Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 All that stuff at the end helps other people remember my health problemsI have Polymositis found in 12 of 1998, Have Usual Interstitial Pneumontis a form of Pulmonary Fibrosis found by VATS 8 of 2000, On o2 (Oxygen) 24 hours a day 7 days a week at 9 Liters started as of 8 of 2004. have Pulmonary Hypertension as of 3 of 2006 live in Illinois and am 60 years old This automatically put on the bottom of all my posts P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60 From: Godfrey <sngodfrey46@ yahoo.com>Subject: Re:newly diagnosedTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 13, 2009, 12:54 AM Hello Joyce, My name is Godfrey. I live in Anthem, Az. about 85 miles from Prescott. Sorry to hear about your diagnosis, glad you found us and I see that our board members have already given you the best advise you will probably get any where. The oximeter is an absolute must and the web site given is the best place to get it. My insurance paid for mine because the Dr. prescribed it and the medical supply company charged them $200.00 for the exact same one on the web site for $65.00. (one of our members) gave an excellent suggestion about getting checked for allergies. One of the issues and potential causes of Pf could involve Birds and their droppings, we do have 1 member (Teri P.) that lives in Las Vagas who is a bird lover and had to get rid of her birds. I am an animal lover and my best friend is my 10 year old yellow lab (Dakota) who will absolutely be with me until--- well no Doctor is going to come between us ---!!! I was inially diagnosed with PF in June '07 at the Mayo Clinic in sdale Az. After a "wait and see" period and a negative experience with the Mayo people, I went back to a Pulmonologist that I liked and seemed to be on top of my problem from the get go. He actually lives in Anthem about 1 mile from my house, but I have to go into Phoenix to get to his office. He has been very good for me, he explained the VATS biopsy to me, told me the pros & cons, & after talking with my wife who is a RN, I decided to do it, he lined me up with a fantastic surgeon that was so good he almost makes me want to have another surgery just so he can do it again. I had a very good experience with my VATS,----BUT I have had at least 12 surgerys for various thing in my life and I ALWAYS come through with flying colors, so it would be hard for me to give advise about what anyone else should do, because some people don't do well with surgery. I do go up to Prescott once in a while, I like the area and was actually thinking about moving there to a place called Granite Park, its about 3-4 miles south of the airport, but I do love the 100-115 heat---I really seem to breathe alot better and some times I can go a couple days without remembering that I have IPF, so I stayed in Anthem. I'm sure we will get the chance to meet and talk about our life and problems, although I don't consider them problems, its more like opportunities that we have now that never existed before. You are welcome to contact me by my personal Email, or through the board, if you have any questions about the DRs, hospitals, or what ever,--- till then good luck and God Bless G. UIP/IPF 5/07 Az. I Quote Link to comment Share on other sites More sharing options...
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