CF gene, then they have CF. So my thought regarding my family tree are, where did my copies of the CF gene come from?

I have the most common CF gene, Delta F508. I know what gene I have, so if given DNA tests I could confirm which grandparents my CF gene came from. Whilst it may be possible to identify whether my mothers, mother carries the gene, identifying the gene in my other grandparents may not be so simple. Sadly all my other grandparents are deceased. Whilst digging them up might have been an option, it is one I doubt my family would have accepted, even in the pursuit of scientific knowledge and understanding, something I'm sure my Grandparents would approve of. All my Grandparents have been cremated, so I can keep the spade in the shed for now and I can also avoid prosecution for desecrating a grave.

So I'm now wondering whether second cousins carry the gene. Trouble is, many people only get tested to see if they carry CF if they are planning on having children. At present not all my relatives are thinking of having kids, some are still teenagers, so I can forgive them for not trying. I don't think it would be morally responsible for me to encourage them to have sex or to get pregnant. I don't want to be known as the perverted relative who promotes underage sex.

Anyway, this family tree and the origins of my CF gene are something I want to explore more. Where, if anywhere, my intrigue leads me, who knows?

On a separate, more daily issue, I'm off to hospital today. Had a couple of mini 'CF do's' in the last few weeks. I will explain what a 'CF do' is in my next post. To be honest, there is no real definition, neither in terms of my episode or in terms of a 'CF do'. I'll explain more next time.

I'm back!

My goodness. Who would have thought that my blog would still be open? Surely it should have been closed? Isn't it some sort of environmental hazard to keep such rubbish open and exposed for so long? You would have thought it would have been buried deep, far beyond anyone eyes, deeper than a Giles Brandreth jumper or John Terry's morals? Anyway, luckily for me the blog is alive and well. OK, maybe not well, but it's alive.

So I take up the reins again, almost 4 years after I last spraffled on this blog. I don't think spraffled is a word, but I'd like to spread it. 'Spraffled' means to write or talk nonsense, similar to waffle, but even more nonsensical and producing even less conducive discourse. Anyway, spread the word. I went to see a comedian called Alex Horne not too long ago and as part of his show he relays the produce of a project of his to get certain words into the dictionary. I recommend you visit his site. http://www.alexhorne.com/ Very funny man, he reminded somewhat of Dave Gorman, not just in comedy, but also in facial hair.

Anyway, I hear you say (I hear me say, not sure anyone would read this), why back here after so much time? Well, I was writing on the CF Trust forum, having a rant, wondering whether such a forum was the place to have such a rant and wondering whether I was trying to gratify my own desire to be heard by others by spraffling on about various CF perspectives on life and how that perspective alters overtime. In the process of having this rant the sodding computer decides to take over and censor me by deleting the post. OK, maybe I should thank the computer for protecting me from myself, and alleviating the pain on others with CF of having to read my rant - have they not suffered enough already? Point is, I was in the middle of a rant and I still wanted to express my thoughts, but realised it wasn't necessary to share those thoughts with the general public. I then remembered my blog.

OK, what was the rant about? I was looking at a site a fellow CF peep had posted called 'CF Voice'. Anyway, there was a section in the adult bit called 'Living Uninsured'. I kinda hoped the video would be about the flawed health system in the US, but it wasn't. The girl talks about living life to the full and not letting CF get in the way. This sentiment I fully agree with. However, she then says that she sees people with CF being frightened to death about the next bug they catch or picking up something from somewhere and that those thoughts restricted them. After the 'I live life to the full' sentence(I'm paraphrasing), she then says her lung function/fev1 is 70-80%. This is where I have my problem.

When I was healthier I clubbed 6 nights a week, went travelling round Europe and N America. I wouldn't let anything stop me, there wasn't any limit on life. However, my lung function is now around 30% and I can't do the things I once did, no more clubbing, no more free travelling without care. However, I still live to the best of my ability, but I do live with that fear of catching a bug or having a lung collapse that could really screw me over. When I was 40-50% lung function I still didn't have a care, just like the lady, but now I have no choice but to be wary. My perspective, as does others, alters with decline. Whilst some say they live life to the limit, the point is that there are limits and those limits change.

I, like I'm sure others with CF have sometimes queried others for the way they deal with their CF. For example, I've never understood why some people with CF don't disclose their CF? It isn't anything to be ashamed of, you won't be stoned for it. In fact, to step up and say 'I have CF' I believe is the stronger thing to do, it means you are content with having it, you don't need to hide it and as a result any dips in health or treatment can be properly confronted without feeling you need to hide behind a curtain. In a similar way individuals are open about being gay, religious or ginger, people with conditions of health should be open too. Not that I'm comparing them all, I'm just saying that in this day and age people should be open and allowed to be who they are and not feel the need to hide a condition in fear of being treated differently. The point here is that people with CF choose to deal with CF in different ways.

Having said all that, I cannot say to someone else with CF 'that's the wrong way to deal with CF'. Some people like to disclose they have CF, some don't. Some people like to live life with CF burning short but bright, while others like to be a dull glow for a long time. We all deal with our CF differently and have different techniques, aspirations and philosophies on how to deal with CF. So my point, whilst perhaps on occasion being slightly hypocritical, is that, the lady cannot be critical of others for letting CF 'get in the way'. Her limits are not the same as someone's on the transplant list and on o2 24/7. I think Gandalf said it best to Frodo,

Frodo: 'I wished the ring had never come to me. I wish none of this had never happened'.

Gandalf: 'So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given us.'

Sven Goran Who? People can be annoying. Am I a performing monkey?

On Friday I managed my first football team and whilst the result wasn't perfect (we lost 7-2) the team we were playing against were a proper team that knew each other, whilst my team was a bunch of mates and randoms just stuck together. I even got a shot as goalkeeper, but being 5'7"(8") I haven't quite got the height for a keeper. I could barely touch the crossbar while on the goal line, not really ideal for a goalkeeper. Yes, I know I must be a dodgy manager to put a dwarf in goal, but my first choice keeper was having a nightmare and was begging to be taken off. To be honest, I don't think football management is a realistic career move for me, at least not yet.

On Thursday I played footy too. I play at my local sports centre, I say 'play', I tend to walk around the pitch or go in goal, there really isn't any running involved. When you have lungs the size of a packet of crisps it's very hard to run, in fact just to survive the match I have to take pain killers to dull my coughing reflex. Oh....how I love cocodamol! Yes, I know it's addictive, but I only take it for footy - no need for rehab.....yet!

That's one rubbish thing about CF, none of my drugs have a decent street value. I guess I could sell them to third world countries, but I think the large pharmaceutical companies are already dominating that market and shafting various countries in the process. Oooh....I'm being all political.

Anyway, I was planning on telling you about Thursday. As I was saying, I play at my local sports centre. At the sports centre there are specific disabled car parking bays, these are often wrongly taken by non-disabled people. Due to having poor lungs I find getting around tough at times, especially when ill and because of this I have a 'disabled blue badge' which entitles me to park in disabled bays. Anyway, as I was approaching the disabled car parking bays there was one bay left and a car pulled into it right in front of me. I didn't' believe the car in front had a disabled badge so I got out and had a conversation with the driver. There were three guys in the car, I have numbered them man 1=driver, man 2=man2, man3=man3

(me) 'Are you dropping off or parking'

(man1)'I'm parking'

(me) 'Do you have a disabled badge'

(man1)'no'

(me) 'Well I do, is it possible for me to have the parking space?'

At this point man1 looked me up and down searching for a visible disability.

(man1)'Is the badge yours???'

(me) 'yes'

(man1)'ok'

Man 1 then moved his car, but his two friends man2 and man3 stared at me while I parked. When I got out my car man2 and man3 were standing there, but started walking away. Man2 then spoke,

(man2) 'you don't look very disabled'

(me) 'I've got cystic fibrosis'

(man3) 'well I hope I don't see you running on the pitch'

Some people can be annoying. Whether or not I had been there to ask for the space, these grown men shouldn't have been taking a disabled car parking space in the first place, it makes their questioning of me and my health even more deplorable. Some people!

Sometimes this is the problem with CF, at first glance there aren't any visible problems. On the outside people with CF can look quite normal and I think people find it hard to comprehend that a young person who looks well can actually be ill. For example, on a bus or train there are seats specially set aside for those who need them. If you see an old person, you can distinguish them by the wrinkles on their face, the grey hair or the smell of pee. Pregnant women we can identify by the massive growth on the front of their body and haemorrhoids , but with CF there aren't visible signs of illness. However, if you saw me doing my physio, having a coughing fit, nebulising or with a tube down my nose you might think there was something wrong, it's just I try and keep those things in the home place.

Recently I have done some stuff in the media regarding CF. This has involved being on TV, radio and in the newspaper. For my radio appearances they try to broadcast my cough, for newspapers they want to see my collection of drugs and for TV they try to broadcast my cough and show my huge array of drugs. It can sometimes make you feel like a performing monkey, but sadly performances are needed so the general public realise that I have CF and that there is a problem with me.

All of this has just made me wonder about labels, ones we have placed upon us and also about labels that we choose to display. It made me wonder, are labels good or bad? We use them when we need them and disregard them when we don't. I don't want to be known as a disease, but at other times I talk about CF and use it so people take notice of what I'm saying. I guess it made me think about the contradictions within everyone and more specifically in me. On the outside I look well, but yet I'm not well. Then there are times I want people to know I'm unwell, but yet I don't want to be different and therefore don't want to be known as 'ill' and neither would I want to be known or defined by CF.

I don't know if what I've said is clear, i just hope you get the gist. Anyway, my brain is starting to get mushy, so I'm gonna stop thinking.

Substantial post?

I may as well get something on the way here, something that isn't so vague as the intro, something more substantial about me. Anways...It's 2pm and I still haven't washed. This isn't a habit of mine, but it's quickly turning into one. I can feel 'the beano' green cartoon lines of stench radiate from my body and it's not a pleasant feeling. Having said that my cat (Amie) is particularly smelly of late, so I don't feel so bad. Everything is comparative and frankly I'm not as smelly as my cat. However, everyone can put up with their own body odours better than they can others and so maybe I'm smellier than I think. That's not to say that ones own personal odours don't occasionally lead to regurgitation,of course they do! I should point out that cats don't have the same kind of luxury when it comes to cleaning products, I have face wash, shower gel, deodorant, toothpaste etc and she just has a tongue. So it really is an unfair comparison, but for the moment it feels like I'm not such a slob.

I've done my physio this morning, so at least that's something. For those who are just dropping by I should quickly alert you to that fact I have a condition called Cystic Fibrosis (CF), you can read about it here: http://cftrust.org.uk Overtime you will see that CF plays a role in my life, ultimately affecting each day, from the everyday logistics of planning a day to helping form the distinct perspective I have on life and the events around me.

So what have we learned from my first 'substantial post'? I have some sort of health condition and that I seem quite keen to talk about body odours and body functions. I think I've managed to sum myself up pretty well. Take care and pop back soon.

It's only the beginning

Hello!

So here it is, a small but momentous moment for the literature world. Here is an opportunity for me to publicly voice my ill judged misgivings and to demonstrate my poor comprehension of the world around me, how could I pass up such an opportunity?

This is also a chance for some to catch up on what I'm doing without having to go through the pain of talking to me face to face. Follow the ups, the downs and the plateaus, from the vaguely interesting to the the not so interesting, it might or might not be here in my blog.

Anyways, thanks for dropping by. I only hope my blog can be as interesting as some others i've read.