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i want to scream..

R

relat

New member
thanks for your deep thinking messages Coltsfan715,Diane,and Risa for your wishes.I agree with trying to live life ang enjoy the good times it has.What pains in my case is that i never had much time with my brother,because i was studying and living away,not at my parents where my brother lives.Before the diagnosis there where not many health problems that my brother had to go through,after the diagnosis the psychological factor made things worse and of course the cf that progresses with the age(now he has diabetes etc).It is more difficult to live away(i am still away)from him,you feel like you can not control things.One the other hand,when i go home we puss my brother many times to do therapies,we discuss all day sometimes about cf and make him be anxious(me and my parents)so we make him afraid sometimes.But he also is not adjusted with his cf completely i think,he does not do all his therapies,and that makes me anxious and then i puss him etc.Some days ago i made him ask doctor how to clean mucus and he bought a nebulizer,i told him to buy the vest too,and he said another time.It's all these things that make me be anxious,and the site helps,although i feel it puts anxiety sometimes .

All the best,

relat.
 
J

Jem

New member
Thank you relat for your kind words, good wishes and prayers. I am very appreciative of our new friendship and it will be nice getting to know you on this forum.

I too have a brother who I love very much that does not do all his meds and treatments. I wish I had some magic words that could inspire him to be faithful to them but ultimately we each have to make our own choice with how we will deal with our health. I will always be there for him.

On a good note, it 's great that your brother now has a nebulizer, a must for his care. Is he aware of this web site? He could learn a lot about treatments and he could get some extra support. We can all use that. It wasn't until I stumbled across this web forum back in April that I learned about Hypertonic Saline in detail and then at my next cf appointment I asked to be put on it. I also learned how to use the Vest correctly, thanks to reading Amy's blog, which has helped me too. My Fev 1 has gone up from 42 to 48 since last April and I attribute it to what I have learned here on this web forum and being very diligent with my treatments. This forum inspires one to be so. I now ask more questions at my checkups (I go with a list) because of what others have been willing to share about their experiences. We are all learning from each other and supporting each other. That is what keeps us together. This forum has been a great blessing to me and I know to many others as well. Look how we communicate on this forum from all over the world.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I want to say "thank you" to everyone who, posts, lurks and runs this forum.<img src="i/expressions/face-icon-small-happy.gif" border="0">

I see that you have received very good advice from others who live with cf. Please keep sharing and know that we are here for you and your brother. No question is too little or big to ask. And by the way your English is very good.

Keeping you and your brother in prayer.<img src="i/expressions/heart.gif" border="0">
 
J

Jem

New member
Thank you relat for your kind words, good wishes and prayers. I am very appreciative of our new friendship and it will be nice getting to know you on this forum.

I too have a brother who I love very much that does not do all his meds and treatments. I wish I had some magic words that could inspire him to be faithful to them but ultimately we each have to make our own choice with how we will deal with our health. I will always be there for him.

On a good note, it 's great that your brother now has a nebulizer, a must for his care. Is he aware of this web site? He could learn a lot about treatments and he could get some extra support. We can all use that. It wasn't until I stumbled across this web forum back in April that I learned about Hypertonic Saline in detail and then at my next cf appointment I asked to be put on it. I also learned how to use the Vest correctly, thanks to reading Amy's blog, which has helped me too. My Fev 1 has gone up from 42 to 48 since last April and I attribute it to what I have learned here on this web forum and being very diligent with my treatments. This forum inspires one to be so. I now ask more questions at my checkups (I go with a list) because of what others have been willing to share about their experiences. We are all learning from each other and supporting each other. That is what keeps us together. This forum has been a great blessing to me and I know to many others as well. Look how we communicate on this forum from all over the world.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I want to say "thank you" to everyone who, posts, lurks and runs this forum.<img src="i/expressions/face-icon-small-happy.gif" border="0">

I see that you have received very good advice from others who live with cf. Please keep sharing and know that we are here for you and your brother. No question is too little or big to ask. And by the way your English is very good.

Keeping you and your brother in prayer.<img src="i/expressions/heart.gif" border="0">
 
J

Jem

New member
Thank you relat for your kind words, good wishes and prayers. I am very appreciative of our new friendship and it will be nice getting to know you on this forum.

I too have a brother who I love very much that does not do all his meds and treatments. I wish I had some magic words that could inspire him to be faithful to them but ultimately we each have to make our own choice with how we will deal with our health. I will always be there for him.

On a good note, it 's great that your brother now has a nebulizer, a must for his care. Is he aware of this web site? He could learn a lot about treatments and he could get some extra support. We can all use that. It wasn't until I stumbled across this web forum back in April that I learned about Hypertonic Saline in detail and then at my next cf appointment I asked to be put on it. I also learned how to use the Vest correctly, thanks to reading Amy's blog, which has helped me too. My Fev 1 has gone up from 42 to 48 since last April and I attribute it to what I have learned here on this web forum and being very diligent with my treatments. This forum inspires one to be so. I now ask more questions at my checkups (I go with a list) because of what others have been willing to share about their experiences. We are all learning from each other and supporting each other. That is what keeps us together. This forum has been a great blessing to me and I know to many others as well. Look how we communicate on this forum from all over the world.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I want to say "thank you" to everyone who, posts, lurks and runs this forum.<img src="i/expressions/face-icon-small-happy.gif" border="0">

I see that you have received very good advice from others who live with cf. Please keep sharing and know that we are here for you and your brother. No question is too little or big to ask. And by the way your English is very good.

Keeping you and your brother in prayer.<img src="i/expressions/heart.gif" border="0">
 
J

Jane

Digital opinion leader
We are so fortunate to have such wise and supportive people on this forum relat! I know they were answering YOUR question, but it is good advice for the rest of us as well.

I don't have anything better to add. As a care-giver, my perspective of CF is different from the people who have the disease. I do agree its so hard to watch when someone you love is not doing his best to keep himself healthy. That feeling of frustration does take over your life at times. You just have to do the best you can day to day. Some things are beyond our control. It makes me scream sometimes too.

Please know that others care and understand what you are dealing with.
 
J

Jane

Digital opinion leader
We are so fortunate to have such wise and supportive people on this forum relat! I know they were answering YOUR question, but it is good advice for the rest of us as well.

I don't have anything better to add. As a care-giver, my perspective of CF is different from the people who have the disease. I do agree its so hard to watch when someone you love is not doing his best to keep himself healthy. That feeling of frustration does take over your life at times. You just have to do the best you can day to day. Some things are beyond our control. It makes me scream sometimes too.

Please know that others care and understand what you are dealing with.
 
J

Jane

Digital opinion leader
We are so fortunate to have such wise and supportive people on this forum relat! I know they were answering YOUR question, but it is good advice for the rest of us as well.

I don't have anything better to add. As a care-giver, my perspective of CF is different from the people who have the disease. I do agree its so hard to watch when someone you love is not doing his best to keep himself healthy. That feeling of frustration does take over your life at times. You just have to do the best you can day to day. Some things are beyond our control. It makes me scream sometimes too.

Please know that others care and understand what you are dealing with.
 
J

Jem

New member
Culturing pseudomonas (PA) by age 27 is pretty typical. There are many of us on this forum that have cultured PA for many many years, myself included. I'm sure your brother's doctor will have a plan on how to treat the PA, either to try and get rid of it or if that is not possible then to keep it at a level where it is not hurting his lung function. Relat, I really wouldn't be too concerned about him having it as long as he is following his doctor's advice and doing his treatments.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Keeping you both in prayer.
 
J

Jem

New member
Culturing pseudomonas (PA) by age 27 is pretty typical. There are many of us on this forum that have cultured PA for many many years, myself included. I'm sure your brother's doctor will have a plan on how to treat the PA, either to try and get rid of it or if that is not possible then to keep it at a level where it is not hurting his lung function. Relat, I really wouldn't be too concerned about him having it as long as he is following his doctor's advice and doing his treatments.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Keeping you both in prayer.
 
J

Jem

New member
Culturing pseudomonas (PA) by age 27 is pretty typical. There are many of us on this forum that have cultured PA for many many years, myself included. I'm sure your brother's doctor will have a plan on how to treat the PA, either to try and get rid of it or if that is not possible then to keep it at a level where it is not hurting his lung function. Relat, I really wouldn't be too concerned about him having it as long as he is following his doctor's advice and doing his treatments.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Keeping you both in prayer.
 
R

relat

New member
Your interest is amazing....I wish God helps you get over everything.I worry because health system is not good here,and it affects your possibilities of becoming well.I pray to God always and for you too!

relat
 
R

relat

New member
Your interest is amazing....I wish God helps you get over everything.I worry because health system is not good here,and it affects your possibilities of becoming well.I pray to God always and for you too!

relat
 
R

relat

New member
Your interest is amazing....I wish God helps you get over everything.I worry because health system is not good here,and it affects your possibilities of becoming well.I pray to God always and for you too!

relat
 
J

Jem

New member
Having a good health care system is a real concern. Now this takes time but keep reading, learning and asking questions from us, others and from your brother's doctor. The more you both learn the better he will be for it.

And thanks so much relat, for your prayers. I am very very appreciative. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jem

New member
Having a good health care system is a real concern. Now this takes time but keep reading, learning and asking questions from us, others and from your brother's doctor. The more you both learn the better he will be for it.

And thanks so much relat, for your prayers. I am very very appreciative. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jem

New member
Having a good health care system is a real concern. Now this takes time but keep reading, learning and asking questions from us, others and from your brother's doctor. The more you both learn the better he will be for it.

And thanks so much relat, for your prayers. I am very very appreciative. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

relat

New member
imagine...we dont have a cf center here,not one in the whole country.anyway...

''see'' you again...

relat
 
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