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!