Guest guest Posted June 12, 2009 Report Share Posted June 12, 2009 Hi Joy,I found your comment about Raghu interesting. He sure 'put me off' the first visit as he declared, "You have Interstitial Lung Disease" . . . just blurted it out. Since then we have gotten on well. I rather like honesty even when it is hard to take. He does tell me that he thinks I can live a long life and respects my lack of enthusiasm for the various torturous tests he would prefer that I do when I say "no" too. What is PAH? Is Dr. Keenan a pulmonologist or cardiologist or something altogether different? Why do you like her better? Do they have a cure or acceptable treatment for PAH?Best of luck - I'll keep you in my thoughts and prayers. I see that you are in Seattle area too. Is there a local support group? I'm in Bellevue just across the lake - would love to meet if you would.Enjoying the beautiful weather and fantastic flowers,Peggy Ellis (new to the NW and enjoying it like a vacation)Subject: PAHTo: Breathe-Support Date: Friday, June 12, 2009, 5:03 PM I've been away fromt he group for some time as I was doing okay. Now, I'm back on 02, and a new disease...PAH. So, can anyone with this disease tell me how they are doing with it? I was just diagnosed with it. My top # was 43, 12 pts up from my last eco over a year ago. I no longer see Raghu - I didn't feel he was very receptive and helpful for me. I now see Lynn Keenan at NW Hosp ... she is great! Thanks, Joy in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2009 Report Share Posted June 12, 2009 I remember you well Joy in Seattle..I'm sorry to hear of this development...it does seem to be a common secondary problem with PF. It's good to hear that you've found a Pulmo that you feel comfortable with. I do wonder how these busy reseraching Specialists at majorTeaching Hospitals, with lots of international exposure, manage to be good at the daily 'onhand' stuff at the same time. They must be mean time/energy/focus-jugglers! Stay bonboard with us now & keep us 'in the loop'..we care about you! in Oz PS I can't help with any advice...there are quite a few here with the same problem so someone will jump in on this subject I'm sure!>> I've been away fromt he group for some time as I was doing okay. Now, I'm back on 02, and a new disease...PAH.> > So, can anyone with this disease tell me how they are doing with it? I was just diagnosed with it. My top # was 43, 12 pts up from my last eco over a year ago.> I no longer see Raghu - I didn't feel he was very receptive and helpful for me. I now see Lynn Keenan at NW Hosp ... she is great!> Thanks, Joy in Seattle> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Dr. Raghu is very knowledgable.....He just didn't follow through on some of my comments in a timely manner - I appreciate Dr. Lynn Keenan at NW Hosp more. She is in contact with Dr. R regarding my treatment tho. Joy > > > Subject: PAH > To: Breathe-Support > Date: Friday, June 12, 2009, 5:03 PM > > > > > > > > > > > > > > > > > > I've been away fromt he group for some time as I was doing okay. Now, I'm back on 02, and a new disease...PAH. > > > > So, can anyone with this disease tell me how they are doing with it? I was just diagnosed with it. My top # was 43, 12 pts up from my last eco over a year ago. > > I no longer see Raghu - I didn't feel he was very receptive and helpful for me. I now see Lynn Keenan at NW Hosp ... she is great! > > Thanks, Joy in Seattle > Quote Link to comment Share on other sites More sharing options...
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