<a target=_blank class=ftalternatingbarlinklarge href="mailto:mukherjee.piali@gmail.com">penpaper2009@gmail.com</a>Hello everyone,
i am new to this forum . I am a 31-year-old with mild CF.(pancreatic sufficient).I am colonized with PA and other multi drug bugs. I have a port for IV thrapy, which mostly i manage alone at home.
But i am not very junky always and more or less stable.
Recently i am having weight issues and feeding problems. My Pulmo thinks i will benefit from PEG tube.
I live in India where for most people(including doctors), CF are just two alphabets. We have no CF clinics, CF doctors, Nurses,Nutritionist n even diagnostic facility. I am still suspected with CF , since we dont have sweat test /genetic test facility in my city( a metro city).
PEG tube is not very common over here and CF is a little-known condition. i am in dire need of information. Almost everyone who heard about it tried to dissuade me against the surgery since it is an artificial process n they cant understand why i cant eat sufficienly thru mouth!!The Cf issues are hard to explain specially to those doctors who have hardly heard the name and for whom CF is just two alphabets!!
But i trust my Pulmo ,who has practiced in one of UK's largest transplant centre and cared for CFers for long.So i stopped listening to others. i trust my Doctor completely.
Since many of you must have gone thru this surgery and maintaining a G Tube, your exp n suggestions wud b very useful to me.
I wanted to know
1 What to expect after the surgery- i mean post op issues like pain, nausea,bowel problems,cough n so on.Can we cough effectively after surgery?else how do we get rid of the junk?i am not very junky always ,but mornings are bad mostly.
can i have the button device right from the beginning instaed of tube hanging from tummy?
when can i take bath after surgery?
2 Is maintaining a PEG single handedly a big issue?it is very troublesome?
3 Can i eat normally with G tube in or do i have to be mainly tube dependant?
4 does the tube need a daily maintainance, even when not used?
5 is a bolus feed ok with tube?is a gravity feed safe at night since i cannot afford the feeding pump worth 1.5 lakh n it is to be paid from our pocket.So i have to choose between a bolus feed or gravity feed. My doc feels i should feed whole night, beside the 3-time bolus feeds. m not too comfortable with a tube feed all night when i am alone at home with no support,medical cover/nurses.
6 what r the signs of trouble with the tube?
thanks n best wishes<img src="i/expressions/face-icon-small-smile.gif" border="0">
piali
i am new to this forum . I am a 31-year-old with mild CF.(pancreatic sufficient).I am colonized with PA and other multi drug bugs. I have a port for IV thrapy, which mostly i manage alone at home.
But i am not very junky always and more or less stable.
Recently i am having weight issues and feeding problems. My Pulmo thinks i will benefit from PEG tube.
I live in India where for most people(including doctors), CF are just two alphabets. We have no CF clinics, CF doctors, Nurses,Nutritionist n even diagnostic facility. I am still suspected with CF , since we dont have sweat test /genetic test facility in my city( a metro city).
PEG tube is not very common over here and CF is a little-known condition. i am in dire need of information. Almost everyone who heard about it tried to dissuade me against the surgery since it is an artificial process n they cant understand why i cant eat sufficienly thru mouth!!The Cf issues are hard to explain specially to those doctors who have hardly heard the name and for whom CF is just two alphabets!!
But i trust my Pulmo ,who has practiced in one of UK's largest transplant centre and cared for CFers for long.So i stopped listening to others. i trust my Doctor completely.
Since many of you must have gone thru this surgery and maintaining a G Tube, your exp n suggestions wud b very useful to me.
I wanted to know
1 What to expect after the surgery- i mean post op issues like pain, nausea,bowel problems,cough n so on.Can we cough effectively after surgery?else how do we get rid of the junk?i am not very junky always ,but mornings are bad mostly.
can i have the button device right from the beginning instaed of tube hanging from tummy?
when can i take bath after surgery?
2 Is maintaining a PEG single handedly a big issue?it is very troublesome?
3 Can i eat normally with G tube in or do i have to be mainly tube dependant?
4 does the tube need a daily maintainance, even when not used?
5 is a bolus feed ok with tube?is a gravity feed safe at night since i cannot afford the feeding pump worth 1.5 lakh n it is to be paid from our pocket.So i have to choose between a bolus feed or gravity feed. My doc feels i should feed whole night, beside the 3-time bolus feeds. m not too comfortable with a tube feed all night when i am alone at home with no support,medical cover/nurses.
6 what r the signs of trouble with the tube?
thanks n best wishes<img src="i/expressions/face-icon-small-smile.gif" border="0">
piali