Dear all,
This is my fisrt post in this forum n i am new in this Cf world. At 31 years, it might sound strange, but it is only recently taht my wonderful Pulmo(who has started taking my care very recently) suspects a mutany Cf.
I am from India, where for most people (including doctors) CF is just two alphabets n nothing more. So although i had lung illness from young age, n my parents tried thier best, i was always treated for asthma , even when CT scan showed bronchiectasis. I had rib fractures from osteoporosis and recurrent hosp admission due to breathing troubles.
We have no CF Clinics, Cf Doctors, Nurse,Physio, vests, drug support n even n diagnostic facility.CF is hardly known here.
From my symptoms of recurrent infections and general ill health and bronchiectasis at young age without any other reasons, my Pulmo suspects that i have mutant CF. We dont have facility of sweat test or genetic test, but with my symptoms , he has been treating me for CF for a long time.
I am pancreatic sufficient n not very junky always. During infections i have hemoptysis and get exhausted very easily, but more or less stable and able to maintain a full time job and stay alone in a city by myself.
My sputum culture shows multi drug resistant Klebsiella,Sternotrophomona, Pseudomonas,Aspergillus on various occassions n mostly i need IV antibiotics thru my Port, I am losing weight pretty fast now.Despite eating high protien and high cal fod, i am losing . Especally during infectios it is faster. My Doc thinks this loss of weight with PA culture , will decli9ne my health faster n good nutrition through PEG tube can slow down the process.
My Pulmo has advised to go for a PEG tube surgery for weight issues. 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?
thank you so much for your inputs n sharing your experiences,you can visit my site
www.caringbridge.org/visit/pialimukherjee
to post your comments n watch my youtube video on CF awareness at
<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=kqV1IU5YS0I
">http://www.youtube.com/watch?v=kqV1IU5YS0I
</a>thanks n best wishes<img src="i/expressions/face-icon-small-smile.gif" border="0">
teemteem
This is my fisrt post in this forum n i am new in this Cf world. At 31 years, it might sound strange, but it is only recently taht my wonderful Pulmo(who has started taking my care very recently) suspects a mutany Cf.
I am from India, where for most people (including doctors) CF is just two alphabets n nothing more. So although i had lung illness from young age, n my parents tried thier best, i was always treated for asthma , even when CT scan showed bronchiectasis. I had rib fractures from osteoporosis and recurrent hosp admission due to breathing troubles.
We have no CF Clinics, Cf Doctors, Nurse,Physio, vests, drug support n even n diagnostic facility.CF is hardly known here.
From my symptoms of recurrent infections and general ill health and bronchiectasis at young age without any other reasons, my Pulmo suspects that i have mutant CF. We dont have facility of sweat test or genetic test, but with my symptoms , he has been treating me for CF for a long time.
I am pancreatic sufficient n not very junky always. During infections i have hemoptysis and get exhausted very easily, but more or less stable and able to maintain a full time job and stay alone in a city by myself.
My sputum culture shows multi drug resistant Klebsiella,Sternotrophomona, Pseudomonas,Aspergillus on various occassions n mostly i need IV antibiotics thru my Port, I am losing weight pretty fast now.Despite eating high protien and high cal fod, i am losing . Especally during infectios it is faster. My Doc thinks this loss of weight with PA culture , will decli9ne my health faster n good nutrition through PEG tube can slow down the process.
My Pulmo has advised to go for a PEG tube surgery for weight issues. 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?
thank you so much for your inputs n sharing your experiences,you can visit my site
www.caringbridge.org/visit/pialimukherjee
to post your comments n watch my youtube video on CF awareness at
<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=kqV1IU5YS0I
">http://www.youtube.com/watch?v=kqV1IU5YS0I
</a>thanks n best wishes<img src="i/expressions/face-icon-small-smile.gif" border="0">
teemteem