Monday, March 21, 2011

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/

Monday, March 14, 2011

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!
 
 
 
 
 

Thursday, February 10, 2011

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

Thursday, January 20, 2011

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.