Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Joyce Sounds like you answered your own when to list question at least to some extent. As they take you further in the process I'm sure they can help you with that balance of determining the right time to list and taking you through each stage. Timing involves knowing everything they can about you and your body and alll your conditions. All the transplant teams I've heard about seem to be excellent and supporting and comforting the patient. They can help you with the questions of whether its time to be listed. You mentioned chart computerization and thats a place I think the doctors here are very much behind. Now, the large teaching hospitals here are quite computerized in some areas but, otherwise, doctors are not. > > saw transplant doc yesterday > informed him that i am ready to list > > informed him about change in O2 levels since going on Cellcept and Dapsone last week > he said that Dapsone can cause decrease in O2 levels and told me to stop taking it > then he prescribed Mepron > > when the nurse checked my vitals prior to seeing doc, the O2 level stayed at 93% while sitting with oxygen on > > last monday when we went to the holiday party at lung transplant center, i walked quickly from garage to party location with no problems > yesterday, when i did the same walk, i was huffing and puffing and slowing down > > i have also been in contact with pulmonary doc nurse about change in o2 levels > nurse called me back as we were driving home from transplant doc appt. > pulmonary doc said to continue with meds > i informed nurse about appt with transplant doc > > yesterday i found out that the two docs have offices next to each other, even though the clinics are in different sections of the hospital > > Bruce-- > re: hospital comforts? > some of the hospitals in this area are completely computerized > the docs do not carry a paper chart with them, they use the computer for everything > > so when I see the transplant doc, he has access to whatever the pulmonary doc wrote in my chart on the computer, etc > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Joyce, I also take Mepron...be careful with it...you need to take it after food and that food should have some fat content. Something about it being soluble in fatty foods and easier to get into body. I've been taking it since the very beginning..it's an anti-infectious med...used previously to help stave off certain pneumonias contracted by HIV patients.It is supposed to help me from getting sick with the Imuran and prednisone messing with the immune system.It tastes awful and be carteful.. the horrid yellow colored liquid stains everything it touches!!! Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Joyce T Rosenberg wrote: saw transplant doc yesterday informed him that i am ready to list informed him about change in O2 levels since going on Cellcept and Dapsone last week he said that Dapsone can cause decrease in O2 levels and told me to stop taking it then he prescribed Mepron when the nurse checked my vitals prior to seeing doc, the O2 level stayed at 93% while sitting with oxygen on last monday when we went to the holiday party at lung transplant center, i walked quickly from garage to party location with no problems yesterday, when i did the same walk, i was huffing and puffing and slowing down i have also been in contact with pulmonary doc nurse about change in o2 levels nurse called me back as we were driving home from transplant doc appt. pulmonary doc said to continue with meds i informed nurse about appt with transplant doc yesterday i found out that the two docs have offices next to each other, even though the clinics are in different sections of the hospital Bruce-- re: hospital comforts? some of the hospitals in this area are completely computerized the docs do not carry a paper chart with them, they use the computer for everything so when I see the transplant doc, he has access to whatever the pulmonary doc wrote in my chart on the computer, etc Pink Joyce IPF 3/06 Pennsylvania Donate Life No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.19/1853 - Release Date: 12/17/2008 8:31 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Joyce ... so you are ready to list. I hope it happens quickly for you. I would think the waiting is hard. Transplant is not an option for me but waiting seems to bring on mental-monsters, for me at least. Of course I wish for you all good things and people to assist you in the transplant. God Bless. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: transplant doc JoyceSounds like you answered your own when to list question at least to someextent. As they take you further in the process I'm sure they can helpyou with that balance of determining the right time to list and takingyou through each stage. Timing involves knowing everything they canabout you and your body and alll your conditions. All the transplantteams I've heard about seem to be excellent and supporting andcomforting the patient. They can help you with the questions of whetherits time to be listed.You mentioned chart computerization and thats a place I think thedoctors here are very much behind. Now, the large teaching hospitalshere are quite computerized in some areas but, otherwise, doctors arenot.>> saw transplant doc yesterday> informed him that i am ready to list>> informed him about change in O2 levels since going on Cellcept andDapsone last week> he said that Dapsone can cause decrease in O2 levels and told me tostop taking it> then he prescribed Mepron>> when the nurse checked my vitals prior to seeing doc, the O2 levelstayed at 93% while sitting with oxygen on>> last monday when we went to the holiday party at lung transplantcenter, i walked quickly from garage to party location with no problems> yesterday, when i did the same walk, i was huffing and puffing andslowing down>> i have also been in contact with pulmonary doc nurse about change ino2 levels> nurse called me back as we were driving home from transplant doc appt.> pulmonary doc said to continue with meds> i informed nurse about appt with transplant doc>> yesterday i found out that the two docs have offices next to eachother, even though the clinics are in different sections of the hospital>> Bruce--> re: hospital comforts?> some of the hospitals in this area are completely computerized> the docs do not carry a paper chart with them, they use the computerfor everything>> so when I see the transplant doc, he has access to whatever thepulmonary doc wrote in my chart on the computer, etc>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Joyce ... so you are ready to list. I hope it happens quickly for you. I would think the waiting is hard. Transplant is not an option for me but waiting seems to bring on mental-monsters, for me at least. Of course I wish for you all good things and people to assist you in the transplant. God Bless. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: transplant doc JoyceSounds like you answered your own when to list question at least to someextent. As they take you further in the process I'm sure they can helpyou with that balance of determining the right time to list and takingyou through each stage. Timing involves knowing everything they canabout you and your body and alll your conditions. All the transplantteams I've heard about seem to be excellent and supporting andcomforting the patient. They can help you with the questions of whetherits time to be listed.You mentioned chart computerization and thats a place I think thedoctors here are very much behind. Now, the large teaching hospitalshere are quite computerized in some areas but, otherwise, doctors arenot.>> saw transplant doc yesterday> informed him that i am ready to list>> informed him about change in O2 levels since going on Cellcept andDapsone last week> he said that Dapsone can cause decrease in O2 levels and told me tostop taking it> then he prescribed Mepron>> when the nurse checked my vitals prior to seeing doc, the O2 levelstayed at 93% while sitting with oxygen on>> last monday when we went to the holiday party at lung transplantcenter, i walked quickly from garage to party location with no problems> yesterday, when i did the same walk, i was huffing and puffing andslowing down>> i have also been in contact with pulmonary doc nurse about change ino2 levels> nurse called me back as we were driving home from transplant doc appt.> pulmonary doc said to continue with meds> i informed nurse about appt with transplant doc>> yesterday i found out that the two docs have offices next to eachother, even though the clinics are in different sections of the hospital>> Bruce--> re: hospital comforts?> some of the hospitals in this area are completely computerized> the docs do not carry a paper chart with them, they use the computerfor everything>> so when I see the transplant doc, he has access to whatever thepulmonary doc wrote in my chart on the computer, etc>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Joyce, Why did they put you on CellCept before you have a transplant? That is an immune supressant. I never got it until I had my transplant. How many mg do they have you taking. I am taking 1000 mg twice a day. It contribues to tremors, but I finally got myself off of Klonopin and off of Xanax, both of which I was taking to help control the tremors. Judy IPF 11/06 TX 8/07 > > saw transplant doc yesterday > informed him that i am ready to list > > informed him about change in O2 levels since going on Cellcept and Dapsone last week > he said that Dapsone can cause decrease in O2 levels and told me to stop taking it > then he prescribed Mepron > > when the nurse checked my vitals prior to seeing doc, the O2 level stayed at 93% while sitting with oxygen on > > last monday when we went to the holiday party at lung transplant center, i walked quickly from garage to party location with no problems > yesterday, when i did the same walk, i was huffing and puffing and slowing down > > i have also been in contact with pulmonary doc nurse about change in o2 levels > nurse called me back as we were driving home from transplant doc appt. > pulmonary doc said to continue with meds > i informed nurse about appt with transplant doc > > yesterday i found out that the two docs have offices next to each other, even though the clinics are in different sections of the hospital > > Bruce-- > re: hospital comforts? > some of the hospitals in this area are completely computerized > the docs do not carry a paper chart with them, they use the computer for everything > > so when I see the transplant doc, he has access to whatever the pulmonary doc wrote in my chart on the computer, etc > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 thanks for the info on the mepron Pink Joyce IPF 3/06 Pennsylvania Donate Life saw transplant doc yesterday informed him that i am ready to list informed him about change in O2 levels since going on Cellcept and Dapsone last week he said that Dapsone can cause decrease in O2 levels and told me to stop taking it then he prescribed Mepron when the nurse checked my vitals prior to seeing doc, the O2 level stayed at 93% while sitting with oxygen on last monday when we went to the holiday party at lung transplant center, i walked quickly from garage to party location with no problems yesterday, when i did the same walk, i was huffing and puffing and slowing down i have also been in contact with pulmonary doc nurse about change in o2 levels nurse called me back as we were driving home from transplant doc appt. pulmonary doc said to continue with meds i informed nurse about appt with transplant doc yesterday i found out that the two docs have offices next to each other, even though the clinics are in different sections of the hospital Bruce-- re: hospital comforts? some of the hospitals in this area are completely computerized the docs do not carry a paper chart with them, they use the computer for everything so when I see the transplant doc, he has access to whatever the pulmonary doc wrote in my chart on the computer, etc Pink Joyce IPF 3/06 Pennsylvania Donate Life No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.176 / Virus Database: 270.9.19/1853 - Release Date: 12/17/2008 8:31 AM Quote Link to comment Share on other sites More sharing options...
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