Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Hi everyone. Sorry I haven't been on line in a few days..I've been trying to get my Christmas stuff done and it's not working. LOL Still have nothing wrapped or baked or my shopping done. Guess I'll let Santa take care of the rest. I went to Stanford Tuesday and saw the pulmonologist. She is a wonderful Dr and has 8 Rp patients. She is experienced with stents. I took another PFT and it was not perfect but okay. She saw some fibrocystic scaring in my lung (from the CT) and said it was RP related but nothing to worry about now. The pred and Plaquenil should keep it in check. She is confering with the cardiologist because she thinks my shortness of breath is coming from my heart and not the lungs.. Is going to suggest another angiogram. She said we would work back from that. She wants me to have a PFT every 6 months to alway check my airways. It was a good visit and good news. I have a wonderful team finally and am feeling pretty good that the RP has not done ALOT of damage. Have been having chest pains since the PFT. She said it was from the hard breathing and that it flared my chest (ribs) Took a couple more mg of pred the last few days but plan on going back to 8mg tomorrow. I'm really behind on my mail and promise to try to catch up today. If I forget someone, please know it was not intentional. I love ya all hugs I'll try not to send a zillion posts. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Hi everyone. Sorry I haven't been on line in a few days..I've been trying to get my Christmas stuff done and it's not working. LOL Still have nothing wrapped or baked or my shopping done. Guess I'll let Santa take care of the rest. I went to Stanford Tuesday and saw the pulmonologist. She is a wonderful Dr and has 8 Rp patients. She is experienced with stents. I took another PFT and it was not perfect but okay. She saw some fibrocystic scaring in my lung (from the CT) and said it was RP related but nothing to worry about now. The pred and Plaquenil should keep it in check. She is confering with the cardiologist because she thinks my shortness of breath is coming from my heart and not the lungs.. Is going to suggest another angiogram. She said we would work back from that. She wants me to have a PFT every 6 months to alway check my airways. It was a good visit and good news. I have a wonderful team finally and am feeling pretty good that the RP has not done ALOT of damage. Have been having chest pains since the PFT. She said it was from the hard breathing and that it flared my chest (ribs) Took a couple more mg of pred the last few days but plan on going back to 8mg tomorrow. I'm really behind on my mail and promise to try to catch up today. If I forget someone, please know it was not intentional. I love ya all hugs I'll try not to send a zillion posts. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Thanks , I already know I have valve problems caused from RP.. Think they just want to check and make sure they aren't worse.. I'm very confident they aren't. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Thanks , I already know I have valve problems caused from RP.. Think they just want to check and make sure they aren't worse.. I'm very confident they aren't. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Hi i am so glad that you got good news from the Doc and that you're doing fine. I hope that there is not heart trouble. I will keep you in my thoughts and prayers as always. love you veronica MY dr visit Hi everyone. Sorry I haven't been on line in a few days..I've been trying to get my Christmas stuff done and it's not working. LOL Still have nothing wrapped or baked or my shopping done. Guess I'll let Santa take care of the rest. I went to Stanford Tuesday and saw the pulmonologist. She is a wonderful Dr and has 8 Rp patients. She is experienced with stents. I took another PFT and it was not perfect but okay. She saw some fibrocystic scaring in my lung (from the CT) and said it was RP related but nothing to worry about now. The pred and Plaquenil should keep it in check. She is confering with the cardiologist because she thinks my shortness of breath is coming from my heart and not the lungs.. Is going to suggest another angiogram. She said we would work back from that. She wants me to have a PFT every 6 months to alway check my airways. It was a good visit and good news. I have a wonderful team finally and am feeling pretty good that the RP has not done ALOT of damage. Have been having chest pains since the PFT. She said it was from the hard breathing and that it flared my chest (ribs) Took a couple more mg of pred the last few days but plan on going back to 8mg tomorrow. I'm really behind on my mail and promise to try to catch up today. If I forget someone, please know it was not intentional. I love ya allhugsI'll try not to send a zillion posts. LOL DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Hi i am so glad that you got good news from the Doc and that you're doing fine. I hope that there is not heart trouble. I will keep you in my thoughts and prayers as always. love you veronica MY dr visit Hi everyone. Sorry I haven't been on line in a few days..I've been trying to get my Christmas stuff done and it's not working. LOL Still have nothing wrapped or baked or my shopping done. Guess I'll let Santa take care of the rest. I went to Stanford Tuesday and saw the pulmonologist. She is a wonderful Dr and has 8 Rp patients. She is experienced with stents. I took another PFT and it was not perfect but okay. She saw some fibrocystic scaring in my lung (from the CT) and said it was RP related but nothing to worry about now. The pred and Plaquenil should keep it in check. She is confering with the cardiologist because she thinks my shortness of breath is coming from my heart and not the lungs.. Is going to suggest another angiogram. She said we would work back from that. She wants me to have a PFT every 6 months to alway check my airways. It was a good visit and good news. I have a wonderful team finally and am feeling pretty good that the RP has not done ALOT of damage. Have been having chest pains since the PFT. She said it was from the hard breathing and that it flared my chest (ribs) Took a couple more mg of pred the last few days but plan on going back to 8mg tomorrow. I'm really behind on my mail and promise to try to catch up today. If I forget someone, please know it was not intentional. I love ya allhugsI'll try not to send a zillion posts. LOL DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Well it's great that you feel good............ Re: MY dr visit Thanks , I already know I have valve problems caused from RP.. Think they just want to check and make sure they aren't worse.. I'm very confident they aren't. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Well it's great that you feel good............ Re: MY dr visit Thanks , I already know I have valve problems caused from RP.. Think they just want to check and make sure they aren't worse.. I'm very confident they aren't. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 HI , So glad to hear the doctor's visit went well. I will keep you in my prayers. Love, Lu It was a good visit and good news. I have a wonderful team finally and am feeling pretty good that the RP has not done ALOT of damage. Have been having chest pains since the PFT. She said it was from the hard breathing and that it flared my chest (ribs) Took a couple more mg of pred the last few days but plan on going back to 8mg tomorrow. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 HI , So glad to hear the doctor's visit went well. I will keep you in my prayers. Love, Lu It was a good visit and good news. I have a wonderful team finally and am feeling pretty good that the RP has not done ALOT of damage. Have been having chest pains since the PFT. She said it was from the hard breathing and that it flared my chest (ribs) Took a couple more mg of pred the last few days but plan on going back to 8mg tomorrow. Quote Link to comment Share on other sites More sharing options...
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