Guest guest Posted July 17, 2009 Report Share Posted July 17, 2009 Hi guys, Yesterday was my first anniversary for being in the Bosentan Study program. My PFT's have remained the same during the year with the exception of my DLCO, it has been in a virtual slow decline for the last two years. The best recorded reading of my DLCO was May '07, it was 69% and the worst was in March '09--it was 49%. Yesterday my DLCO reading was 63%, both Pulmonoligists that I met with yesterday were suprised at the drastic increase, so we decided to do it again today, I did it 3 different times and they all came back confirming the big increase!!!!!!! The Doc says I don't know what you are doing --but keep doin' it. My Pulmonoligist has scheduled a transplant evaluation at the Univerisity of Washington Medical Center for me and the UWMC has already contacted us about the process. We are currently waiting for our appointment date. We did find out that they have done 33 transplants so far this year and it sounds like they are "chomping at the bits" to do some more--LOL. We asked about age limits for transplants and they said it is 65, IF the patient has any underlying complications such as diabetes, etc. but, it is 70 if there are no other problems. I did explain that I felt I was a few years away from a transplant (I hope), so was concerned about doing an evaluation to early, but they were eager to do the evaluation, so when they give me a date, I will go and interview the transplant team and see if I want them to do it when the time comes--LOL. G. UIP/IPF 5/07 AZ. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 Hi ! Give Dakota a pat on the head from me. Rich and I are going to UWMC in Oct for my PF eval. Is this the closest MC for you?? MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Good News for Hi guys, Yesterday was my first anniversary for being in the Bosentan Study program. My PFT's have remained the same during the year with the exception of my DLCO, it has been in a virtual slow decline for the last two years. The best recorded reading of my DLCO was May '07, it was 69% and the worst was in March '09--it was 49%. Yesterday my DLCO reading was 63%, both Pulmonoligists that I met with yesterday were suprised at the drastic increase, so we decided to do it again today, I did it 3 different times and they all came back confirming the big increase!!!!!!! The Doc says I don't know what you are doing --but keep doin' it. My Pulmonoligist has scheduled a transplant evaluation at the Univerisity of Washington Medical Center for me and the UWMC has already contacted us about the process. We are currently waiting for our appointment date. We did find out that they have done 33 transplants so far this year and it sounds like they are "chomping at the bits" to do some more--LOL. We asked about age limits for transplants and they said it is 65, IF the patient has any underlying complications such as diabetes, etc. but, it is 70 if there are no other problems. I did explain that I felt I was a few years away from a transplant (I hope), so was concerned about doing an evaluation to early, but they were eager to do the evaluation, so when they give me a date, I will go and interview the transplant team and see if I want them to do it when the time comes--LOL. G. UIP/IPF 5/07 AZ. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 , I was in St Jo's and it has a great lung ICU and ward. My pulmonologist is Dr. Hodges and he is at St. Jo's and he is quite good. He used to be at National Jewish. Joyce Rudy AZ birds Good News For Sher, No, the UWMC is not the closest for me, but All my family lives in Washington State so it would be easier for Sharon, Dakota and me to set up camp there when the time comes. My son only lives 10 miles from the UWMC, he is single and has a great house for me to be at after a transplant. I am also thinking about getting evaluated at St. ph's Hospital in Phoenix, but just thinking at this point in time. Lots to think about!!!! Peggy, Every time I do the PFT's and the Doc examines me and we go over the statistics the bottom line is HOW DO YOU FEEL, so I guess we are good as gold until we don't feel good--right? P.S. I thought your post referring to KY was Jelly not the State of Kentucky----hummm Wasn't the Movie "Deliverance" filmed in KY, -- LOL. G. Quote Link to comment Share on other sites More sharing options...
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