Variety is the Spice of Life




I should really have known that by mentioning the words "IV free" in my last blog, that I would be tempting fate. In response, my chest decided to flare up the day after I made this bold statement and I am now back on IV antibiotics. I think the sinus infection was probably the culprit, but at least the facial pain from that has eased a little this week, and I'm sure the IV's will help clear it up further. I am therefore just trying to take things easy, do lots of physio and make sure I remember to eat. I had another little 'talk' from the doctor about my weight. I actually haven't lost any, I just have stopped putting it back on. She feels that I have not really pulled out of this frequent infection cycle, and that some extra weight may well be the way forward. One of the reasons for needing this transplant is the frequency of my infections, but the irony is that I actually need to be infection free at the time of the transplant, so the need to lengthen these windows of opportunity is utmost.

I know, to most people, it will seem completely alien to struggle with weight gain, as opposed to weight loss but the two are actually remarkably similar. Both focus on food; monitoring the kind of food you eat, when you eat it and ultimately how many calories are consumed in a day. Regardless of the intended end goal, the process is similar, and at the end of the day, it is tiresome, unnatural and turns eating into a daily chore instead of an enjoyment. In CF, the required calorie intake is much higher than normal yet this is set on the background of food not being absorbed efficiently due to enzyme deficiencies, trying to keep blood sugars stable in CF related diabetes, and active infections leading to nausea and appetite loss. This imbalance, unsurprisingly, can lead to a constant battle of wills. I manage to offset this imbalance with overnight feeds, which provide me with an additional 1500 calories a day. Although it may be hard to believe, I do actually eat three main meals during the day, although I admit that portion size is on the small side. In addition, there are many supplemental drinks, powders and potions (I believe I have tried them all over the years) that can be added to foods, or taken on their own. Some of them are more bearable, especially the milkshake style drinks, so you would think it would be easy to just have one or two of these supplements a day and be done with it. However, I could maybe liken this to the Slimfat diet or similar - I am sure in the first week of such a diet, you think "hey this is great, these shakes actually don't taste too bad. I can manage one of these a day", but after a few weeks pass you really couldn't face even looking at one, never mind drinking it. In any diet, motivation soon starts to wane and in true Scottish terms "you just take a scunner." Based on this observation my new weight gain plan is going to be based on real food, but in edible portions and of varying types, because if eating can be made somewhat less of a chore, I can perhaps start moving in the right direction. A little of what you fancy is never a bad thing, so I suspect a trip to the local M+S food store may be a productive first step, where they have lots of mini deserts you can just eat from the pots, and those big tubs of mini bite treats in every variety. After all, they do say that variety is the spice of life.

To end on a completely random note, I have added this video of Seb from my mobile phone. This was taken to illustrate the fact Seb cannot actually be seen in the garden when it has been snowing, which I guess is testimony to his Tibetan roots. On calling him it seems that he has not responded, until this little dot just appears from nowhere and flies into the house. I am not sure why I find it so amusing, but I do. Simple things eh.

Shake those Giant Electric Bootees





I haven't really blogged any health updates for a while, although you can generally assume this is a good sign. I have been IV antibiotic free for 5 weeks, and oral antibiotic free for 3 weeks. Weight, lung function and oxygen levels are all much the same as before Christmas. I don't expect much shift on the latter two, and am happy just for 'stable' but would still like some increase in my weight. My appetite has taken a tumble in the past two weeks, largely due to flair up of sinusitis which, as well as causing intense facial pain and pressure, has the unfortunate side effect of removing my ability to taste. Sinus problems are common in CF, and I've lost count of the number of times I have had surgery to try and alleviate chronic symptoms. The benefits are usually fairly short lived, but sometimes its just gets to that stage where you can't take any more. At the moment I feel I have tried everything - daily saline nasal washes (by the way, this is an ENT recommended practice, not some voodoo thing I picked up on the internet), steroid nasal sprays, decongestant tablets, painkillers of every variety known to man, cold compresses, hot compresses, massaging my face, massaging my head, steam inhalations. I even bought some herbal remedy which tastes disgusting, so logically must be doing something good. Is that not how these things work?! The frustrating thing is that I know even if surgery would help, I would not be considered fit enough for a general anaesthetic, for what is ultimately non-essential procedure. I'm not sure whether this surgery can be done under local anaesthetic but I would be willing to try anything at this stage. Now I have got that off my chest, I'm sure this will just be an acute flair up, things will return to their grumbling baseline soon, and all will be forgotten by my next blog entry.

On an entirely different, and less woeful note, I was at one of those fancy spa's last week. I had gift vouchers to spend, and being unsure what treatments would be suitable, I had booked a 2 hour slot where the therapist decides on treatments best suited to your needs. Apparently I needed my feet encased in paraffin wax and my face required 20 products to be applied in quick succession. You learn something new everyday. The foot therapy started with a 'foot spa' which was essentially a fancy way of saying they needed to dunk your feet in some warm water to make sure they were clean before anyone touched them. Fair enough I say. After this I had to relax on the couch while the therapist did unmentionable things to my feet. I suspect one of these was to remove my cuticles, but it did in fact feel more akin to having surgery for an ingrown toenail. As I was lying there in the darkened room with my eyes closed, listening to whale music and wincing in pain, I did consider why it is socially acceptable for someone to inflict pain on you just because it is under the guise of a 'treatment' or 'therapy'. I believe a form of Japanese torture is to insert bamboo sticks under the nails. Are you seeing any similarities here?

After the initial pain, the process moved in an entirely surprising direction. Having buffed, polished and filed my toenails to perfection, she then encased my feet in paraffin wax, wrapped them in (what felt like) plastic bags and then popped my feet into giant, plastic, electric heated slippers. She then left me, plugged into the wall socket, for 10 minutes. I was momentarily concerned about the fact I was plugged in, but thinking back to science class, I don't think paraffin wax conducts electricity. Having reassured myself that I was not about to be electrocuted, I then took a fit of the giggles at the absurdity of my position (fortunately therapist was out of the room during this outburst). People everywhere in the world are going about their daily business, commuting to work, earning money to pay the next bill and generally worrying about life's stresses.... and there I am lying in a darkened room in my pants, draped in a towel and sporting the worlds largest electric booties. What is the world coming to?

The facial component was somewhat less bizarre, although I am not entirely sure if all the products applied to my face (and then washed off, I might add) were strictly necessary. I was also slightly worried about coughing in the therapists face, as she had wrapped me up like a mummy in the towels, so I couldn't even lift my hand to cover my mouth. I therefore attempted to cough with my mouth closed. This is a fascinating and very useful skill, which I hope to develop. The facial then ended with a wonderful neck, shoulder and head massage, which I would gladly experienced for the entire 2 hours. However I suppose if that had happened, I would then have missed all that earlier fun with the torture and the bootees. We couldn't have that, could we.

Karaoke Queen




Well tomorrow will be the start of week 2 back at work. Relatively speaking, the first week back wasn't too bad, but I did quickly notice that on the three mornings I went to work I felt quite unwell in the afternoon, and became incapable of moving from the sofa for the rest of the afternoon. I think this was even more noticeable after two weeks break, where I had felt reasonably well most of the time, and could just take everything at my own pace. I am not sure what this means for my future work plans yet; after all it could just be the normal 'first week back to work syndrome' that everyone experiences after a holiday, not to mention the fact the weather is so depressingly wet and miserable at the moment. January blues indeed. On the upside, I am changing placement in 3 weeks time and my new work place will only be about 15 minutes drive away, and since I've worked there before I already know all the staff, so I wont have to explain about CF and the transplant situation all over again. I am looking forward to the change, and am hoping it will be more suited to my health situation and, with any luck, I may even find it a little less tiring.

Due to the weather situation, myself and Andrew barely ventured out of the house this weekend. Even Seb didn't seem that keen to go outside, and being the strange dog that he is, he normally finds the rain and wind 'invigorating'. Lucky him. Anyhow, we managed to whittle away several hours on both Saturday and Sunday playing on the Singstar game I got for Christmas. To anyone who hasn't seen it before, it is essentially an elaborate karaoke game where you are given scores at the end of a song based on your performance. In a previous post, I believe Nicola did leave a comment warning me not to listen to the 'playback' mode. I should have taken heed. Having scored a 'Rising star' on my Tiffany performance (it is clear I grew up in the 80's) I decided to listen to the recording on playback. Oh my God. Bad, awful, tone deaf and utterly painful are words that barely capture the essence of my performance. I was so bemused by the fact I seemed to have been gaining points for all my correct notes with little comments like "cool" and "great" popping up on the screen. I then realised this was perhaps due to the fact we were playing it on easy mode where you are awarded points not for hitting the right note, but for being somewhere in the ballpark. On trying a song on the difficult mode, it became clear I was barely in the ballpark, never mind scoring any goals. The little "cools" were replaced with "awful" and "bad" on every line I sang. It became increasingly obvious that when Seb had been intently pawing my arm earlier in the game, he was not, as I had believed, 'attention seeking' but was probably just begging me to stop. However, I will not be defeated. They say practice makes perfect so I'm sure in another...err...year or two, I will have made some progress. In the meantime I will revert to playing it on the easy mode, where being in the ballpark is rewarded. Ignorance is, indeed, bliss.

On a less frivolous note, my friend Emily is still in ITU after receiving her transplant 10 days ago. Due to the development of some problems, she had to be put back onto the ventilator last Thursday and, from her blog, I gather all the doctors can say at the moment is that "she is not out of the woods". She has come through many rocky times in the past 2 years while waiting on her transplant, so I have every faith she can pull through this and make a full recovery. Something my mum always says is "Where there is life, there is hope" and I truly hope that Emily's new life is just about to begin.

It's back to old clothes and porridge

For those non-Scottish readers, the above should be pronounced something like "It's back tae auld clathes and parridge". It makes so much more sense in a Scottish accent. Honest. Anyway, what I mean is that the festivity is now well and truly over and this week I've been thrown back into the reality of life. Work, food shopping, cooking, trying to nurse back plants that have not been watered for 2 weeks, going to bed at a normal time, and getting up at an abnormal time. I am seriously considering moving back home to my parents permanently. Life was so much easier there.

There has been some ongoing celebration however, as a good friend of mine who I met via the CF trust forum a couple of years ago, has finally received her double lung transplant after waiting almost 2 years on the list. I have been avidly watching her blog for updates and so far all seems to be going well and she came off the ventilator yesterday, which is a massive step forwards. The next stage will be require a lot of hard work, as she will have to build up her physical strength in order to use those new lungs to their full potential, as well as simply trying to recover from such major surgery. I will be hoping and praying for her to make a full and speedy recovery over the coming months.

Having someone I know well actually go through this life changing operation is a strange feeling. It makes it somehow seem more real than before. My only past experience of life waiting for transplant was with my sister Frances Ann, who waited 2 1/2 years, but still never got that call. I think as a result of this I sometimes do not believe I will ever get called, or that the whole experience is even real. In a way this is partly a self protective response, where I do not want to think about my situation or consider the possible outcomes, but it is also partly due to a real belief that the call may not come. I do not mean this in pessimistic glass is half empty way, but only in a realistic, what are the odds calculation.

However, what I have realised in the past days is that the odds are the same for everyone. There are only two options, therefore I am just as likely to be called as not to be. Seeing a friend receive that call just goes to show me that it does happen and it could happen. Anytime. On that basis I have been a little more alert and a little less blasé. I even checked my "Newcastle suitcase" (you have to have a bag packed ready to go) to make sure I had in fact put sensible things in it, having not looked at it since I was listed 6 months ago. The friend I was talking about once told me that when she re-checked her bag, she found that in the stress of being listed, she has packed something along the lines of 5 pairs of pants and a poncho. That would have been a good look post-op! Luckily I found I had packed clothing items for both halves of my body, which was a relief to say the least.

Health and Happiness for 2007

I would just like to wish everyone a very Happy New Year!

Traditionally this is a time to look back over the past year; to lay your life out before you and examine the ups and downs, the good and the bad, and to wonder how you can carry forward only the positives and create a new year filled with opportunity and adventure. However, looking back on last year I don't think I can separate the good from the bad. 2006 was a year where I was forced to make many adjustments in my life: to adapt to declining health; to learn that work does not define me; to relinquish some of my independence and accept help from others; to be placed on the transplant list and learn to live with both the fear of being called, and the fear of never being called.

I suppose written in black and white, my list of memories for 2006 could appear to be memories of sad and stressful times. Yes, like everyone else I have had my own share of sadness, my own share of stress, but equally I have had more than a generous share of happiness, laughter and pure unadulterated silliness. Adjusting to life on the transplant list has been both the lowest and the highest point of the year. This dichotomy arises from the simultaneous fear that the transplant will not be successful or that it could bring a whole new set of problems, set against the glittering hope that it will be a gift that is truly life changing.

I will not look look back on 2006 as a year to be forgotten, or one I need to put in the past. I will instead carry forward what I have learnt, and my resolution will be to continue to learn, to adapt and to enjoy my life as it is. Should this be the year where I get that 'call' then so be it, but if it is not I am sure I will still be much richer in experience, much wiser in mind and hopefully just as healthy in spirit by next New Year. So, here's to Health and Happiness for 2007!