Re: Re: I dont where to go....

[Guest guest]

http://www.medical-library.net/sites/framer.html?/sites/_n-acetyl-l-cysteine_(nac).html

[Guest guest]

Hi, Thanks Diane for your input and support. I do take Ensure three times a day I have not seen much change in the last two/three weeks other than lose more. I was normal weight at 167# now I am down to about 136. That is quite a difference in numbers. My appetite is not the best I saw the pulmonologist about two weeks ago and he prescribed the steroids (Prenisone) and seeing the effects it has had on me I have second thoughts about taking it but thats all he offered. I will ask him about the nutritionist when I see him in 10 days. I am going to try NAC and possibly look also into Pirfenidone. What I know about them is what I have read in the posts and it seems like people have had some luck with them.

May God be with you now and always.

Vitt

[Guest guest]

Does your pulmonologist work with a nutritionist? They would be able to help you so you take in the most calories without feeling too full....you are losing weight because your body is working hard to stay oxygenated....there are lots of canned drinks that are high in calories and nutrients that you need...you need to see if you can find one that you like...there are even powdered mixes that you can put into milk and juice...talk to your doctor!

--Diane Quinlan dianequinlan@...

The shorness of breath, the coughing, the pain on each side of my ribs, the weakness, the off balance are all very debilitating and physically draining. I have lost some 30 plus pounds, I feel I am taking nutrients to replace what I lost yet it doesnt seem enough.

[Guest guest]

Vitt, I have a brother-in law ( Blind Deaf, Mute) that had cancer. we had to give him Boost to keep his weight up. After the surgery was done, he had 32 radiation treatments on his jaw line to his color bone. The Dr.'s told us he would have blisters and be so burnt from the treatments that he would need liquid through his feeding tube. God didn't allow any of those things. Ray did not know what the word cancer meant so there was no fear of it. His Dr.'s were and still are amazed with him. He is not retarded but environmentally retarded. He's never seen or heard anything so he was not afraid. I get so much inspiration from him. I just felt like this might let you know God does take care of his children. Have faith. OH, The reason I wrote all this. Ray didn't lose one lb. He loves Boost the liquid with a lot of calories. He will drink them anytime he gets in the pantry. He was getting a little fat so we have done away with the Boost. You can buy it at the Gro. store. God Bless. I do have 70 or so lbs. I'd like to get rid of.. LOL Peggy

on 2/6/06 4:28 PM, Mdntehawk@... at Mdntehawk@... wrote:

Hi, Thanks Diane for your input and support. I do take Ensure three times a day I have not seen much change in the last two/three weeks other than lose more. I was normal weight at 167# now I am down to about 136. That is quite a difference in numbers. My appetite is not the best I saw the pulmonologist about two weeks ago and he prescribed the steroids (Prenisone) and seeing the effects it has had on me I have second thoughts about taking it but thats all he offered. I will ask him about the nutritionist when I see him in 10 days. I am going to try NAC and possibly look also into Pirfenidone. What I know about them is what I have read in the posts and it seems like people have had some luck with them.

May God be with you now and always.

Vitt

[Guest guest]

Hi Vitt, I too am on NAC, Neprinal and as of lastfriday Natur-leaf I' ve heard you feel alittle worstbefore you feel better, in a month I go back forbreathing test and cat scan ,than I might have betterimformation as to my situation, pus I take pynogenal,grape seed, vitamin c fish oils doris oh yaeh andrehab ..........mentally this has been the best thingfor me

Please share what Nepinal is and does...and that of Nature-leaf, too. Thank you.

~Ginger~

[Guest guest]

Pirfenidone is a " clinical trial " though still isn't it? I know it was at

least and they had strict guidelines they were following. My husband

couldn't qualify for a low " value " on one of the PFT evals. I do think it

has real possibilities though for somewhere in the future. Judy

>

>Reply-To: Breathe-Support

>To: <Breathe-Support >

>Subject: Re: Re: I dont where to go....

>Date: Mon, 06 Feb 2006 17:00:42 -0500

>

>Vitt, I have a brother-in law ( Blind Deaf, Mute) that had cancer. we had

>to

>give him Boost to keep his weight up. After the surgery was done, he had 32

>radiation treatments on his jaw line to his color bone. The Dr.'s told us

>he

>would have blisters and be so burnt from the treatments that he would need

>liquid through his feeding tube. God didn't allow any of those things. Ray

>did not know what the word cancer meant so there was no fear of it. His

>Dr.'s were and still are amazed with him. He is not retarded but

>environmentally retarded. He's never seen or heard anything so he was not

>afraid. I get so much inspiration from him. I just felt like this might let

>you know God does take care of his children. Have faith. OH, The reason I

>wrote all this. Ray didn't lose one lb. He loves Boost the liquid with a

>lot

>of calories. He will drink them anytime he gets in the pantry. He was

>getting a little fat so we have done away with the Boost. You can buy it at

>the Gro. store. God Bless. I do have 70 or so lbs. I'd like to get rid of..

>LOL Peggy

>

>

>on 2/6/06 4:28 PM, Mdntehawk@... at Mdntehawk@... wrote:

>

>Hi, Thanks Diane for your input and support. I do take Ensure three times

>a

>day I have not seen much change in the last two/three weeks other than lose

>more. I was normal weight at 167# now I am down to about 136. That is

>quite a difference in numbers. My appetite is not the best I saw the

>pulmonologist about two weeks ago and he prescribed the steroids

>(Prenisone) and seeing the effects it has had on me I have second thoughts

>about taking it but thats all he offered. I will ask him about the

>nutritionist when I see him in 10 days. I am going to try NAC and possibly

>look also into Pirfenidone. What I know about them is what I have read in

>the posts and it seems like people have had some luck with them.

>May God be with you now and always.

>Vitt

>

>

>

[Guest guest]

Hi Vitt, I too am on NAC, Neprinal and as of last

friday Natur-leaf I' ve heard you feel alittle worst

before you feel better, in a month I go back for

breathing test and cat scan ,than I might have better

imformation as to my situation, pus I take pynogenal,

grape seed, vitamin c fish oils doris oh yaeh and

rehab ..........mentally this has been the best thing

for me

--- artemis682003 wrote:

> Hi, I have been diagnosed with PF after a year and a

> half of seeing

> different drs. I am now seeing a pulmonologist and

> he has prescribed

> Prednisone, I cant say it is helping any as he

> stated there is not much

> anyone can do for this disease but possibly

> steroids. The shorness of

> breath, the coughing, the pain on each side of my

> ribs, the weakness,

> the off balance are all very debilitating and

> physically draining. I

> have lost some 30 plus pounds, I feel I am taking

> nutrients to replace

> what I lost yet it doesnt seem enough. I have read

> the past posts as

> to Neprinol and NAC and would like to acquire any

> information on either

> or both of these supplements. Please advise in as

> much as I know each

> case is diferent.

> Thanks much for you help.

> Vitt

>

>

>

>

>

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