Ready... or not?

So, I'm sitting at home in the afternoon having coffee with my friend, when the phone rings. I answer, and the nice lady says "Hello, I'm one of the doctors, phoning from the Freemans Hospital in Newcastle." There was a momentary pause before she quickly added "..but I'm not phoning about new lungs." At this point I exhaled slowly, gathered my thoughts and answered "oh well at least I can calm down now". There was probably only 3 seconds between her introduction and the affirmation that this was not a call for my transplant, but somehow a million different thoughts had managed to race through my head. More important than the thoughts however, is how I felt. A mixture of fear and excitement, followed by a sense of disappointment when I realised the call was not 'the one'. This is good. This means I am ready for the call, I am willing to take a leap into the unknown and a step towards my future.

This may seem like a strange thing to say, as you would assume I was ready for the call as soon as I went onto the list and that I have spent each day waiting and hoping, and looking at the phone expectantly. I haven't. I have instead spent a great deal of time trying to come to terms with being on the list, with being 'sick enough' to need a transplant and becoming comfortable with the decision I have made. People probably think there would be little to think about - surely you either need a transplant or not? Well, its just not that simple. Its all about the timing of going on the list; the risk of going on too early versus the one of leaving things too late. Due to a chronic shortage of donors, there is always a wait before suitable organs become available, which means the call could come in months, or it could be years. An average wait for lungs is probably around 18 months. They then have to take into account your blood group and height, and how easy this will be to match. For example, I have the commonest blood group so there are more people in my 'group', making the wait longer. Taking all this into account a decision about listing for transplant has to be made based on how you are just now, but more importantly, how much your health is likely to decline over the next 2 years.

There in lies the problem. If it was solely based on how I am just now, would I really take the risk of undergoing major surgery and the possible post operative complications? Unfortunately transplants are not a cure, nor are they fool proof and there always remains a risk that you simply swap one set of problems for another. Despite this however, life expectancy after transplant is ever improving, and the latest statistics for Newcastle suggest around a 50% ten year survival. Hopefully in the not so distant future there will be some statistics for 20 year ( or more) survival. With any luck I will prove to be one of them.

So, with that in mind if I ask myself again: based on how I am just now, am I ready to take the risk of transplant? Yes. Yes, because my fear of not being called is far greater than the fear of being called. The only certainty of not having a transplant is that I will deteriorate - it may be very slow, it may be sudden, but it will happen. With a transplant there are no certainties, but there is hope; hope for a new beginning and ultimately a longer, happier and healthier life. I think that hope is worth taking a risk for.

MOT

I had my annual review this week, or "MOT" as its sometimes called by the CF team (oh, how witty). If I was a car, I guess I would have been declared unroadworthy and towed to the scrapyard. Thankfully I am not a car. Actually overall things were not too bad, and I have stayed reasonably stable over the past year, albeit at a lower level than before, but by no means on a slippery slope. It was a long afternoon, starting with exercise tests consisting of a 6 minute walk and a 3 minute step test. The 6 minute walk is basically 2 cones set out in the corridor, and you have to walk back and forth between them for 6 minutes trying to cover as much distance as possible, whilst having oxygen levels and pulse monitored. I did manage to finish it, although found it much harder than last year, and my oxygen levels dipped more than previously. The step test is simply that - stepping up and down for 3 minutes. I only managed 1 minute, but that's not a huge difference to before, since the step test is much harder than the walk test. I then had full lung function tests, which take about 1 hour in total and are incredibly boring and surprisingly tiring. My lung function was 0.69L, which calculates at about 23% of normal. I had hoped for a little more having just finished IV antibiotics last week, however in fairness it appears to have been stable around this level for about 6 months and was only a few percent higher last year. Stable is good. On a much more positive note however, my weight has gone up a kilo courtesy of M+S, tesco carrot cake and banana nesquick. Did you know that a tiny (and I mean tiny) slice of carrot cake has 210 calories? Winner.

So, overall the doctor was happy with my current level, and I just have to continue as I am doing and stay as well as possible for the transplant. The only new thing I have to try is using oxygen when exercising with the physiotherapist at the hospital, as it will hopefully allow me to exercise for longer and thus gain more benefit on a fitness level. There is no need for me to use oxygen at home, as sitting at rest my levels are reasonably good, and I can wander about the house at my own pace. There could be an argument for using oxygen when walking about, but on balance the energy exerted carting the cylinders about (which are not very portable) would outweigh any benefits at the moment. I am more than happy with this assessment, as oxygen use would have a huge impact on my daily life, and if I can avoid this, then all the better.

Now that I have bored everyone with the intricate details of my clinic review, I will bore you further with a Seb anecdote.

Seb: "The moody dog"

I am trying to watch TV (something quality like Richard and Judy I believe). Seb is annoying me by bringing various toys over and shaking them at me, squeaking them at me, and generally trying to entice me into play. After 5 minutes I give in, and start wrestling a large squeaky cow from him. The play continues for about 3 minutes, when suddenly Seb drops the toy, sits on the floor and stares at me with a furrowed brow. I shake the toy, I squeak the toy, I bop him on the head with the toy. He does not even blink. Clearly I have done something radically out with the rules of the game but I am not sure what, as only Seb knows what the rules of the game are. He continues to stare for several more minutes, before I intervene and ask for 'a paw' hoping to lighten the mood. He now stares straight past me, and becomes suddenly deaf. I ask again. I ask for a third time, and as well as being deaf, he now becomes intently interested in his back paw. I ask for a fourth time, in a loud commanding voice. He continues to stare past me, and lifts the paw about 2cm from the carpet, whilst sighing loudly. I kid you not. I'm not sure that this is normal dog behaviour?

Let there be light!




Well I am nearing the end of my IV antibiotic course now and am thankfully feeling much better. I even managed a 20 minute walk with Seb yesterday. It was only meant to be 10 minutes (I now time 5 minutes walking, then turn back as otherwise I keep walking until I'm exhausted and then realise I still have to get home). Anyway, around the 4 minute mark this lady was passing me and paused to ask questions about Seb (what kind of dog? How old? What's his name?). She then slowed down and started walking with me in order to continue her conversation, which involved a rather in depth description of her nephews dog allergies. I thought it would look really rude if I suddenly said "Actually I was just about to turn round and walk back the way I have just come, so can't really talk to you right now". So I just kept walking. I was beginning to think I would be walking to the next town at this rate, but thankfully after about 5 minutes Seb became intently interested in a lamppost, giving me an excuse to lag behind. The lady got bored waiting and moved on, and I quickly scurried across the road before she thought of another question. I was very tired when I got home, but was pleased I had managed to walk further than expected and reassured that the IV's have done the trick.

Today we went to B+Q to look for new lampshades. There isn't really anything wrong with the ones we have, other than the fact that with those energy efficient light bulbs you can't see hee-haw. Even if you leave the bulbs to 'warm up' for 5 minutes (by which time you have forgotten what you came into the room for anyway) there is little more than an eery glow. I have been complaining about the lack of illumination in my life for months, and although I know it's not environmentally friendly, I did even ask Andrew to put some normal bulbs back in. Being in his 'green phase' he was horrified by this request, and instead removed the lampshades from the bedrooms. I agree that this was effective, but it did give the rooms a rather unfinished look, and the impression we were either moving out or had just moved in. So, we needed to find light shades that weren't ..err..so shaded. After wandering up and down the aisle in B+Q for 15 minutes debating the 'see through-ness' of several light shades, we settled on ones that were kind of wire effect balls so you could actually see the bulb. What we didn't consider was the fact that the energy efficient light bulbs are both large, and ugly, so being able to see them wouldn't be that desirable. So on spending a not insignificant sum on two new light shades and energy efficient bulbs, we both looked at them for a few minutes, before Andrew turns and says "Ah well, maybe we could just put normal bulbs in them and they would look ok." You have to love the man's logic.

A totally random observation I just have to share from this week involves warnings on packaging. The first one I came across was while studying my shampoo bottle in the bath (I get easily bored). I was amused to read under the list of ingredients, in bold: "WARNING, THIS IS NOT FOOD." Now, I understand the words "wheat grass and kiwi" may be confusing to some, but generally the words "shampoo" and "apply to hair" would resolve any doubt as to the edibility of the product. More amusingly, you just know that this warning probably comes from a law suit at some point, where someone, somewhere has used it as a salad dressing or the likes.

The most bizarre packaging information however was on a takeaway pizza box, where in capital letters is assured me that "We guarantee that this product contains no genetically modified organisms."

Dictionary definition of organism; a form of life considered as an entity; an animal, plant, fungus, protistan, or moneran.

Now, I could either take this to mean that "There may be living things in your pizza, but no need to worry because they aren't genetically modified." Alternatively it could mean "Don't worry, there are no genetically modified living things in your pizza, just dead ones." Ah well either way, thats ok then. I feel so much better knowing that.