Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Hi , Glad to meet another zoner here. Just want to let you know I will send another longer reply later. I have a babysitting assignment with 3 of my grandchildren in an hour. Sounds like we have alot to tt about. TT you soon Hi Dyane, My name is G. and I live in Anthem, Arizona. I was finally dx with IPF in May '07, after being mis-diagonised for two years. I would like to know more about your DRs and about the St. ph Hospital Transplant program. How long have you been going to St. Joe's and do you live in Phoenix? Yes it will be 85 this weekend and I will love it even better when it gets up to 100 and stays there, the warmer it gets the better my breathing is---so I love the heat. You will love this board, it is a very loving, caring and knowledgeable group of " angels " that will give all the support that is possible, both spiritually and emotionally. Welcome aboard and glad you found us. G. UIP/IPF 5/07 AZ. -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Hi , Glad to meet another zoner here. Just want to let you know I will send another longer reply later. I have a babysitting assignment with 3 of my grandchildren in an hour. Sounds like we have alot to tt about. TT you soon Hi Dyane, My name is G. and I live in Anthem, Arizona. I was finally dx with IPF in May '07, after being mis-diagonised for two years. I would like to know more about your DRs and about the St. ph Hospital Transplant program. How long have you been going to St. Joe's and do you live in Phoenix? Yes it will be 85 this weekend and I will love it even better when it gets up to 100 and stays there, the warmer it gets the better my breathing is---so I love the heat. You will love this board, it is a very loving, caring and knowledgeable group of " angels " that will give all the support that is possible, both spiritually and emotionally. Welcome aboard and glad you found us. G. UIP/IPF 5/07 AZ. -- Dyane L. BillingsSenior Staff AccountantBall & McGraw P.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Hi , Back from my middle daughter and her family live there. Where to begin, short history, have had sore joints, sore muscels, bad lungs, allergies my whole life, always low key enough that I just " lived " with it. Really begain 7 years ago, my 2nd husband and I were building a new home in El Mirage and had just moved into an apartment. I ended up in C Lincoln Deer Valley after being told my kidneys were failing and I was having trouble breathing. While there I met all my wonderful doctors. Dr. is my GP, He's actually an internest specializing in diabetes. Dr. Jerry Olshan is actually my oncologist but he is also a hematologist and was brought on board when they wanted to do a thoracotomy to get a slice of lung and dicovered I have a shortage of a clotting factor. Dr. Lorie Loreman is my pulmonologist. She is a mother hen. I love them all. Anyhow spent a week on a respirator and then two weeks recovering from NSIP although it was IPF then Im sure. My mother died of IPF in Wisconsin in 1996 and I kept asking them if it was the same but they thought no. After weaning from o2 and prednisone over 6 months, my lungs stayed the same for 5 years. Then in March of 07 I got pneumonia for no good reason and went home with the o2 again. I only used it at night with my cpap until December of 07. My husband was very ill and I went and bought an oximeter and realized that at rest Im fine but the minute I started moving my sats dropped into the upper 70's. So I put myself on o2 24/7 and Dr. Loreman agreed it was time. At that time my diffusion rate was 55%, not great but not horrible. Well 1 year later my CT shows more changes and my PFT puts my diffusion at 38%. I knew it was gonna be low because I went to my appointment ready to ask for a scooter. I just cant get around without using my portables at full blast and they dont last long then. When I saw here she said it was time to think about Transplant. I was surprised as I didnt even think they would try that because of the cancer, etc. But we are going to try. I have not heard from St. Joes yet, which does not surprise me. My husband was there just before he died and frankly I prefer JCL. St. Joes is a big teaching hospital and much less " friendly " than JCL but hell they can call me nasty names if it will help me live till my grandkids grow up. As much as I miss my husband (he passed away last April) I have kids and grandkids that still need me. Your right about the weather, so much easier to breath when its hot and dry. Monsoom sucks but then at least we dont have to shovel it. Who are your doctors? I really want St Joes to call me, not being transplantable I can handle, its the not knowing that suck so bad! Hi Dyane, My name is G. and I live in Anthem, Arizona. I was finally dx with IPF in May '07, after being mis-diagonised for two years. I would like to know more about your DRs and about the St. ph Hospital Transplant program. How long have you been going to St. Joe's and do you live in Phoenix? Yes it will be 85 this weekend and I will love it even better when it gets up to 100 and stays there, the warmer it gets the better my breathing is---so I love the heat. You will love this board, it is a very loving, caring and knowledgeable group of " angels " that will give all the support that is possible, both spiritually and emotionally. Welcome aboard and glad you found us. G. UIP/IPF 5/07 AZ. -- Dyane 53 Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF 07, lipodermatosclerosis 08, and Ive forgotten the rest HA HA Quote Link to comment Share on other sites More sharing options...
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