Re: (unknown)

[Guest guest]

Do you have to take the diuretic at that time or could you take it earlier in the evening or late afternoon?

No, I don't strictly need to but as a stay-at-home mom, I have more schedule flexibility than many others on the list. This means that I can afford to be up several times a night because I can sleep in. Many others on this list do not have that luxury (can you say health benefits, boys and girls?).

Robin s

About Transplantation: organ donation and transplantation

[Guest guest]

Do you have to take the diuretic at that time or could you take it earlier in the evening or late afternoon? I take Lasix twice a day, 120 mg first thing in the morning and then another 120 mg between 3 and 6 PM, any later than that and I am up three to four times a night. Luckily I don't have any other meds to take in the afternoon than just this Lasix though.

Indiana

-----Original Message-----From: Snoop81485@... Sent: Wednesday, May 09, 2001 6:14 PMTo: iga-nephropathy Subject: Re: (unknown)

With IGA is your urine output alot less than usually? It depends. Most of us have a definite variation, although I've noticed that most of us on this list tend to have higher output at night after we go to bed. The only reason I do is because I take a diuretic before I go to bed, last thing at night with some of my transplant drugs. Robin s About Transplantation: organ donation and transplantation

[Guest guest]

The way the Dr talks is that his urine, for the rest of his life, will be discolored, a tea color. Is that right? Some of you that have had this (IGA) for years is your urine dicolored all the time?

Thanks

My own experience was similar to your son. When I had the flu or a bad cold my urine would turn dark.

When I did not have a cold it would sometimes appear dark but as I consumed a large volume of liquid throughout the day the color would get lighter.

[Guest guest]

My own experience was similar to your son. When I had the flu or a bad cold my urine would turn dark

I never had that experience. There is a small subset of us with IgAN that do not get blood in the urine for other than normal gynecological causes (that is, when we have our periods). In my individual case, I was putting out up to eight grams of protein in every 24-hour sample of urine, but no blood or even tea-colored urine, just a normal bright yellow when it was concentrated or normal blood in the urine whenever I menstruated.

This is a risk factor for all the serious complications I experienced. This small subset of us tends to be sicker when diagnosed (67% of my renal function was already gone for good by the time I was diagnosed), and our disease progresses is more likely to progress more rapidly. This is actually the only definitive risk factor, from what I've read.

Robin s

About Transplantation: organ donation and transplantation

[Guest guest]

I take my second dose of Lasix (furosemide) just before supper, around

17:30, and I usually go within 3-4 hours after that. The effect of Lasix,

for most people, last about 6 hours. It's a very short-acting diuretic,

unlike the ordinary thiazide-type diuretics that are usually prescribed for

high blood pressure (the effect of those pretty much lasts all day).

Pierre

Re: (unknown)

> In a message dated 5/10/01 7:46:37 AM Central Daylight Time,

> dscherer@... writes:

>

>

> > Do you have to take the diuretic at that time or could you take it

earlier

> > in the evening or late afternoon?

>

> No, I don't strictly need to but as a stay-at-home mom, I have more

schedule

> flexibility than many others on the list. This means that I can afford to

be

> up several times a night because I can sleep in. Many others on this list

do

> not have that luxury (can you say health benefits, boys and girls?).

>

> Robin s

>

> <A HREF= " http://www.abouttransplantation.com/ " >About Transplantation:

organ donation and transplantation</A>

>

[Guest guest]

Hi

I've had IgA N for decades, and whenever I get a bad cold or flu, my urine

turns dark brown. Even sometimes when I'm feeling healthy, I'll notice some

slight discolouration. The Nept said it's normal. Apparently I'll slways

have trace amounts of blood, which seem to get worse when I'm feeling sick.

In short, I think it's normal.

Curtis in Ontario, Canada

(unknown)

> >

> >

> > I have an 8 year old son with suspected IGA. They are going to

> > do a biopsy

> > next week to confirm this. His urine has been dark for months

> > and they say

> > that is common with this. My question is for the past 2 days he

> > has had a

> > fever, we think its just the flu nothing related to the kidneys but

>today

> > his fever has went down a little (99.8-100.0) but his urine is

> > BRIGHT red.

> > Is this common? Should I be alarmed, or does the color of urine really

> > matter? We know he has been passing blood and protein its just usually

> > microscopic.

> > Thanks in advance

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at http://explorer.msn.com

> >

> >

> >

> >

[Guest guest]

I'm also among those who never get visible blood in the urine. People like

us usually have the kidney damage creep up on them before any symptoms are

discovered. When I first started having symptoms of blood and protein in the

urine, back in the 70's, there wasn't much that could be done anyway. But

now, with the renal-protective blood pressure drugs we have today, it would

worth catching it as early as possible. My guess would be that most people

who eventually get diagnosed with IgAN but who never showed the tea or

dark-coloured urine probably had the disease developing in there for many

years before symptoms were discovered. In Japan, they actually screen all

schoolchildren for it.

Pierre

Re: (unknown)

> In a message dated 5/10/01 10:55:14 PM Central Daylight Time,

Deenerz@...

> writes:

>

>

> > My own experience was similar to your son. When I had the flu or a bad

cold

> >

>

> I never had that experience. There is a small subset of us with IgAN that

do

> not get blood in the urine for other than normal gynecological causes

(that

> is, when we have our periods). In my individual case, I was putting out up

to

> eight grams of protein in every 24-hour sample of urine, but no blood or

even

> tea-colored urine, just a normal bright yellow when it was concentrated or

> normal blood in the urine whenever I menstruated.

>

> This is a risk factor for all the serious complications I experienced.

This

> small subset of us tends to be sicker when diagnosed (67% of my renal

> function was already gone for good by the time I was diagnosed), and our

> disease progresses is more likely to progress more rapidly. This is

actually

> the only definitive risk factor, from what I've read.

>

> Robin s

> <A HREF= " http://www.abouttransplantation.com/ " >About Transplantation:

organ donation and transplantation</A>

>

[Guest guest]

Hi Clair. Yes, that is an interesting case. There are actually nephrologists

who think that even higher doses of some ACE inibitors that have a special

affinity for tissue, like quinapril, might actually stop the progression of

renal disease, and even reverse it. They believe that while there is no

additional blood pressure lowering, there are continuing greater renal

protective effects with higher doses. Of course, nobody knows what super

high doses of ACE inhibitors might do to us in the longer term, so, as yet,

I don't think any doctors would actually prescribe that. As for combining an

ACE inhibitor with an angiotensin II receptor blocker, one small study is

interesting, but it isn't enough to really go on (as the authors themselves

state).

Pierre

P.S. I wasn't always very good about taking my BP meds either. I am now

though. I have to wonder if my kidney function might not have declined had I

always taken everything as prescribed.

(unknown)

> Hi Pierre, This is not really on the subject of the artice, but I

> thought it might be interesting. When I was diagnosed in October of

> 1996 my protien was at 2.5 grams per day, and my kidney function was

> at 70%. Unfortunately I was not always that good about taking my

> Zestril, (my blood pressure was not really high, so I didn't really

> think it made that much difference). After an episode of almost 8

> grams of protien in my 24 hour urine, I got VERY serious about taking

> the Zestril, and Lasix, and in October of 1998 my function was down

> to 40%, but with no sign of protien in my urine. My doc said the

> protien was perfectly normal. Since then, my function has remained

> at 40%, and my protien is still within the normal range. (I go

> through another round of lab work next week, so hopefully things will

> still be stable. The only difference I can say that I made was to

> take my medication religiously. Hope this helps, Clair

>

>

>

>

[Guest guest]

Hi Clair. I think you can pretty safely assume that being off the fish oil

for 2 weeks won't change a thing in terms of the kidneys. Any positive

effect of fish oil for IgA nephropathy is a long term thing - like over a

year or two. Also, the fatty acids stay in your body for a while, so I

wouldn't worry about that at all.

Serum potassium at 6.5 is a bit elevated, but there are two things to know

about potassium. First of all, a higher level doesn't appear to be harmful

in kidney patients because the person's body has adapted to it being higher

over a period of time. So, it's not really a big, dramatic cause for

concern, unless it were really elevated. Secondly, you can't judge a

person's potassium to be elevated from just one blood test. This is because

it is so easy to get a falsely elevetated reading - like the nurse or

techinician not drawing the blood fast enough while the tourniquet is on. I

once had two dangerously-elevated results in a row. The second one was so

high that my heart should have stopped. Everyone was concerned except my

nephrologist. They both turned out to be false results - a little unlikely

to have two in a row, but it does happen.

Pierre

(unknown)

> Hello everyone,

> I haven't posted here much, but read all the messages every day. I

> had to have surgery two week ago, (a hysterectomy), and my doctor was

> concerned about how my body would handle the surgery with only 40%

> kidney function. The anesthesiologist was concerned that my

> potassium was very high in the lab work done about 4 days earlier(I

> think he said 6.5, does that mean anything?), but by the morning of

> the surgery it had gone down some. He used an I.V. with no postssium

> or sodium. But my recovery went much and faster than anyone

> expected, (especially my Gyn!). I was off all narcotics by the next

> morning. My only problem was extreme nasuea from the anesthesia.

> For almost two weeks I had no real appetite, and stopped taking the

> fish oil for those two weeks. I have only been on them since May,

> and next week will go through the lab work to see how my kidneys are

> doing. I have started back on the fist oil, but will being off them

> for those two weeks change anything? Thanks, Clair

>

>

[Guest guest]

Clair, the normal range for potassium is 3.0-4.5. Yours was quite high. As kidney function goes down, the ability to excrete excess potassium goes down too. Most important at that stage is diet. You should be able to get a brochure from your neph on high potassium foods: avacado, bananas, citrus fruit, salt substitute, green leafy veggies, dairy products, watermelon, tomato sauces and pastes, etc.

Marty

(unknown)

Hello everyone, I haven't posted here much, but read all the messages every day. I had to have surgery two week ago, (a hysterectomy), and my doctor was concerned about how my body would handle the surgery with only 40% kidney function. The anesthesiologist was concerned that my potassium was very high in the lab work done about 4 days earlier(I think he said 6.5, does that mean anything?), but by the morning of the surgery it had gone down some. He used an I.V. with no postssium or sodium. But my recovery went much and faster than anyone expected, (especially my Gyn!). I was off all narcotics by the next morning. My only problem was extreme nasuea from the anesthesia. For almost two weeks I had no real appetite, and stopped taking the fish oil for those two weeks. I have only been on them since May, and next week will go through the lab work to see how my kidneys are doing. I have started back on the fist oil, but will being off them for those two weeks change anything? Thanks, Clair

[Guest guest]

As far as higher levels not being a problem in kidney patients, I wouldn't be too sure. My nutritionist throws a fit if anyone's levels are out of range. When I was predialysis, I had occasional feelings of tingling in my extremities and lips and severe weakness in my legs. Turns out it was due to potassium. It interferes with the heart, so the tingling and weakness comes from poor cardiac output. I have read that sometimes dialysis patients have levels high enough where a normal person's heart would stop (without their heart stopping). I agree about the tourniquet thing. Also, they shouldn't let your blood specimen sit for too long without testing it, the cells begin dumping the intracellur potassium out after a while.

Whenever I go in for surgery, I've had 5 or 6 in the last year, they always check potassium. The surgeon said that if it was too high, they would not do the surgery until after I've been dialyzed to get the level down.

Marty

(unknown)> Hello everyone,> I haven't posted here much, but read all the messages every day. I> had to have surgery two week ago, (a hysterectomy), and my doctor was> concerned about how my body would handle the surgery with only 40%> kidney function. The anesthesiologist was concerned that my> potassium was very high in the lab work done about 4 days earlier(I> think he said 6.5, does that mean anything?), but by the morning of> the surgery it had gone down some. He used an I.V. with no postssium> or sodium. But my recovery went much and faster than anyone> expected, (especially my Gyn!). I was off all narcotics by the next> morning. My only problem was extreme nasuea from the anesthesia.> For almost two weeks I had no real appetite, and stopped taking the> fish oil for those two weeks. I have only been on them since May,> and next week will go through the lab work to see how my kidneys are> doing. I have started back on the fist oil, but will being off them> for those two weeks change anything? Thanks, Clair>>

[Guest guest]

That's not fair - they are most of my favourite foods!

Reply-To: iga-nephropathy

To: <iga-nephropathy >

Subject: Re: (unknown)

Date: Thu, 16 Aug 2001 11:42:47 -0700

Clair, the normal range for potassium is 3.0-4.5. Yours was quite high. As

kidney function goes down, the ability to excrete excess potassium goes down

too. Most important at that stage is diet. You should be able to get a

brochure from your neph on high potassium foods: avacado, bananas, citrus

fruit, salt substitute, green leafy veggies, dairy products, watermelon,

tomato sauces and pastes, etc.

Marty

(unknown)

Hello everyone,

I haven't posted here much, but read all the messages every day. I

had to have surgery two week ago, (a hysterectomy), and my doctor was

concerned about how my body would handle the surgery with only 40%

kidney function. The anesthesiologist was concerned that my

potassium was very high in the lab work done about 4 days earlier(I

think he said 6.5, does that mean anything?), but by the morning of

the surgery it had gone down some. He used an I.V. with no postssium

or sodium. But my recovery went much and faster than anyone

expected, (especially my Gyn!). I was off all narcotics by the next

morning. My only problem was extreme nasuea from the anesthesia.

For almost two weeks I had no real appetite, and stopped taking the

fish oil for those two weeks. I have only been on them since May,

and next week will go through the lab work to see how my kidneys are

doing. I have started back on the fist oil, but will being off them

for those two weeks change anything? Thanks, Clair

[Guest guest]

- I understand the way you feel, but sometimes senseless things

happen. An Australian cultural icon pop star was killed a couple of days

ago out of the blue in a helicoptor crash and we are all in shock wondering

how it it possible that he should be dead. I am a registered organ donor

(even if the kidneys are shot something else may be ok) because if I was to

suddenly die for no good reason like him, I would like something good to

come out of it, and I expect others are the same - it may be the only

worthwhile thing that we do our whole lives. I used to give blood for the

same reason.

From: clairmouton@...

Reply-To: iga-nephropathy

To: iga-nephropathy

Subject: (unknown)

Date: Fri, 31 Aug 2001 02:42:40 -0000

, I think the same thing sometimes. I think it is selfish of me

to take a kidney from someone that is well, and that loves me. Then,

I look at the other side and struggle more with that part. Taking a

kidney from someone who has just died. I know that everyone

says, " Well, if it was their time to die, then someone else might

benefit from that death " . But still, I have a very hard time seeing

it like that. It seems that if I ever have to go on a transplant

list, that somehow, in some way I am hoping and praying for some

young and healthy person to die in of some kind of accident.

Sometimes I wonder if I will ever allow myself to be put on a list

for that reason. I would like to think that if I go on a list and

never get called, then that person who would have beeen an exact

match for me is still alive and well. And, his or parents, spouses,

kids, etc., will never have to go through the pain of losing that

person. I have thought about this alot, and I figure that like

everything else about this illness, God will give me what I need when

I need it. Take care,

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Really good saying in your signature block Eileen. Unfortunately, we didn't

get the actual message part.

Pierre

(unknown)

>

>

>

> =====

> Eileen M. DeHaas " Just cause I'm over the hill doesn't mean I have to roll

down it! "

>

>

[Guest guest]

, you are so right about doctors. I have been battling pleurisy

(diagnosed by xray) now for 3 weeks, possiblely longer, and been put on 3

different antibiotics. I told the GP that I really don't feel well. Blood

pressure was up to 150/113 and I have severe pain in the chest. I have tested

my urine with dip stick and its been protein +++ and blood++++ I have been

put back on atenolol for BP, I am also on steroids for joint pain but they

are not taking the pain away in my chest. He says I have got inflammation

in the sternum so I have been given morphine tablets on top of all this. As

you can imagine I am feeling drugged up to the eyeballs and beginning to

question what my GP is doing. He said that I wasn't ill enough for hospital

because I don't have a temperature. I have only just moved to this GP so he

only knows me for 3 months. Anyway, tonight there is a message to call

surgery tomorrow about my blood test. I just know that my kidney function

has deteroriated because of the way I feel yet he was so laid back and told

me that if I worried about my BP all the time I would never get to sleep at

night. Despite being on 50mg of Atenolol this week my BP is 130/140 over

90/100 so I know my body is struggling to overcome this infection. Welly

guys thats about it so I'll keep you posted as to what happens next. I just

want to get well and get back to work, I have been off now for 3 months

because of one infection after another.

I have no consultant at the moment because of moving but I am due to see my

new one on October 2nd. Between now and then though, I don't really feel

safe with this GP.

Jeanie

[Guest guest]

Jeanie

Sympathies,

I am getting over pleurisy too, and of exactly the same area, it simply does

tire you out. Your story sounds oh

so familiar Jeanie. I would say if

you do not feel comfortable or at ease with this GP, then change him/her to one

that you do feel ok with. When you

are feeling as sick as IGAN/Pleurisy/Infection can make you, you don’t want to feel

unsafe for one, uncared for or not have any understanding. Those figures you mention seem pretty

high to me, and personally I think you need to be seeing a Nephrologist soon, I

am assuming this is on 2/10?

I know the

above is easy for me to write, but I hope you soon start to feel better

Jeannie, and good luck with that GP.

Please

keep us posted on your progress if you want.

Best

wishes

-----Original

Message-----

From: JeaniePC@...

Sent: 13 September 2001 23:11

To: iga-nephropathy

Subject: Re:

(unknown)

, you are so right about doctors. I have been battling

pleurisy

(diagnosed by xray) now for 3 weeks, possiblely longer, and been put on 3

different antibiotics. I told the GP that I really don't feel

well. Blood

pressure was up to 150/113 and I have severe pain in the chest. I have

tested

my urine with dip stick and its been protein +++ and blood++++ I have been

put back on atenolol for BP, I am also on steroids for joint pain but they

are not taking the pain away in my chest. He says I have got

inflammation

in the sternum so I have been given morphine tablets on top of all

this. As

you can imagine I am feeling drugged up to the eyeballs and beginning to

question what my GP is doing. He said that I wasn't ill enough for

hospital

because I don't have a temperature. I have only just moved to this GP

so he

only knows me for 3 months. Anyway, tonight there is a message to

call

surgery tomorrow about my blood test. I just know that my kidney

function

has deteroriated because of the way I feel yet he was so laid back and told

me that if I worried about my BP all the time I would never get to

sleep at

night. Despite being on 50mg of Atenolol this week my BP is 130/140

over

90/100 so I know my body is struggling to overcome this infection.

Welly

guys thats about it so I'll keep you posted as to what happens next.

I just

want to get well and get back to work, I have been off now for 3 months

because of one infection after another.

I have no consultant at the moment because of moving but I am due to see my

new one on October 2nd. Between now and then though, I don't really

feel

safe with this GP.

Jeanie

[Guest guest]

Anything is possible, I guess, but the only association I know of about IgAN

arthritic-like symptoms is when the IgAN takes on some of the features of

HSP.

Pierre

(unknown)

> Hmmm I wonder about this arthriris, because I get that too.Also thats

> not the only thing I also experience paraesthesias ie strange

> superficial sensations.Has anyone else with IgA nephropathy

> expereinced such symptoms.Is it possible that the antigen responsible

> for arthritis etc is also the trigger for occurence of IgA

> nephropathy, or is it that the IgA having taken a different shape now

> starts to cause arthralgias and inflamation of nerve cells.? Anyone

> wants to shed some light on this.

>

>

>

>

[Guest guest]

In alternative medicine, a holistic approach to healing recognizes that the emotional, mental, spiritual and physical elements of each person comprise a system, and attempts to treat the whole person, concentrating on the cause of the illness as well as symptoms. Examples of such holistic therapies include Acupuncture, Ayurveda, Chinese medicine, Indian Head Massage, Qi Gong (a.k.a. Vapor Acheivement, Chi King, Ki Kung, Qi Queng), Reiki, IRECA method, and Reflexology. They usually do not originate from the western medical-scientific tradition End stage is just a set of numbers. You can still feel good and do things. My 6 minute walk with no O2 would be in the 70s and my P is 53 mm Hg but so what I am still here and dong my thing everyday put slowly P UIP 8/00 End stage IPF subjects, defined by the presence of at least two of the following:• TLC <45% of predicted • Single-breath carbon monoxide diffusing capacity of the lung (DLCO), corrected for hemoglobin, <30% of predicted • Resting P(A-a) gradient >30 mm Hg • O2 desaturation <80% with exercise (walking on level

ground at own pace for 6 minutes) anne wolf wrote: Hi there, I would like to understand more about what "end stage" means. Also, can you elaborate on "holistic approach" to management? thanks, anne (dad ipf 03/06) ----- Original

Message ----- From: l e To: Breathe-Support Sent: Tuesday, August 29, 2006 10:53 AM Subject: (unknown) Hi: This is new to me so please be patient. My husband has pulmonary fibrosis, he was diagnosed in 1999. He was doing great then in May he was hospitalized with encephalitis. Then 3 weeks ago he was doing great mowed lawn etc then spiked a 104 temp and ended up in intensive care with they believe pneumonia. Thank God he is getting better each day and xrays are improving each time. They say it is

end stage at first the term freaked me out however I am understanding the term better. Any tips I would appreciate. Does anyone go with the holistic approach also? Please help. Thank you Get your email and more, right on the new Yahoo.com

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.

[Guest guest]

thanks for clarifying john,

i don't much care for the term "end stage" though!

how much 02 are you on at rest and on exertion?

anne (dad ipf 03/06)

(unknown)

Hi: This is new to me so please be patient. My husband has pulmonary fibrosis, he was diagnosed in 1999. He was doing great then in May he was hospitalized with encephalitis. Then 3 weeks ago he was doing great mowed lawn etc then spiked a 104 temp and ended up in intensive care with they believe pneumonia. Thank God he is getting better each day and xrays are improving each time. They say it is end stage at first the term freaked me out however I am understanding the term better. Any tips I would appreciate. Does anyone go with the holistic approach also? Please help.

Thank you

Get your email and more, right on the new Yahoo.com

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.

[Guest guest]

I am on 4 LPM at home and 6 LPM on the treadmill at rehab P UIP 8/00 o2 8/04 58yoanne wolf wrote: thanks for clarifying john, i don't much care for the term "end stage" though! how much 02 are you on at rest and on exertion? anne (dad ipf 03/06) ----- Original

Message ----- From: To: Breathe-Support Sent: Tuesday, August 29, 2006 8:17 PM Subject: Re: (unknown) In alternative medicine, a holistic approach to healing recognizes that the emotional, mental, spiritual and physical elements of each person comprise a system, and attempts to treat the whole person, concentrating on the cause of the illness as well as symptoms. Examples of such holistic therapies include Acupuncture, Ayurveda, Chinese medicine, Indian Head Massage, Qi Gong (a.k.a. Vapor Acheivement, Chi King, Ki Kung, Qi Queng), Reiki, IRECA method, and Reflexology. They usually do not originate from the western medical-scientific tradition End stage is just a set of numbers. You can still feel good and do things. My 6

minute walk with no O2 would be in the 70s and my P is 53 mm Hg but so what I am still here and dong my thing everyday put slowly P UIP 8/00 End stage IPF subjects, defined by the presence of at least two of the following:• TLC <45% of predicted • Single-breath carbon monoxide diffusing capacity of the lung (DLCO), corrected for hemoglobin, <30% of predicted • Resting P(A-a) gradient >30 mm Hg • O2 desaturation <80% with exercise (walking on level ground at own pace for 6 minutes) anne wolf <annewolfrogers> wrote: Hi there, I would like to understand more about what

"end stage" means. Also, can you elaborate on "holistic approach" to management? thanks, anne (dad ipf 03/06) (unknown) Hi: This is new to me so please be patient. My husband has pulmonary fibrosis, he was diagnosed in 1999. He was doing great then in May he was hospitalized

with encephalitis. Then 3 weeks ago he was doing great mowed lawn etc then spiked a 104 temp and ended up in intensive care with they believe pneumonia. Thank God he is getting better each day and xrays are improving each time. They say it is end stage at first the term freaked me out however I am understanding the term better. Any tips I would appreciate. Does anyone go with the holistic approach also? Please help. Thank you Get your email and more, right on the new Yahoo.com Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.

Get your email and more, right on the new Yahoo.com

[Guest guest]

My husband is on prednesone. Does anyone take or know anything about coq10? What amount should you take etc. also what about flax seed oil I heard that was good. I heard it is great for building up the immune system. I am confused about these things called immune suppressants Please educate me and any info on vitamins.

Strange you should mention flax seed oil. My best friend in East Texas, called me from the GNC Store. Said the manager of that store mentioned that flaxen seed oil, mixed w/yogurt or cottage cheese created something like "interferon-gamma-1B," (actimmune) a promising treatment for this disease. I said that sounds to easy. and my friend was skeptical. Well the manager got the nutritionist on the phone to talk to my friend. And she confirmed it. Go figure. What brought it up was...my friend picked up some NAC for me there...and the mgr. inquired about it. So my friend explained about the ipf that I suffer with. I know it makes no sense...from $5,000.00 a month to a dab of this mixed with that. I am including a link that may help answer your questions. Its about natural solutions to the disease. Not sure how accurate it is, but weigh everything out. Someone sent it to me a while back.

How To Improve And Even Beat Pulmonary Fibrosis

kiss kiss,

~Ginger~

9/04 ipf

[Guest guest]

Welcome Bronagh and . Sorry we meet on boards such as this but you will be glad you are here.

There are many here who are more experienced than I who can give you good information.

Early on (I was diagnosed May this year) I had the coughing and phlegm but Dr. put me on NAC (N-Acetylcysteine) and it cleared it up. I seldom cough now, and have no phlegm.

Good wishes and God Bless you both.

Sher ipf 5-06

(unknown)

HI,My name is Bronagh and my Mum was diagnosed with IPF about 12 months ago, her name is . She is not familiar with computers so I am posting this meassage on her behalf. It has been very helpful reading all your messages and information, you seem to have really done your homework on this. We do not have a lot of information on IPF and as we live in the UK we are not finding it easy to get information. I have read alot about breathlessness and how difficult that can be, but Mum finds it very difficult to live with the cough she is experiencing, it is quite incapacitating - is this a common problem ?- it is not a dry cough as I have read about, but it is a cough with alot of clear fleghm. Does any oe else experience this and do you know of any way to make the cough easier?. Thanks.

[Guest guest]

Hi Bronagh & , Welcome to our support / survival board. You will find out so much from this wonderful group. A lot of us just could not stay sane without each other.

I take NAC but do not have the cough. From time to time I do get a little phlegm so my Dr wants me on it. I am loosing some weight (20 more to go) then I will be evaluated for a transplant. Tell your Mum to keep living her life. She does still have a lot to do.

God Bless you for being such a God Sent daughter

Love and Prayers, Peggy 9/04 ipf

HI,

My name is Bronagh and my Mum was diagnosed with IPF about 12 months

ago, her name is . She is not familiar with computers so I am

posting this meassage on her behalf. It has been very helpful reading

all your messages and information, you seem to have really done your

homework on this. We do not have a lot of information on IPF and as we

live in the UK we are not finding it easy to get information. I have

read alot about breathlessness and how difficult that can be, but Mum

finds it very difficult to live with the cough she is experiencing, it

is quite incapacitating - is this a common problem ?- it is not a dry

cough as I have read about, but it is a cough with alot of clear

fleghm. Does any oe else experience this and do you know of any way to

make the cough easier?. Thanks.

[Guest guest]

Hello Joyce

Thank you so much for reading and responding to my message. I really appreciate it. Here is the scoop of me:

Four years ago, the doctors finally made a diagnosis for me, after many bronchoscopies and a lung biopsy. They said it was Non specific interstitial pulmonary disease. I was put on Prednisone for over a year (lots of side effects). Then, after that was over, began Gamma Gamma shots. I was still able to disguise my disease by wearing long skirts to hide my swollen legs. Anyway, for a while it was alright. I coughed alot but could also handle that. Four months ago, I got much worse. Swelling very badly, lots and lots of coughing but most of all, I got out of breath so easily. I quit work two months ago because I didnt have enough breath to walk much. Legs worked...lungs didnt. The pulmonary doctor now says I am in the end stages and suggested I "get things in order". I was denied at the respiratory exercise clinic because I was "medically unstable". Last weekend I was put in the hospital for a heart cath and determined the level of my pulmonary hypertension. I was diuresed and that helped but after two days at home, the fluid has built back up. And yes, I have been on oxygen therapy, 24/7 for the last six weeks. I guess I am just feeling really dejected. I need to know that it will get better.

Also, I was told by the pulmonologist that finding a lung for transplantation was like winning the lottery..very unlikely.

It appears there is no hope...and I need hope.

Thanks again for listening.

(unknown)

Hello ,

Welcome to our group. I am sorry that you find yourself so sick. Have you gone to a good teaching hospital for transplant evaluation, yet? Are you on oxygen, yet? Has your doctor mentioned rehab to you yet? What is your actual diagnosis?

, we all relate. We have all been through the same stages of denial and fear. We have all grieved the loss of our health. We all suffer. We all need each other.

Ask us anything? There are many here who are professional medical people and many who have fought the fight for a long time. We are happy to help. You will be able to help us in return.

You are among friends.

Hugs, Joyce PF 1997>> Hello> I am new to this site. I guess I need to talk to other people who have breathing issues. I was just discharged from the hospital yesterday due to pulmonary hypertension due to my pulmonary fibrosing. I had a heart cath. Anyway, my heart is fine..lungs are terrible. Was told there was nothing else to be done for me. I have been told I should have beenput on the lung transplant list when first diagnosed but I didnt. Prognosis is not good. Does anyone have any positive news about this disease? I have so many questions. Can anyone relate? I am starting to get SOB even when not exerting. Guess I just needed to talk. If anyone listened to me....thanks.>

[Guest guest]

,

During the time you worked and did not have oxygen, were you short of breath? Did the doc (during this time) do six minute walk testing for your 02 stats? When I worked I would walk down the hall and have to stop and lean on the wall....or be talking and have to stop to recoup and get my breath. Yet, no one was taking stats. During the time I was being misdiagnosed, I was getting x-rays and they were telling me that it was 'foggy' and even diagnosed TB once (without test results) after a bronchoscoppy...but no oximeter. I took tons of antibiotics for continuous infections and other symptoms. Until I went to my current pulmonary doctor, I did not get proper help. Then after a couple of years of seeing him, my insurance changed and I was referred to another doc...who almost killed me! I finally got back in to see the 'good' doc and he saved my life. He really takes good care of me.

I said all this so that you would know that getting lousy medical care for PF is not uncommon. A lot of us here have horror stories. If you feel strongly about transplant....go for it. Go to a teaching hospital and be evaluated. There are hospitals..such as Duke and Jewish in St. Louis that are doing a LOT of lung transplants now. And they and others take difficult cases. I went to , but was rejected for other health reasons.

The docs also have told me that I was in 'end' stage. It is simply a medical term. PH does make it much more dangerous but is to be expected in late stages. Try not to get in 'the hole'. Been there, still do that. So do we all. Trust in God to always be there for you. He is as close as the air in front of you.

Always know that we will be with you in spirit. We understand. Stay with us so that we can learn from each other and lend support.

Hugs and many prayers,

Joyce PF 1997> >> > Hello> > I am new to this site. I guess I need to talk to other people who have breathing issues. I was just discharged from the hospital yesterday due to pulmonary hypertension due to my pulmonary fibrosing. I had a heart cath. Anyway, my heart is fine..lungs are terrible. Was told there was nothing else to be done for me. I have been told I should have beenput on the lung transplant list when first diagnosed but I didnt. Prognosis is not good. Does anyone have any positive news about this disease? I have so many questions. Can anyone relate? I am starting to get SOB even when not exerting. Guess I just needed to talk. If anyone listened to me....thanks.> >>