Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hello Aidan, Welcome to the group. This is a very caring and lovng group. We vent, we cry, and we laugh together as we go down the road to learning about this monster we have.We would apppreciate any information you can give to us, and we will willing give anything we know to you. Again WELCOME and make yourself at home. HP 6/06bardickwest wrote: Hello folks, I put 'Pulmonary Fibrosis,' into the search engine, and one of the results I came up with was this site. My name is Aidan, 65 Yrs and living in the UK. I was first diagnosed with IPF six or seven years ago. To cut a very long story short, it has really only been over the past eighteen months that that it has got really disableing. I attend the respiratory clinic at my local hospital each four months for tests and monitoring. My current treatment is 20 mg Prednisolone daily, a combivent inhaler, and I have recently started using supplementary oxygen when needed. I had hoped to come up with a UK support group but haven't come up with one yet. I am positive about my condition, choosing to concentrate not on what I can no longer do, but rather on what I can. This is a first attempt to be in touch with others in a similar position. Aidan. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hi Aidan, what a cute name! i love it! i'm jaime, 30 yrs young on 30 mg daily of prednisone, also the combivent inhaler and the actimmune injections. diagnosed 10-05 with PF secondary to eosinophilic granuloma, houston texas usa. we may not be from the UK but we are a pretty dandy group...welcome aboard. sorry we have had to meet under these circumstances. > > > [] Hello folks, I put 'Pulmonary Fibrosis,' into the search engine, > and one of the results I came up with was this site. > > My name is Aidan, 65 Yrs and living in the UK. I was first diagnosed > with IPF six or seven years ago. To cut a very long story short, it has > really only been over the past eighteen months that that it has got > really disableing. I attend the respiratory clinic at my local hospital > each four months for tests and monitoring. My current treatment is 20 > mg Prednisolone daily, a combivent inhaler, and I have recently started > using supplementary oxygen when needed. I had hoped to come up with a > UK support group but haven't come up with one yet. I am positive about > my condition, choosing to concentrate not on what I can no longer do, > but rather on what I can. This is a first attempt to be in touch with > others in a similar position. > > Aidan. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hey Aiden, Welcome to our group. How nice to hear from you all the way from UK. what part of the country do you live? I am also on a support group for Bronchiectasis. Most people on the group are from the UK. Your medical system is so different from ours. The specialist is called a consultant. >> > [] Hello folks, I put 'Pulmonary Fibrosis,' into the search engine,> and one of the results I came up with was this site.> > My name is Aidan, 65 Yrs and living in the UK. I was first diagnosed> with IPF six or seven years ago. To cut a very long story short, it has> really only been over the past eighteen months that that it has got> really disableing. I attend the respiratory clinic at my local hospital> each four months for tests and monitoring. My current treatment is 20> mg Prednisolone daily, a combivent inhaler, and I have recently started> using supplementary oxygen when needed. I had hoped to come up with a> UK support group but haven't come up with one yet. I am positive about> my condition, choosing to concentrate not on what I can no longer do,> but rather on what I can. This is a first attempt to be in touch with> others in a similar position.> > Aidan.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Joyce writes: > > Hey Aiden, (Aidan) > > Welcome to our group. HI. Home for me is a little seaside resort, Weston-super-Mare, Somerset, in the southwest of England. If you look on a map you will find it on the Severn estuary, just across from Cardiff, and 21 miles south of Bristol. The thing I like most about it is that I am in short driving distance of both Devon and Cornwall. Two parts of England that are still wild. Anything else you need to know, just ask. Aidan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Joyce is it me or what?? this is all of this message. I know it is not complete because there are no hugs.. Peggy 09/04 ipf Hey Aiden, Welcome to our group. How nice to hear from you all the way from UK. what part of the country do you live? I am also on a support group for Bronchiectasis. Most people on the group are from the UK. Your medical system is so different from ours. The specialist is called a consultant. > > > [] Hello folks, I put 'Pulmonary Fibrosis,' into the search engine, > and one of the results I came up with was this site. > > My name is Aidan, 65 Yrs and living in the UK. I was first diagnosed > with IPF six or seven years ago. To cut a very long story short, it has > really only been over the past eighteen months that that it has got > really disableing. I attend the respiratory clinic at my local hospital > each four months for tests and monitorin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Aiden, Is Pulmanary Fibrosis common in England? I know a few of the members on Bronch have Fibrosis also. Bronchiectasis gets more press in England. Here in the states, it seems to be misdiagnosed more often than not. Do you see a consultant? Is your primary illness the PF or do you have some other disease that has contributed to it? So glad that you are with us. Joyce PF 1997>> Joyce writes: > > > > > Hey Aiden, (Aidan) > > > > Welcome to our group. > > > HI. Home for me is a little seaside resort, Weston-super-Mare, Somerset, in > the southwest of England. If you look on a map you will find it on the > Severn estuary, just across from Cardiff, and 21 miles south of Bristol.> The thing I like most about it is that I am in short driving distance of > both Devon and Cornwall. Two parts of England that are still wild.> Anything else you need to know, just ask.> Aidan.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Peggy, How bizarre. I know for a fact that I finsihed this one! There are forces out there making me doubt my sanity. Hugs, Joyce PF 1997> >> > > > [] Hello folks, I put 'Pulmonary Fibrosis,' into the search engine,> > and one of the results I came up with was this site.> > > > My name is Aidan, 65 Yrs and living in the UK. I was first diagnosed> > with IPF six or seven years ago. To cut a very long story short, it has> > really only been over the past eighteen months that that it has got> > really disableing. I attend the respiratory clinic at my local hospital> > each four months for tests and monitorin> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Joyce writes: > > Aiden, > > Is Pulmanary Fibrosis common in England? I know a few of the members on > Bronch have Fibrosis also. Bronchiectasis gets more press in England. > Here in the states, it seems to be misdiagnosed more often than not. Do > you see a consultant? Is your primary illness the PF or do you have > some other disease that has contributed to it? So glad that you are > with us. Hi Joyce and all, PF common in England? The short answer to that is, I dont know. It's something to look up. Bronchiectasis? Ditto. Primary illness PF? Yes, that is all I have. I have heard Chronic Alveolitis and dry persistant cough mentioned, but to me, they are part and parcel of the same thing. On one of the pages I was looking up I saw 'Cryptogenic Fibrosing Alveolitis' referred to in the same breath as IPF. Do the medics have two terms for the same thing> I dunno. I have seen azathioprine mentioned in a few posts. My experience of that particular drug was not a happy one. The consultant (yes, that's what they are called here) wanted to try an alternative to long term Prednisolone (that is spelt differently here) use. One of the side effects of Prednisolone for me was accelleration of cataracts in both eyes. One has been removed and I am on the list for the other one to be done soon. The Azathioprine made me feel very ill, and blood tests showed that liver and kidney enzymes, and white blood cell count went off the scale. I think that has covered all points, so I will sign off. Off subject, do you realise how difficult it is to type with a kitten all over the keyboard? Luv 'n Huggzz Aidan. Quote Link to comment Share on other sites More sharing options...
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