Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 Hi, I am Angie I am 56 was a microbiologist until 2 yrs ago, I have recently been diagnosed with ILD, PF and Extrinsic Allergic Alveolitis. I have had a CT scan and tomorrow I have a Bronchoscopy, BAL and lung biopsy at Southampton General Hospital .UK. I will be included in the latest study being done by Dr Kate O'Reilly so 'extra' specimens will be collected tomorrow for this research. I was started on Prednisolone 30 mg last week but it made me a lot worse so after 4 days I was told to stop taking it. I am on nothing at present. I asked about PF rehab and the ILD nurse said I cannot do it until I am a bit better so I am in' limbo'... I was told back in May I had ILD by the GP and I scared myself sill by reading about it on the internet....so:- I have made my will Married my partner of six years I found the PF Yahoo group in UK started by May McEvoystone and joined that and May suggested that I join this group to get more information. I had an African grey parrot called Frodo which my daughter suggested I buy following my husbands death in 2001. He (the Parrot)was a great companion although I didn't realise that he was possibly causing this disease to develope. We also have 6 chickens , but as they are kept outside I am not affected by their dander. I am finding it very difficult to get my head round this diagnosis but was relieved a little to speak to folk who have had it a lot longer than the time scale that I first read about in the articles on the web. I am Angie Timms on Facebook if anyone would like to add me. Please could you put PF in friend request so I don't 'ignore' it. I have a son Ben 31 and a daughter Becky 26 and I will be a Granmother in October when Ben's wife Anne has their first child ... a boy. That is ' me' in a nutshell. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 Hi Angie, I just got back from a vacation and saw no one had responded yet. Since I have the email side turned off and just go to the site to check the happenins' your note would drop from my sight soon. Anyhow welcome. I will keep this short as I have to head back in to work in the morning. My NSIP is related to an autoimmune disease called Adult Onset Stills disease. It also causes my bone marrow to goof off as it is right now. The shot I got 8 days ago does not seem to be helping the anemia this time, but been there before. Hence, the early bed time tonight. Right now the lungs are holding up well and I seem to be lucky in that my disease has only been bothering one organ system at a time. Last PFT showed improvement. What area of microbiology did you work in? Clinical or industrial? My original area of study was Clinical Chemistry. Now am in IT (computing) Clinical Micro was my second favorite area in school. Tom Woloszyn AOSD 2003, NSIP 2008, Asthma 2006, Sjogen's 2008, WKWE (WKWE - " Who Knows What Else " ) > > > Hi, I am Angie > > I am 56 was a microbiologist until 2 yrs ago, I have recently been diagnosed with ILD, PF and Extrinsic Allergic Alveolitis. > > I have had a CT scan and tomorrow I have a Bronchoscopy, BAL and lung biopsy at Southampton General Hospital .UK. I will be included in the latest study being done by Dr Kate O'Reilly so 'extra' specimens will be collected tomorrow for this research. > > I was started on Prednisolone 30 mg last week but it made me a lot worse so after 4 days I was told to stop taking it. I am on nothing at present. I asked about PF rehab and the ILD nurse said I cannot do it until I am a bit better so I am in' limbo'... > > I was told back in May I had ILD by the GP and I scared myself sill by reading about it on the internet....so:- > > I have made my will > Married my partner of six years > > I found the PF Yahoo group in UK started by May McEvoystone and joined that and May suggested that I join this group to get more information. > > I had an African grey parrot called Frodo which my daughter suggested I buy following my husbands death in 2001. He (the Parrot)was a great companion although I didn't realise that he was possibly causing this disease to develope. > > We also have 6 chickens , but as they are kept outside I am not affected by their dander. > > I am finding it very difficult to get my head round this diagnosis but was relieved a little to speak to folk who have had it a lot longer than the time scale that I first read about in the articles on the web. > > I am Angie Timms on Facebook if anyone would like to add me. Please could you put PF in friend request so I don't 'ignore' it. > > I have a son Ben 31 and a daughter Becky 26 and I will be a Granmother in October when Ben's wife Anne has their first child ... a boy. > > That is ' me' in a nutshell. > > Angie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 Angie, Hello from across the pond, glad you found us, sorry you need us.I was a newbie just a few months ago and now I feel like I have a whole new family. Face it this disease sucks, two newbies in one day seems just two to many. Sounds like you are doing everything that you can. You will find much love and support here and you can vent when ever you want cuz we all "get it". Life changing events like this make us realize how wonderful our familys are. I have 3 children and 8 grandchildren from 18 months to 16 years old. They are what I live for, the rest is just gravy. Enjoy this board, it truly is international. We have in Oz (Australia), May's in land I believe, us nuts in the states, a few in Canada, India, I think we're really just missing Eastern Europe, China, and the Arabian penninsula We love ya, hang in there.Dyane Phoenix IPF 02>> > Hi, I am Angie> > I am 56 was a microbiologist until 2 yrs ago, I have recently been diagnosed with ILD, PF and Extrinsic Allergic Alveolitis.> > I have had a CT scan and tomorrow I have a Bronchoscopy, BAL and lung biopsy at Southampton General Hospital .UK. I will be included in the latest study being done by Dr Kate O'Reilly so 'extra' specimens will be collected tomorrow for this research. > > I was started on Prednisolone 30 mg last week but it made me a lot worse so after 4 days I was told to stop taking it. I am on nothing at present. I asked about PF rehab and the ILD nurse said I cannot do it until I am a bit better so I am in' limbo'...> > I was told back in May I had ILD by the GP and I scared myself sill by reading about it on the internet....so:-> > I have made my will> Married my partner of six years> > I found the PF Yahoo group in UK started by May McEvoystone and joined that and May suggested that I join this group to get more information.> > I had an African grey parrot called Frodo which my daughter suggested I buy following my husbands death in 2001. He (the Parrot)was a great companion although I didn't realise that he was possibly causing this disease to develope.> > We also have 6 chickens , but as they are kept outside I am not affected by their dander.> > I am finding it very difficult to get my head round this diagnosis but was relieved a little to speak to folk who have had it a lot longer than the time scale that I first read about in the articles on the web.> > I am Angie Timms on Facebook if anyone would like to add me. Please could you put PF in friend request so I don't 'ignore' it.> > I have a son Ben 31 and a daughter Becky 26 and I will be a Granmother in October when Ben's wife Anne has their first child ... a boy. > > That is ' me' in a nutshell. > > Angie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 > > > > > > Hi, I am Angie > > > > I am 56 was a microbiologist until 2 yrs ago, I have recently been diagnosed with ILD, PF and Extrinsic Allergic Alveolitis. > > > > I have had a CT scan and tomorrow I have a Bronchoscopy, BAL and lung biopsy at Southampton General Hospital .UK. I will be included in the latest study being done by Dr Kate O'Reilly so 'extra' specimens will be collected tomorrow for this research. > > > > I was started on Prednisolone 30 mg last week but it made me a lot worse so after 4 days I was told to stop taking it. I am on nothing at present. I asked about PF rehab and the ILD nurse said I cannot do it until I am a bit better so I am in' limbo'... > > > > I was told back in May I had ILD by the GP and I scared myself sill by reading about it on the internet....so:- > > > > I have made my will > > Married my partner of six years > > > > I found the PF Yahoo group in UK started by May McEvoystone and joined that and May suggested that I join this group to get more information. > > > > I had an African grey parrot called Frodo which my daughter suggested I buy following my husbands death in 2001. He (the Parrot)was a great companion although I didn't realise that he was possibly causing this disease to develope. > > > > We also have 6 chickens , but as they are kept outside I am not affected by their dander. > > > > I am finding it very difficult to get my head round this diagnosis but was relieved a little to speak to folk who have had it a lot longer than the time scale that I first read about in the articles on the web. > > > > I am Angie Timms on Facebook if anyone would like to add me. Please could you put PF in friend request so I don't 'ignore' it. > > > > I have a son Ben 31 and a daughter Becky 26 and I will be a Granmother in October when Ben's wife Anne has their first child ... a boy. > > > > That is ' me' in a nutshell. > > > > Angie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 > > > > > > Hi, I am Angie > > > > I am 56 was a microbiologist until 2 yrs ago, I have recently been > diagnosed with ILD, PF and Extrinsic Allergic Alveolitis. > > > > I have had a CT scan and tomorrow I have a Bronchoscopy, BAL and lung > biopsy at Southampton General Hospital .UK. I will be included in the > latest study being done by Dr Kate O'Reilly so 'extra' specimens will be > collected tomorrow for this research. > > > > I was started on Prednisolone 30 mg last week but it made me a lot > worse so after 4 days I was told to stop taking it. I am on nothing at > present. I asked about PF rehab and the ILD nurse said I cannot do it > until I am a bit better so I am in' limbo'... > > > > I was told back in May I had ILD by the GP and I scared myself sill by > reading about it on the internet....so:- > > > > I have made my will > > Married my partner of six years > > > > I found the PF Yahoo group in UK started by May McEvoystone and joined > that and May suggested that I join this group to get more information. > > > > I had an African grey parrot called Frodo which my daughter suggested > I buy following my husbands death in 2001. He (the Parrot)was a great > companion although I didn't realise that he was possibly causing this > disease to develope. > > > > We also have 6 chickens , but as they are kept outside I am not > affected by their dander. > > > > I am finding it very difficult to get my head round this diagnosis but > was relieved a little to speak to folk who have had it a lot longer than > the time scale that I first read about in the articles on the web. > > > > I am Angie Timms on Facebook if anyone would like to add me. Please > could you put PF in friend request so I don't 'ignore' it. > > > > I have a son Ben 31 and a daughter Becky 26 and I will be a Granmother > in October when Ben's wife Anne has their first child ... a boy. > > > > That is ' me' in a nutshell. > > > > Angie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 Angie,That is the best part.... we all know how reading the first web article after diagnosis almost gave us a heart attack....but ya know I'm 7 1/2 years out and haven't even started my bucket list. LOL Feel better, here's hoping your biopsy recovery is fast and painless.Dyane Phoenix 02 IPF> > >> > >> > > Hi, I am Angie> > >> > > I am 56 was a microbiologist until 2 yrs ago, I have recently been> > diagnosed with ILD, PF and Extrinsic Allergic Alveolitis.> > >> > > I have had a CT scan and tomorrow I have a Bronchoscopy, BAL and lung> > biopsy at Southampton General Hospital .UK. I will be included in the> > latest study being done by Dr Kate O'Reilly so 'extra' specimens will be> > collected tomorrow for this research.> > >> > > I was started on Prednisolone 30 mg last week but it made me a lot> > worse so after 4 days I was told to stop taking it. I am on nothing at> > present. I asked about PF rehab and the ILD nurse said I cannot do it> > until I am a bit better so I am in' limbo'...> > >> > > I was told back in May I had ILD by the GP and I scared myself sill by> > reading about it on the internet....so:-> > >> > > I have made my will> > > Married my partner of six years> > >> > > I found the PF Yahoo group in UK started by May McEvoystone and joined> > that and May suggested that I join this group to get more information.> > >> > > I had an African grey parrot called Frodo which my daughter suggested> > I buy following my husbands death in 2001. He (the Parrot)was a great> > companion although I didn't realise that he was possibly causing this> > disease to develope.> > >> > > We also have 6 chickens , but as they are kept outside I am not> > affected by their dander.> > >> > > I am finding it very difficult to get my head round this diagnosis but> > was relieved a little to speak to folk who have had it a lot longer than> > the time scale that I first read about in the articles on the web.> > >> > > I am Angie Timms on Facebook if anyone would like to add me. Please> > could you put PF in friend request so I don't 'ignore' it.> > >> > > I have a son Ben 31 and a daughter Becky 26 and I will be a Granmother> > in October when Ben's wife Anne has their first child ... a boy.> > >> > > That is ' me' in a nutshell.> > >> > > Angie> > >> >> Quote Link to comment Share on other sites More sharing options...
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