Monday, 5 May 2014

World Pulmonary Hypertension Day

Yes it is that time of year again when PH sufferers, friends and relatives try to raise awareness for this horrible illness. So, I hear you ask, where are the newspapers ads and articles? Where are the TV appeals and programmes? Well PH is very much a Cinderella of the terminal illnesses simply because it is so rare. Only 4000 people, approximately, have been diagnosed with it in the UK and world wide the number is in the tens of thousands not hundreds of thousands or even millions. One in three of us will be touched by cancer at some point in our lives. Everyone knows someone who has died from heart related illness. MND, MS, Parkinsons, Alzheimer's are all well known and well publicised conditions. Even if you don't know what they are at least you have heard of them. 

PH is very different. The chances are you've only heard of it because you are, or know someone, suffering from it. For the media it is not something they can really get a story out of or get too worked up about. There are so few people who would be interested in the subject that really there is little point. However there is a point and a very big one. If diagnosed early you have a much, much better chance of living a relatively normal life for years to come. In that time new drugs will be developed and one day, hopefully, a cure.

So if you, or someone close to you, have suddenly developed asthma which is only getting worse and not responding to treatment see your doctor and mention the possibility. Only an expert can diagnose properly so don't get fobbed off, insist on a referral, it might just save your life. It took ten years for me to finally be diagnosed, and then it was by chance. By then the damage was done. Early diagnoses is the single most important weapon in the fight against PH. For more information on the symptoms and treatment of PH visit
http://www.phassociation.uk.com/  Link is also permanently displayed on the sidebar of this blog.


Yesterday I more or less succeeded in having a really lazy day.

The only real fly in the ointment was that I've chosen Sunday for my weekly drug prep. I've chosen Sunday as it is the one day in the week that we never go out in the evening. We deliberately keep it free so I can get myself together and have an early night before work on Monday.

So I went upstairs, turned on the TV and tuned in to Pointless Celebrities, was there ever a more apt name for a show, and started to lay out everything I was going to need. The first thing I discovered was that I needed more room, a lot more room, so the sharps bin ended up on the floor beside my chair and everything else had to be pushed further aside. It took me a full fifteen minutes to unwrap everything and then I got started. With Flolan the whole process, including unwrapping, took around forty minutes. I was all done and dusted within an hour. Now I know seventy five minutes sounds like a really long time to be messing about with medication, and yes it was quite boring, and yes my hands did get very sweaty in the sterile gloves but that didn't matter. It means that tonight it will take me all of five minutes, if that, to change over my cassette. On a day like today it means I can spend my late afternoon/early evening sitting on the decking with a book and a drink instead of sweating it out in a hot bedroom. I am so grateful I could cry. Now if only I can get rid of the Sunday marathon as well, that would be perfect.


Today I'm venturing out into the garden for the first time this year, other than my quick walk around, to enjoy a relaxing sit and think. No doubt at some point the air will be invaded by the stink of barbecues but until then I'm going to enjoy the scent of next door's lilac bush and my honeysuckle. Peter is busy getting things ready and has warned that it is still a bit nippy out there at the moment so I'll wait until after lunch before attempting any outdoor reading. So this morning it is mundane tasks like ironing my uniform ready for tomorrow and putting flea treatment on Smirnoff, yes it is that time of year again. At least I haven't had any little presents dropped at my feet but as he is sixteen this week maybe hunting is a bit beyond him now.

Better get on, next blog Friday.