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| This page was last modified on 11 July 2010 10:20 'The Dicky Dasent Snooker Tournament 2010' A fun day which was originally set up by Richard and always raised money for charity - this year we, his family and friends, raised £200 for 'Crackle' the Pulmonary Fibrosis charity - follow the link to find out more about the day, photo's, and the charity........ |  |
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For anyone who is a follower of this site, and for all newcomers too, sadly Dad/Richard (the creator of this site) died on the 18th February 2010. We would like the site to carry on as many have found it useful, humorous, and at times comforting but now it will probably not be updated as much. Dad/Richard was an extremely kind, very warm hearted, and a genuinely larger than life character - we miss him loads but want to try and carry on his good work if possible. He loved the idea of supporting others with this illness and we know that many of the friends he made through different online PF groups are trying to set up other support mechanisms for sufferers of PF. We will add information on this site when we get anything new which maybe of help or interest. From all his family on the 20th March 2010 oooOOOooo
REASON FOR THIS SITE FOR PULMONARY FIBROSIS SUFFERERS OR THOSE WITH   RESPIRATORY PROBLEMS AND THEIR FAMILIES AND FRIENDS - TO DISCUSS AND, HOPEFULLY, ASSIST ONE ANOTHER WITH A LITTLE FUN TOO see bottom of page and it is absolutely uncommercial (I just use Microsoft Office Live as it is easy and good) 
As a sufferer at 68 years, since diagnosed in April 2007 after a collapse, I have been amazed at the apparent rarity of this, albeit increasing, malady and the fact that doctors seem to know little of the real causes or how to handle it. I also notice that, in the UK at least, there seems little personal help for us sufferers so I thought I would open the subject up so that we can talk about it and give each other a bit of support, particularly as anything one reads on the topic seems, largely, very negative in prognosis terms. I had been a very heavy smoker and, surely, they did me no good at all other than being my crutch during a wonderful, but very tough, career in the oil industry. Paradoxically, however, and scant succour, doctors assure me that, whilst they would not have helped, cigarettes have little to do with causing Idiopathic Pulmonary Fibrosis - the real meaning of “Idiopathic” in this case being an unknown cause. It just seems that, for whatever reason, one’s own system suddenly turns on itself and attacks the lungs. Thereafter, one is seemingly “doomed” to a life of steroids, alternatives and anti-biotics with the message, “it will not get better, only worse”! On top of this, many of these IPF sites give a prognosis of 3 to 5 years from diagnosis. Well, I, for one, intend to see that I am at the very top of that average and have a minimum of 10 years in mind. So far the steroids have made me put on too much weight, this coupled with no smoking since April, 2007, and now running at well over 15 stone from a normal weight for years of around 12 stone 10 lbs. This increase is now the weight of our Granddaughter and makes me even more breathless with any sort of effort, even tying shoe laces. However, my lungs have stayed roughly the same and my latest “blow job” tests - forgive me for that - have been stable over the last 3 months. My steroid dose, Prednisolone, has been reduced and my Azathioprine dose increased a bit. The only really regrettable thing is the occasional, but fierce, short periods of anxiety which are a factor in this condition. They occur when one is low and are particularly bad in the dead of night when one's mind starts racing and thinking. However, they can, and must, be overcome. 
My treatment at St. Richard’s Hospital in Chichester under the NHS has been first class and I have “stuck” with them despite having private insurance. The emergency unit, followed by the MAU - medical assessment unit - was superb. The actual ward I was moved to was quite another matter but was only for two days really. I have been treated both carefully and respectfully by Dr. Paul Tate and his team since and I, and my wife Sheila, really appreciate their efforts, not least Marcelle and his views on South African cricket and rugby bearing in mind that my Grand Mother (Castens) was the sister of the SA Rugby Captain in the  1890's and also played cricket for SA too, as Captain, I think. I would also like to mention the great support given by Dr Tim Fooks and the Pulborough Medical Group team, including Bram Stoker's proteges Jenni, Petula and Karen and, latterly, Pippa and Carol!
So, why the site. As I said to begin with, there does not seem to be many places where one can discuss the illness, its effect on oneself, and its effect on those around us, particularly family. I don’t want this to be a miserable, whingeing, site as I believe a sense of humour can be better than all the pills going. Thus, if you have any views, stories, advice, whatever, as long as it’s clean, send me an e-mail and I’ll try to include on the site as we go along.
MOST IMORTANT FOR SUFFERERS, I AM NOW OVER 2 YEARS INTO THIS AND, DESPITE SEVERAL FRUSTRATIONS, AM WELL AND TRULY STILL CRACKING ON SO BE POSITIVE. DO LOOK AT THE MEDICAL OBSERVATIONS PAGE
AS IT MAY HELP SUFFERERS TO RELATE OR COMPARE I would, actually, like to get this site more widely seen on the Web as I hope it may help people and is not intended to be commercial in any way. However, getting any large search engine to recognise it seems like a minefield in reality. If any one has any good advice on this, please let me know.
A FRIEND, LAST YEAR, THOUGHT THERE WAS ONLY ONE PAGE TO THIS AND "FOUND IT RATHER DEPRESSING". A THOUGHT FOR ME, I THINK; MIND YOU, SHE ADMITS TO BEING A BIT THICK WHERE COMPUTERS AND THE NET ARE CONCERNED. NONETHELESS, I HAD TO POINT OUT THAT THERE ARE SEVERAL OTHER PAGES, MOST HOPEFULLY SLIGHTLY AMUSING,WHICH ARE THE MAIN REASON FOR DOING THE SITE, WHICH IS NOT, IN ANY WAY, MEANT TO BE DEPRESSING!! IT IS DESIGNED TO CHEER IPF SUFFERERS UP! THE MENU PAGES ARE IN ORANGE AT THE TOP LEFT OF THIS PAGE AND THERE ARE SEVERAL "OBSERVATIONS ON LIFE " PAGES FOR CLARITY, AND TO AVOID MY 4 FANS HAVING TO PLOUGH THROUGH THIS STUFF OVER AND OVER AGAIN, THE LATEST "LIFE OBSERVATIONS" WILL ALWAYS BE ON THE LAST LIFE OBSERVATION PAGE, NOT THE FIRST. I AM WORKING ON A BETTER APPROACH, PERHAPS, AND WILL ADVISE.
LIFE OBSERVATIONS 7 has just started for the boys & girls in Afghanistan and their families oooOOOooo STOP - THIS IS NOT A MISERABLE SITE MISERABLE SITE? THE REVERSE IN FACT!
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