Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 more thoughts to share of my experiences. the not so good, healing time is time comsuming with lots of visits to the docs for all types of tests. some days we're there for 5-6 hours. I have five infusions to control the CMV that last fours each, makes a very long time to lay flat. meds aren't quite a much as some patients are taking. nausea happens and loss of appetite, everything tastes like cardboard. I'm taking about 12 diff types of meds, many of these will end in time the big P is one but I'm down to 10mil daily. Prograf is twice daily as in Imrand. now the great news!!!! wonderful that I'm still above the grass, without the surgery I don't think I would be by now. I'm feeling stronger and improve daily. yet there are days I backup, but moving forward each day. I've met many who are celebrating years of life after transplant( 5 up to 14 years)!!!!! I found out how wonderful life really is and after decades of working for the man( sub teacher) its time to smell the roses and kick back. I'm sorry to hear of Dales passing, much to early!!!! take care!!! george ks/mo 9-24-08 t. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 , Boy how awesome is it to hear from you and feel the joy radiating right out of your message. I'm so excited for you. Please keep looking after you and enjoying every minute you've got! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Saturday, November 8, 2008 12:57:27 PMSubject: thoughts from st. louis more thoughts to share of my experiences. the not so good, healing time is time comsuming with lots of visits to the docs for all types of tests. some days we're there for 5-6 hours. I have five infusions to control the CMV that last fours each, makes a very long time to lay flat. meds aren't quite a much as some patients are taking. nausea happens and loss of appetite, everything tastes like cardboard. I'm taking about 12 diff types of meds, many of these will end in time the big P is one but I'm down to 10mil daily. Prograf is twice daily as in Imrand. now the great news!!!! wonderful that I'm still above the grass, without the surgery I don't think I would be by now. I'm feeling stronger and improve daily. yet there are days I backup, but moving forward each day. I've met many who are celebrating years of life after transplant( 5 up to 14 years)!!!!! I found out how wonderful life really is and after decades of working for the man( sub teacher) its time to smell the roses and kick back. I'm sorry to hear of Dales passing, much to early!!!! take care!!! george ks/mo 9-24-08 t. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 , to quote you, "stay the course" there are better days ahead! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! thoughts from st. louis more thoughts to share of my experiences. the not so good, healing time is time comsuming with lots of visits to the docs for all types of tests. some days we're there for 5-6 hours. I have five infusions to control the CMV that last fours each, makes a very long time to lay flat. meds aren't quite a much as some patients are taking. nausea happens and loss of appetite, everything tastes like cardboard. I'm taking about 12 diff types of meds, many of these will end in time the big P is one but I'm down to 10mil daily. Prograf is twice daily as in Imrand. now the great news!!!! wonderful that I'm still above the grass, without the surgery I don't think I would be by now. I'm feeling stronger and improve daily. yet there are days I backup, but moving forward each day. I've met many who are celebrating years of life after transplant( 5 up to 14 years)!!!!! I found out how wonderful life really is and after decades of working for the man( sub teacher) its time to smell the roses and kick back. I'm sorry to hear of Dales passing, much to early!!!! take care!!! george ks/mo 9-24-08 t. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Sher its the only course for me as well as everyone here. the bumps will get less and less as time goes by. Hey!! thats the title to a song from Boogies movie!!! take care of you!! george ks/mo t 09-24-08 To: Breathe-Support Sent: Saturday, November 8, 2008 12:05:08 PMSubject: Re: thoughts from st. louis , to quote you, "stay the course" there are better days ahead! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! thoughts from st. louis more thoughts to share of my experiences. the not so good, healing time is time comsuming with lots of visits to the docs for all types of tests. some days we're there for 5-6 hours. I have five infusions to control the CMV that last fours each, makes a very long time to lay flat. meds aren't quite a much as some patients are taking. nausea happens and loss of appetite, everything tastes like cardboard. I'm taking about 12 diff types of meds, many of these will end in time the big P is one but I'm down to 10mil daily. Prograf is twice daily as in Imrand. now the great news!!!! wonderful that I'm still above the grass, without the surgery I don't think I would be by now. I'm feeling stronger and improve daily. yet there are days I backup, but moving forward each day. I've met many who are celebrating years of life after transplant( 5 up to 14 years)!!!!! I found out how wonderful life really is and after decades of working for the man( sub teacher) its time to smell the roses and kick back. I'm sorry to hear of Dales passing, much to early!!!! take care!!! george ks/mo 9-24-08 t. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Beth thannk you and please take care of you also!! george ks/mo t 9-24-08 To: Breathe-Support Sent: Saturday, November 8, 2008 12:00:52 PMSubject: Re: thoughts from st. louis , Boy how awesome is it to hear from you and feel the joy radiating right out of your message. I'm so excited for you. Please keep looking after you and enjoying every minute you've got! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: george mathews <georgemathews76@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, November 8, 2008 12:57:27 PMSubject: thoughts from st. louis more thoughts to share of my experiences. the not so good, healing time is time comsuming with lots of visits to the docs for all types of tests. some days we're there for 5-6 hours. I have five infusions to control the CMV that last fours each, makes a very long time to lay flat. meds aren't quite a much as some patients are taking. nausea happens and loss of appetite, everything tastes like cardboard. I'm taking about 12 diff types of meds, many of these will end in time the big P is one but I'm down to 10mil daily. Prograf is twice daily as in Imrand. now the great news!!!! wonderful that I'm still above the grass, without the surgery I don't think I would be by now. I'm feeling stronger and improve daily. yet there are days I backup, but moving forward each day. I've met many who are celebrating years of life after transplant( 5 up to 14 years)!!!!! I found out how wonderful life really is and after decades of working for the man( sub teacher) its time to smell the roses and kick back. I'm sorry to hear of Dales passing, much to early!!!! take care!!! george ks/mo 9-24-08 t. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 Love your expression--wonderful that I'm still above the grass glad you are doing wellPink Joyce IPF 3/06 Pennsylvania Subject: thoughts from st. louisTo: Breathe-Support Date: Saturday, November 8, 2008, 12:57 PM more thoughts to share of my experiences. the not so good, healing time is time comsuming with lots of visits to the docs for all types of tests. some days we're there for 5-6 hours. I have five infusions to control the CMV that last fours each, makes a very long time to lay flat. meds aren't quite a much as some patients are taking. nausea happens and loss of appetite, everything tastes like cardboard. I'm taking about 12 diff types of meds, many of these will end in time the big P is one but I'm down to 10mil daily. Prograf is twice daily as in Imrand. now the great news!!!! wonderful that I'm still above the grass, without the surgery I don't think I would be by now. I'm feeling stronger and improve daily. yet there are days I backup, but moving forward each day. I've met many who are celebrating years of life after transplant( 5 up to 14 years)!!!!! I found out how wonderful life really is and after decades of working for the man( sub teacher) its time to smell the roses and kick back. I'm sorry to hear of Dales passing, much to early!!!! take care!!! george ks/mo 9-24-08 t. Quote Link to comment Share on other sites More sharing options...
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