Re: I am so sick of this cough

[Guest guest]

,

I am glad that you landed here. Several of us, myself included, struggled with serious disease of one sort or another before being diagnosed with Interstitial Lung Disease. It seems that the lungs are affected by many diseases and by some medications. Once scarring begins, it is a forever battle.

Find yourself a pulmonologist who specializes in interstitial lung diseases, preferably at a University center. Even thought there is no known cure and very little treatment, these centers will treat symptoms to improve quality of life. They also work to get you stable. Stable is a beautiful word to us. They are also up on the latest medical trials. It may mean a little travel, but once evaluated, you can still see a hometown doctor who will work with these experts. That and keeping your body healthy through rehab, etc. is your best bet.

You have really been round the bend with serious illness. You must be a fighter! To have survived all of this is a real feat.

There are a few people on our group with medical background, but most of us are just patients. Most very sick. We will help you in anyway possible. In turn, you can help us. We learn so much from each other.

The cough! I hate it! I use Tessalon Pearles (prescription). That helps a little. Breathing hot water with oil of eucalyptus helps a little. Nebulizers help a little. Codeine helps a lot (docs usually don't like to prescribe it). The cough is exhausting and embarrassing. I would love to know how to stop it!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> I am new to the this forum and have never posted before. I am hoping > to see if my issues sound familiar and if others are experiencing > what I am. I apologize up front for the coming long post.> > 14 years ago (I know its been a long time) I was diagnosed as having > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't > diagnosed until I was in the terminal stages with all my organs > failing. I spent a month on life support and had many many bad > things happen including a stroke, ARDS, septic shock, etc.. The list > is long. > > Somehow I experienced a miracle and survived this ordeal. Went thru > a traditional regiment of CHOP + Bleomycin for several rounds. I > went into complete remission after my 5th round. > > A year after this I was told that I had to have a Bone Marrow > Transplant to prevent my kind of lymphoma from coming back. So I > went ahead with this. Part of my treatment was total body > irradiation (TBI).> > So since then I have led a very normal life except for a couple of > things. I don't have the long capacity that I used to and I have > this incredible recurring cough. > > I was diagnosed about 7 year ago as having moderate restrictive lung > disease. Not a lot was done then. Given what I had gone through I > didn't pay much attention to this.> > The problems that I have is that A) when doing anything aerobic I run > out of air fairly quickly. Cycling is a huge sport where I live and > I have tried to ride at lunch with the semi-serious group. I can > keep up well for 4-5 miles but I simply run out of air. I have come > to live with this and move on at my own pace. The more annoying > problem is this cough. I get this recurring dry cough that can last > anywhere from 1 to 3 weeks. I am on week 3 of a cough right now. I > went to my doc at the beginning of this cycle to get the usual > narcotic cough syrup. I have since run out. I didn't sleep at all > last night and right now doesn't look promising for tonight. > > I am so sick of this cycle that I can scream. I hate the normal > routine of cough syrup but hate the lack of sleep even more. It > seems like I cough hard every 30 seconds or so. I get > embarrassed going to the doc when this cycle starts. Seems like with > all the prescription abuse going on they seem to think anyone who> shows up as often as I do must have a problem. I am epecially > annoyed with my current internal doc as I had to direct him to do > some additional pulmonary testing to confirm that something wasn't > right. > > If only they knew how much I HATE this cycle. It hurts all aspects of > my life. I simply am sick of coughing. > > I know that many people here are fighing much worse issues than I > am. I wish them the best.> > >

[Guest guest]

,

Boy you have been through the mill haven't you? It's amazing what our bodies and spirits can tolerate and we still keep popping up for more.

Congratulations on remaining so active and taking good care of yourself. In the long run that will make a tremendous difference in the quality of your life. I'm sure it does already.

I have also suffered with that horrible dry hacking relentless cough. My doctor put me on Advair 250/50 twice a day to control it. (No I don't have asthma) It works for me but my best suggestion would echo what Joyce said. Get yourself to a specialist in interstitial lung disease. You don't say where you live but there are university hospitals all over the country with specialists you can contact. Your internist is probably a wonderful doctor but I feel confident in saying it is unlikely he sees enough of this type of lung disease to be able to help you properly.

Please let us know if there is anything we can help you with. We're here and we "get it".

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

I am so sick of this cough

I am new to the this forum and have never posted before. I am hoping to see if my issues sound familiar and if others are experiencing what I am. I apologize up front for the coming long post.14 years ago (I know its been a long time) I was diagnosed as having Stage 4 T-cell Lymphoma. The bad thing was that this wasn't diagnosed until I was in the terminal stages with all my organs failing. I spent a month on life support and had many many bad things happen including a stroke, ARDS, septic shock, etc.. The list is long. Somehow I experienced a miracle and survived this ordeal. Went thru a traditional regiment of CHOP + Bleomycin for several rounds. I went into complete remission after my 5th round. A year after this I was told that I had to have a Bone Marrow Transplant to prevent my kind of lymphoma from coming back. So I went ahead with this. Part of my treatment was total body

irradiation (TBI).So since then I have led a very normal life except for a couple of things. I don't have the long capacity that I used to and I have this incredible recurring cough. I was diagnosed about 7 year ago as having moderate restrictive lung disease. Not a lot was done then. Given what I had gone through I didn't pay much attention to this.The problems that I have is that A) when doing anything aerobic I run out of air fairly quickly. Cycling is a huge sport where I live and I have tried to ride at lunch with the semi-serious group. I can keep up well for 4-5 miles but I simply run out of air. I have come to live with this and move on at my own pace. The more annoying problem is this cough. I get this recurring dry cough that can last anywhere from 1 to 3 weeks. I am on week 3 of a cough right now. I went to my doc at the beginning of this cycle to get the usual

narcotic cough syrup. I have since run out. I didn't sleep at all last night and right now doesn't look promising for tonight. I am so sick of this cycle that I can scream. I hate the normal routine of cough syrup but hate the lack of sleep even more. It seems like I cough hard every 30 seconds or so. I get embarrassed going to the doc when this cycle starts. Seems like with all the prescription abuse going on they seem to think anyone whoshows up as often as I do must have a problem. I am epecially annoyed with my current internal doc as I had to direct him to do some additional pulmonary testing to confirm that something wasn't right. If only they knew how much I HATE this cycle. It hurts all aspects of my life. I simply am sick of coughing. I know that many people here are fighing much worse issues than I am. I wish them the

best.

[Guest guest]

....There are others here who write about coughing too. I know they will respond to you. I don't have that problem now. I did when I was first diagnosed (Dx). Dr put me on NAC (N Acetyl Cistiene). Many here on the board use NAC...it's good for mucus/coughing. But that was when my cough was not so bad. But you can check it out on www.puritansales.com

It's a supplement, can't hurt you and it's very inexpensive.

I'm sorry your life has and is changing so much. We all experience the same thing and lack of sleep makes everything worse doesn't it.

Sounds like Dr hasn't helped much yet....??

What state are you in? Married?

Let us know how it goes.........

And welcome.

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

I am so sick of this cough

I am new to the this forum and have never posted before. I am hoping to see if my issues sound familiar and if others are experiencing what I am. I apologize up front for the coming long post.14 years ago (I know its been a long time) I was diagnosed as having Stage 4 T-cell Lymphoma. The bad thing was that this wasn't diagnosed until I was in the terminal stages with all my organs failing. I spent a month on life support and had many many bad things happen including a stroke, ARDS, septic shock, etc.. The list is long. Somehow I experienced a miracle and survived this ordeal. Went thru a traditional regiment of CHOP + Bleomycin for several rounds. I went into complete remission after my 5th round. A year after this I was told that I had to have a Bone Marrow Transplant to prevent my kind of lymphoma from coming back. So I went ahead with this. Part of my treatment was total body irradiation (TBI).So since then I have led a very normal life except for a couple of things. I don't have the long capacity that I used to and I have this incredible recurring cough. I was diagnosed about 7 year ago as having moderate restrictive lung disease. Not a lot was done then. Given what I had gone through I didn't pay much attention to this.The problems that I have is that A) when doing anything aerobic I run out of air fairly quickly. Cycling is a huge sport where I live and I have tried to ride at lunch with the semi-serious group. I can keep up well for 4-5 miles but I simply run out of air. I have come to live with this and move on at my own pace. The more annoying problem is this cough. I get this recurring dry cough that can last anywhere from 1 to 3 weeks. I am on week 3 of a cough right now. I went to my doc at the beginning of this cycle to get the usual narcotic cough syrup. I have since run out. I didn't sleep at all last night and right now doesn't look promising for tonight. I am so sick of this cycle that I can scream. I hate the normal routine of cough syrup but hate the lack of sleep even more. It seems like I cough hard every 30 seconds or so. I get embarrassed going to the doc when this cycle starts. Seems like with all the prescription abuse going on they seem to think anyone whoshows up as often as I do must have a problem. I am epecially annoyed with my current internal doc as I had to direct him to do some additional pulmonary testing to confirm that something wasn't right. If only they knew how much I HATE this cycle. It hurts all aspects of my life. I simply am sick of coughing. I know that many people here are fighing much worse issues than I am. I wish them the best.

[Guest guest]

You have had areal real tough time for 14 years!!there some on board

who have gone through really bad experiences so, you have come to

the right place , you will find plenty of support and help here you

can ask any question and there will someone with an answer, you get

to read jolly exchanges as also weary tales, Joyce has already

written what needs to be said , so feel frre to share your

troubles.All the best,

Geeta

- In Breathe-Support , " esolds " wrote:

>

> I am new to the this forum and have never posted before. I am

hoping

> to see if my issues sound familiar and if others are experiencing

> what I am. I apologize up front for the coming long post.

>

> 14 years ago (I know its been a long time) I was diagnosed as

having

> Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> diagnosed until I was in the terminal stages with all my organs

> failing. I spent a month on life support and had many many bad

> things happen including a stroke, ARDS, septic shock, etc.. The

list

> is long.

>

> Somehow I experienced a miracle and survived this ordeal. Went

thru

> a traditional regiment of CHOP + Bleomycin for several rounds. I

> went into complete remission after my 5th round.

>

> A year after this I was told that I had to have a Bone Marrow

> Transplant to prevent my kind of lymphoma from coming back. So I

> went ahead with this. Part of my treatment was total body

> irradiation (TBI).

>

> So since then I have led a very normal life except for a couple of

> things. I don't have the long capacity that I used to and I have

> this incredible recurring cough.

>

> I was diagnosed about 7 year ago as having moderate restrictive

lung

> disease. Not a lot was done then. Given what I had gone through

I

> didn't pay much attention to this.

>

> The problems that I have is that A) when doing anything aerobic I

run

> out of air fairly quickly. Cycling is a huge sport where I live

and

> I have tried to ride at lunch with the semi-serious group. I can

> keep up well for 4-5 miles but I simply run out of air. I have

come

> to live with this and move on at my own pace. The more annoying

> problem is this cough. I get this recurring dry cough that can

last

> anywhere from 1 to 3 weeks. I am on week 3 of a cough right now.

I

> went to my doc at the beginning of this cycle to get the usual

> narcotic cough syrup. I have since run out. I didn't sleep at

all

> last night and right now doesn't look promising for tonight.

>

> I am so sick of this cycle that I can scream. I hate the normal

> routine of cough syrup but hate the lack of sleep even more. It

> seems like I cough hard every 30 seconds or so. I get

> embarrassed going to the doc when this cycle starts. Seems like

with

> all the prescription abuse going on they seem to think anyone who

> shows up as often as I do must have a problem. I am epecially

> annoyed with my current internal doc as I had to direct him to do

> some additional pulmonary testing to confirm that something wasn't

> right.

>

> If only they knew how much I HATE this cycle. It hurts all aspects

of

> my life. I simply am sick of coughing.

>

> I know that many people here are fighing much worse issues than I

> am. I wish them the best.

>

>

>

[Guest guest]

Joyce,

Thanks for the reply. I have been dealing with this for so long and

not really knowing anyone else that has something similar that at

times I would begin to think I was crazy with this stupid cough. It

has been a real boost to have encouraging responses so quickly from

people who understand what this is like.

The theory is that my issues are related to the chemo drug Bleomycin

and/or the radiation I got during transplant.

Despite how badly I hate this cough I still feel very fortunate to

have survived my cancer battle. Given that at one point I was given

a 5% chance of surviving another 24 hours, I look at this as a small

price to pay. Still doesn't mean I can't try to beat this cough!

The good news is that I live in the Colorado front range. Today

Jewish National called me and has set appointments with a

pulmonologist to start working on this. Looks like more tests (which

I am happy about at this point). The local impression is that Jewish

National is supposed to be one of the best pulmonary centers in the

world. Hope it is true.

Good luck with your lung issues. Doesn't it seem unfair to have to

deal with the lung issues after having had to deal with another

serious issue?

Thanks again,

> >

> > I am new to the this forum and have never posted before. I am

hoping

> > to see if my issues sound familiar and if others are experiencing

> > what I am. I apologize up front for the coming long post.

> >

> > 14 years ago (I know its been a long time) I was diagnosed as

having

> > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> > diagnosed until I was in the terminal stages with all my organs

> > failing. I spent a month on life support and had many many bad

> > things happen including a stroke, ARDS, septic shock, etc.. The

list

> > is long.

> >

> > Somehow I experienced a miracle and survived this ordeal. Went

thru

> > a traditional regiment of CHOP + Bleomycin for several rounds. I

> > went into complete remission after my 5th round.

> >

> > A year after this I was told that I had to have a Bone Marrow

> > Transplant to prevent my kind of lymphoma from coming back. So I

> > went ahead with this. Part of my treatment was total body

> > irradiation (TBI).

> >

> > So since then I have led a very normal life except for a couple of

> > things. I don't have the long capacity that I used to and I have

> > this incredible recurring cough.

> >

> > I was diagnosed about 7 year ago as having moderate restrictive

lung

> > disease. Not a lot was done then. Given what I had gone through I

> > didn't pay much attention to this.

> >

> > The problems that I have is that A) when doing anything aerobic I

run

> > out of air fairly quickly. Cycling is a huge sport where I live

and

> > I have tried to ride at lunch with the semi-serious group. I can

> > keep up well for 4-5 miles but I simply run out of air. I have

come

> > to live with this and move on at my own pace. The more annoying

> > problem is this cough. I get this recurring dry cough that can

last

> > anywhere from 1 to 3 weeks. I am on week 3 of a cough right now. I

> > went to my doc at the beginning of this cycle to get the usual

> > narcotic cough syrup. I have since run out. I didn't sleep at all

> > last night and right now doesn't look promising for tonight.

> >

> > I am so sick of this cycle that I can scream. I hate the normal

> > routine of cough syrup but hate the lack of sleep even more. It

> > seems like I cough hard every 30 seconds or so. I get

> > embarrassed going to the doc when this cycle starts. Seems like

with

> > all the prescription abuse going on they seem to think anyone who

> > shows up as often as I do must have a problem. I am epecially

> > annoyed with my current internal doc as I had to direct him to do

> > some additional pulmonary testing to confirm that something wasn't

> > right.

> >

> > If only they knew how much I HATE this cycle. It hurts all

aspects of

> > my life. I simply am sick of coughing.

> >

> > I know that many people here are fighing much worse issues than I

> > am. I wish them the best.

> >

> >

> >

>

[Guest guest]

Beth,

Thanks for your reply to my too long post. As I replied to Joyce,

having others speak up with similar issues is very helpful. As you

mention I don't think the typical internal med doc sees enough of

this to really be effective.

I did try Advair a while back but it gave me an excruciating headache

so I stopped. Tried Albuterol and now Xopenex but haven't seen much

help from these either. One time on a business trip to Minneapolis I

had a coughing attack. Didn't have anything effective with me.

Picked up a bottle of 44D in a local store. Drank the whole thing

thru the night trying to stop the cough. As I'm sure you can guess

it didn't do a thing. Another great memory is flying back to Japan

during an attack. 13 hours of rapid fire coughing. I had the only

empty seat on the plane next to me. By the time we landed I think

that I had hundreds of people hating me!

As I mentioned to Joyce, I have an appt coming up at a local

pulmonary center. I am actually really excited to get this underway.

Thanks again,

>

> ,

> Boy you have been through the mill haven't you? It's amazing what

our bodies and spirits can tolerate and we still keep popping up for

more.

> Congratulations on remaining so active and taking good care of

yourself. In the long run that will make a tremendous difference in

the quality of your life. I'm sure it does already.

> I have also suffered with that horrible dry hacking relentless

cough. My doctor put me on Advair 250/50 twice a day to control it.

(No I don't have asthma) It works for me but my best suggestion would

echo what Joyce said. Get yourself to a specialist in interstitial

lung disease. You don't say where you live but there are university

hospitals all over the country with specialists you can contact. Your

internist is probably a wonderful doctor but I feel confident in

saying it is unlikely he sees enough of this type of lung disease to

be able to help you properly.

> Please let us know if there is anything we can help you with. We're

here and we " get it " .

>

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

>

>

>

>

> I am so sick of this cough

>

> I am new to the this forum and have never posted before. I am

hoping

> to see if my issues sound familiar and if others are experiencing

> what I am. I apologize up front for the coming long post.

>

> 14 years ago (I know its been a long time) I was diagnosed as

having

> Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> diagnosed until I was in the terminal stages with all my organs

> failing. I spent a month on life support and had many many bad

> things happen including a stroke, ARDS, septic shock, etc.. The

list

> is long.

>

> Somehow I experienced a miracle and survived this ordeal. Went thru

> a traditional regiment of CHOP + Bleomycin for several rounds. I

> went into complete remission after my 5th round.

>

> A year after this I was told that I had to have a Bone Marrow

> Transplant to prevent my kind of lymphoma from coming back. So I

> went ahead with this. Part of my treatment was total body

> irradiation (TBI).

>

> So since then I have led a very normal life except for a couple of

> things. I don't have the long capacity that I used to and I have

> this incredible recurring cough.

>

> I was diagnosed about 7 year ago as having moderate restrictive

lung

> disease. Not a lot was done then. Given what I had gone through I

> didn't pay much attention to this.

>

> The problems that I have is that A) when doing anything aerobic I

run

> out of air fairly quickly. Cycling is a huge sport where I live and

> I have tried to ride at lunch with the semi-serious group. I can

> keep up well for 4-5 miles but I simply run out of air. I have come

> to live with this and move on at my own pace. The more annoying

> problem is this cough. I get this recurring dry cough that can last

> anywhere from 1 to 3 weeks. I am on week 3 of a cough right now. I

> went to my doc at the beginning of this cycle to get the usual

> narcotic cough syrup. I have since run out. I didn't sleep at all

> last night and right now doesn't look promising for tonight.

>

> I am so sick of this cycle that I can scream. I hate the normal

> routine of cough syrup but hate the lack of sleep even more. It

> seems like I cough hard every 30 seconds or so. I get

> embarrassed going to the doc when this cycle starts. Seems like

with

> all the prescription abuse going on they seem to think anyone who

> shows up as often as I do must have a problem. I am epecially

> annoyed with my current internal doc as I had to direct him to do

> some additional pulmonary testing to confirm that something wasn't

> right.

>

> If only they knew how much I HATE this cycle. It hurts all aspects

of

> my life. I simply am sick of coughing.

>

> I know that many people here are fighing much worse issues than I

> am. I wish them the best.

>

>

>

[Guest guest]

Hi ,

What a long tough road you've been travelling...my solution to the nasty dry cough is a BIT unorthodox & very intoxicating BUT it works for me.....Stone's Green Ginger Wine.....

Good luck with your upcoming visit to JewishNational ....

I live in Australia & we're often a bit unorthodox Downunder....goes with the Territory as they say!

in Oz

> >> > ,> > Boy you have been through the mill haven't you? It's amazing what > our bodies and spirits can tolerate and we still keep popping up for > more. > > Congratulations on remaining so active and taking good care of > yourself. In the long run that will make a tremendous difference in > the quality of your life. I'm sure it does already. > > I have also suffered with that horrible dry hacking relentless > cough. My doctor put me on Advair 250/50 twice a day to control it. > (No I don't have asthma) It works for me but my best suggestion would > echo what Joyce said. Get yourself to a specialist in interstitial > lung disease. You don't say where you live but there are university > hospitals all over the country with specialists you can contact. Your > internist is probably a wonderful doctor but I feel confident in > saying it is unlikely he sees enough of this type of lung disease to > be able to help you properly.> > Please let us know if there is anything we can help you with. We're > here and we "get it".> > > > Beth > > Age 48 Fibrotic NSIP 06/06> > > > Change everything. Love and Forgive > > > > > > > > > > > > I am so sick of this cough> > > > I am new to the this forum and have never posted before. I am > hoping > > to see if my issues sound familiar and if others are experiencing > > what I am. I apologize up front for the coming long post.> > > > 14 years ago (I know its been a long time) I was diagnosed as > having > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't > > diagnosed until I was in the terminal stages with all my organs > > failing. I spent a month on life support and had many many bad > > things happen including a stroke, ARDS, septic shock, etc.. The > list > > is long. > > > > Somehow I experienced a miracle and survived this ordeal. Went thru > > a traditional regiment of CHOP + Bleomycin for several rounds. I > > went into complete remission after my 5th round. > > > > A year after this I was told that I had to have a Bone Marrow > > Transplant to prevent my kind of lymphoma from coming back. So I > > went ahead with this. Part of my treatment was total body > > irradiation (TBI).> > > > So since then I have led a very normal life except for a couple of > > things. I don't have the long capacity that I used to and I have > > this incredible recurring cough. > > > > I was diagnosed about 7 year ago as having moderate restrictive > lung > > disease. Not a lot was done then. Given what I had gone through I > > didn't pay much attention to this.> > > > The problems that I have is that A) when doing anything aerobic I > run > > out of air fairly quickly. Cycling is a huge sport where I live and > > I have tried to ride at lunch with the semi-serious group. I can > > keep up well for 4-5 miles but I simply run out of air. I have come > > to live with this and move on at my own pace. The more annoying > > problem is this cough. I get this recurring dry cough that can last > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right now. I > > went to my doc at the beginning of this cycle to get the usual > > narcotic cough syrup. I have since run out. I didn't sleep at all > > last night and right now doesn't look promising for tonight. > > > > I am so sick of this cycle that I can scream. I hate the normal > > routine of cough syrup but hate the lack of sleep even more. It > > seems like I cough hard every 30 seconds or so. I get > > embarrassed going to the doc when this cycle starts. Seems like > with > > all the prescription abuse going on they seem to think anyone who> > shows up as often as I do must have a problem. I am epecially > > annoyed with my current internal doc as I had to direct him to do > > some additional pulmonary testing to confirm that something wasn't > > right. > > > > If only they knew how much I HATE this cycle. It hurts all aspects > of > > my life. I simply am sick of coughing. > > > > I know that many people here are fighing much worse issues than I > > am. I wish them the best.> > > > > >>

[Guest guest]

Thanks for the reply! I haven't heard of NAC but I think I will try

it out. As I mentioned in a previous reply, I have always regarded

my lung issues as a small price to pay for surviving my cancer

ordeal. Still I am frustrated after so many years of coughing and

coughing and ....

I live in Fort , Colorado. Right down the road in Denver is

the Jewish National pulmonary center. They have convniced us locals

that they are among the best around. I really hope so. Today they

called with a round of appointments and tests. After so long with

this frustration I am really looking forward to this.

I've been really fortunate to have a wonderful wife. She has been

very supportive from the very beginning when I crashed on a business

trip to Austin in 1994. I think all of this has been harder on her.

I was in a induced coma during the worst 27 days of my cancer

battle. Now she doesn't sleep when I have a coughing attack.

Thanks again for you support. This board has already been a real

boost.

>

> ....There are others here who write about coughing too. I know

they will respond to you. I don't have that problem now. I did when I

was first diagnosed (Dx). Dr put me on NAC (N Acetyl Cistiene). Many

here on the board use NAC...it's good for mucus/coughing. But that

was when my cough was not so bad. But you can check it out on

www.puritansales.com

> It's a supplement, can't hurt you and it's very inexpensive.

> I'm sorry your life has and is changing so much. We all experience

the same thing and lack of sleep makes everything worse doesn't it.

> Sounds like Dr hasn't helped much yet....??

> What state are you in? Married?

> Let us know how it goes.........

> And welcome.

>

>

> Mama-Sher, age 69. IPF 3-06, OR.

> Don't fret about tomorrow, God is already there!

>

> I am so sick of this cough

>

>

> I am new to the this forum and have never posted before. I am

hoping

> to see if my issues sound familiar and if others are experiencing

> what I am. I apologize up front for the coming long post.

>

> 14 years ago (I know its been a long time) I was diagnosed as

having

> Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> diagnosed until I was in the terminal stages with all my organs

> failing. I spent a month on life support and had many many bad

> things happen including a stroke, ARDS, septic shock, etc.. The

list

> is long.

>

> Somehow I experienced a miracle and survived this ordeal. Went

thru

> a traditional regiment of CHOP + Bleomycin for several rounds. I

> went into complete remission after my 5th round.

>

> A year after this I was told that I had to have a Bone Marrow

> Transplant to prevent my kind of lymphoma from coming back. So I

> went ahead with this. Part of my treatment was total body

> irradiation (TBI).

>

> So since then I have led a very normal life except for a couple

of

> things. I don't have the long capacity that I used to and I have

> this incredible recurring cough.

>

> I was diagnosed about 7 year ago as having moderate restrictive

lung

> disease. Not a lot was done then. Given what I had gone through I

> didn't pay much attention to this.

>

> The problems that I have is that A) when doing anything aerobic I

run

> out of air fairly quickly. Cycling is a huge sport where I live

and

> I have tried to ride at lunch with the semi-serious group. I can

> keep up well for 4-5 miles but I simply run out of air. I have

come

> to live with this and move on at my own pace. The more annoying

> problem is this cough. I get this recurring dry cough that can

last

> anywhere from 1 to 3 weeks. I am on week 3 of a cough right now.

I

> went to my doc at the beginning of this cycle to get the usual

> narcotic cough syrup. I have since run out. I didn't sleep at all

> last night and right now doesn't look promising for tonight.

>

> I am so sick of this cycle that I can scream. I hate the normal

> routine of cough syrup but hate the lack of sleep even more. It

> seems like I cough hard every 30 seconds or so. I get

> embarrassed going to the doc when this cycle starts. Seems like

with

> all the prescription abuse going on they seem to think anyone who

> shows up as often as I do must have a problem. I am epecially

> annoyed with my current internal doc as I had to direct him to do

> some additional pulmonary testing to confirm that something

wasn't

> right.

>

> If only they knew how much I HATE this cycle. It hurts all

aspects of

> my life. I simply am sick of coughing.

>

> I know that many people here are fighing much worse issues than I

> am. I wish them the best.

>

>

>

[Guest guest]

Even if it doesn't work sounds like Fun!!!!

Thanks,

> > >

> > > ,

> > > Boy you have been through the mill haven't you? It's amazing

what

> > our bodies and spirits can tolerate and we still keep popping up

for

> > more.

> > > Congratulations on remaining so active and taking good care of

> > yourself. In the long run that will make a tremendous difference

in

> > the quality of your life. I'm sure it does already.

> > > I have also suffered with that horrible dry hacking relentless

> > cough. My doctor put me on Advair 250/50 twice a day to control

it.

> > (No I don't have asthma) It works for me but my best suggestion

would

> > echo what Joyce said. Get yourself to a specialist in interstitial

> > lung disease. You don't say where you live but there are

university

> > hospitals all over the country with specialists you can contact.

Your

> > internist is probably a wonderful doctor but I feel confident in

> > saying it is unlikely he sees enough of this type of lung disease

to

> > be able to help you properly.

> > > Please let us know if there is anything we can help you with.

We're

> > here and we " get it " .

> > >

> > > Beth

> > > Age 48 Fibrotic NSIP 06/06

> > >

> > > Change everything. Love and Forgive

> > >

> > >

> > >

> > >

> > >

> > > I am so sick of this cough

> > >

> > > I am new to the this forum and have never posted before. I am

> > hoping

> > > to see if my issues sound familiar and if others are

experiencing

> > > what I am. I apologize up front for the coming long post.

> > >

> > > 14 years ago (I know its been a long time) I was diagnosed as

> > having

> > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> > > diagnosed until I was in the terminal stages with all my organs

> > > failing. I spent a month on life support and had many many bad

> > > things happen including a stroke, ARDS, septic shock, etc.. The

> > list

> > > is long.

> > >

> > > Somehow I experienced a miracle and survived this ordeal. Went

thru

> > > a traditional regiment of CHOP + Bleomycin for several rounds. I

> > > went into complete remission after my 5th round.

> > >

> > > A year after this I was told that I had to have a Bone Marrow

> > > Transplant to prevent my kind of lymphoma from coming back. So I

> > > went ahead with this. Part of my treatment was total body

> > > irradiation (TBI).

> > >

> > > So since then I have led a very normal life except for a couple

of

> > > things. I don't have the long capacity that I used to and I have

> > > this incredible recurring cough.

> > >

> > > I was diagnosed about 7 year ago as having moderate restrictive

> > lung

> > > disease. Not a lot was done then. Given what I had gone through

I

> > > didn't pay much attention to this.

> > >

> > > The problems that I have is that A) when doing anything aerobic

I

> > run

> > > out of air fairly quickly. Cycling is a huge sport where I live

and

> > > I have tried to ride at lunch with the semi-serious group. I can

> > > keep up well for 4-5 miles but I simply run out of air. I have

come

> > > to live with this and move on at my own pace. The more annoying

> > > problem is this cough. I get this recurring dry cough that can

last

> > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right

now. I

> > > went to my doc at the beginning of this cycle to get the usual

> > > narcotic cough syrup. I have since run out. I didn't sleep at

all

> > > last night and right now doesn't look promising for tonight.

> > >

> > > I am so sick of this cycle that I can scream. I hate the normal

> > > routine of cough syrup but hate the lack of sleep even more. It

> > > seems like I cough hard every 30 seconds or so. I get

> > > embarrassed going to the doc when this cycle starts. Seems like

> > with

> > > all the prescription abuse going on they seem to think anyone

who

> > > shows up as often as I do must have a problem. I am epecially

> > > annoyed with my current internal doc as I had to direct him to

do

> > > some additional pulmonary testing to confirm that something

wasn't

> > > right.

> > >

> > > If only they knew how much I HATE this cycle. It hurts all

aspects

> > of

> > > my life. I simply am sick of coughing.

> > >

> > > I know that many people here are fighing much worse issues than

I

> > > am. I wish them the best.

> > >

> > >

> > >

> >

>

[Guest guest]

Geeta,

Thanks for the support. This board is really encouraging.

> >

> > I am new to the this forum and have never posted before. I am

> hoping

> > to see if my issues sound familiar and if others are experiencing

> > what I am. I apologize up front for the coming long post.

> >

> > 14 years ago (I know its been a long time) I was diagnosed as

> having

> > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> > diagnosed until I was in the terminal stages with all my organs

> > failing. I spent a month on life support and had many many bad

> > things happen including a stroke, ARDS, septic shock, etc.. The

> list

> > is long.

> >

> > Somehow I experienced a miracle and survived this ordeal. Went

> thru

> > a traditional regiment of CHOP + Bleomycin for several rounds. I

> > went into complete remission after my 5th round.

> >

> > A year after this I was told that I had to have a Bone Marrow

> > Transplant to prevent my kind of lymphoma from coming back. So I

> > went ahead with this. Part of my treatment was total body

> > irradiation (TBI).

> >

> > So since then I have led a very normal life except for a couple

of

> > things. I don't have the long capacity that I used to and I have

> > this incredible recurring cough.

> >

> > I was diagnosed about 7 year ago as having moderate restrictive

> lung

> > disease. Not a lot was done then. Given what I had gone through

> I

> > didn't pay much attention to this.

> >

> > The problems that I have is that A) when doing anything aerobic I

> run

> > out of air fairly quickly. Cycling is a huge sport where I live

> and

> > I have tried to ride at lunch with the semi-serious group. I can

> > keep up well for 4-5 miles but I simply run out of air. I have

> come

> > to live with this and move on at my own pace. The more annoying

> > problem is this cough. I get this recurring dry cough that can

> last

> > anywhere from 1 to 3 weeks. I am on week 3 of a cough right

now.

> I

> > went to my doc at the beginning of this cycle to get the usual

> > narcotic cough syrup. I have since run out. I didn't sleep at

> all

> > last night and right now doesn't look promising for tonight.

> >

> > I am so sick of this cycle that I can scream. I hate the normal

> > routine of cough syrup but hate the lack of sleep even more. It

> > seems like I cough hard every 30 seconds or so. I get

> > embarrassed going to the doc when this cycle starts. Seems like

> with

> > all the prescription abuse going on they seem to think anyone who

> > shows up as often as I do must have a problem. I am epecially

> > annoyed with my current internal doc as I had to direct him to do

> > some additional pulmonary testing to confirm that something

wasn't

> > right.

> >

> > If only they knew how much I HATE this cycle. It hurts all

aspects

> of

> > my life. I simply am sick of coughing.

> >

> > I know that many people here are fighing much worse issues than I

> > am. I wish them the best.

> >

> >

> >

>

[Guest guest]

Hi . Welcome to the Board. I am glad you found us, but sorry

you have to deal with such issues. The cough...the nagging,

embarassing, stupid.....cough! I have it too. I have had the cough

for so long, that I tend to forget it is so annoying to others. I

even went as far as avoiding public places for a long time because of

the cough and the terrible looks I would get from suspicious

onlookers. Anyway, I have tried everything on the market! As with

Joyce, my pulmonologist prescribed Tesselon Pearls. They are a gel

pill that contain a numbing agent which relaxes the muscles which

cause us to cough. They do not " cure " anything. I take 200 mg.

every 4-6 hours, and sometimes more. My doctors have also prescribed

the occasional narcotic cough syrup, which I only found to be

slightly useful. And, then, finally, my pulmonologist prescribed

hydrocodone (Tylenol with codeine). Codeine is the only thing that

cures my cough. And, the Tylenol eases my chest discomfort

associated with the hard coughing. I can now sleep through the night

without coughing. I also use the occasional puff on the albuterol

inhaler, and on really bad days, I use a nebulizer with Ipatropium

bromide and albuteral mix. I am 41 years young and have a 5 year old

son that I need to be able to keep up with, so the more effective

treatment I receive, the more productive I can be. Sleep being

paramount! I hope some of this has helped you and you will find

expert treatment at Jewish National. Good luck, and nice to meet you.

God Bless,

Tina

IPF PH Ohio

>

> I am new to the this forum and have never posted before. I am

hoping

> to see if my issues sound familiar and if others are experiencing

> what I am. I apologize up front for the coming long post.

>

> 14 years ago (I know its been a long time) I was diagnosed as

having

> Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> diagnosed until I was in the terminal stages with all my organs

> failing. I spent a month on life support and had many many bad

> things happen including a stroke, ARDS, septic shock, etc.. The

list

> is long.

>

> Somehow I experienced a miracle and survived this ordeal. Went

thru

> a traditional regiment of CHOP + Bleomycin for several rounds. I

> went into complete remission after my 5th round.

>

> A year after this I was told that I had to have a Bone Marrow

> Transplant to prevent my kind of lymphoma from coming back. So I

> went ahead with this. Part of my treatment was total body

> irradiation (TBI).

>

> So since then I have led a very normal life except for a couple of

> things. I don't have the long capacity that I used to and I have

> this incredible recurring cough.

>

> I was diagnosed about 7 year ago as having moderate restrictive

lung

> disease. Not a lot was done then. Given what I had gone through I

> didn't pay much attention to this.

>

> The problems that I have is that A) when doing anything aerobic I

run

> out of air fairly quickly. Cycling is a huge sport where I live

and

> I have tried to ride at lunch with the semi-serious group. I can

> keep up well for 4-5 miles but I simply run out of air. I have

come

> to live with this and move on at my own pace. The more annoying

> problem is this cough. I get this recurring dry cough that can

last

> anywhere from 1 to 3 weeks. I am on week 3 of a cough right now.

I

> went to my doc at the beginning of this cycle to get the usual

> narcotic cough syrup. I have since run out. I didn't sleep at all

> last night and right now doesn't look promising for tonight.

>

> I am so sick of this cycle that I can scream. I hate the normal

> routine of cough syrup but hate the lack of sleep even more. It

> seems like I cough hard every 30 seconds or so. I get

> embarrassed going to the doc when this cycle starts. Seems like

with

> all the prescription abuse going on they seem to think anyone who

> shows up as often as I do must have a problem. I am epecially

> annoyed with my current internal doc as I had to direct him to do

> some additional pulmonary testing to confirm that something wasn't

> right.

>

> If only they knew how much I HATE this cycle. It hurts all aspects

of

> my life. I simply am sick of coughing.

>

> I know that many people here are fighing much worse issues than I

> am. I wish them the best.

>

>

>

[Guest guest]

,

How blessed you are to be so close to Jewish National Hospital. A wonderful place for Interstitial Lung Disease patients. You should definatly set up an appt there if possible.

Does the altitude there cause you more shortness of breath?

Yes, it does seem a bit unfair that after battling diseases like Cancer and Lupus, we would have to face this monster. But, most times serious disease will get us by getting our kidneys or lungs. I always thought it would be my kidneys that would get involved.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > >> > > I am new to the this forum and have never posted before. I am > hoping> > > to see if my issues sound familiar and if others are experiencing> > > what I am. I apologize up front for the coming long post.> > >> > > 14 years ago (I know its been a long time) I was diagnosed as > having> > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't> > > diagnosed until I was in the terminal stages with all my organs> > > failing. I spent a month on life support and had many many bad> > > things happen including a stroke, ARDS, septic shock, etc.. The > list> > > is long.> > >> > > Somehow I experienced a miracle and survived this ordeal. Went > thru> > > a traditional regiment of CHOP + Bleomycin for several rounds. I> > > went into complete remission after my 5th round.> > >> > > A year after this I was told that I had to have a Bone Marrow> > > Transplant to prevent my kind of lymphoma from coming back. So I> > > went ahead with this. Part of my treatment was total body> > > irradiation (TBI).> > >> > > So since then I have led a very normal life except for a couple of> > > things. I don't have the long capacity that I used to and I have> > > this incredible recurring cough.> > >> > > I was diagnosed about 7 year ago as having moderate restrictive > lung> > > disease. Not a lot was done then. Given what I had gone through I> > > didn't pay much attention to this.> > >> > > The problems that I have is that A) when doing anything aerobic I > run> > > out of air fairly quickly. Cycling is a huge sport where I live > and> > > I have tried to ride at lunch with the semi-serious group. I can> > > keep up well for 4-5 miles but I simply run out of air. I have > come> > > to live with this and move on at my own pace. The more annoying> > > problem is this cough. I get this recurring dry cough that can > last> > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right now. I> > > went to my doc at the beginning of this cycle to get the usual> > > narcotic cough syrup. I have since run out. I didn't sleep at all> > > last night and right now doesn't look promising for tonight.> > >> > > I am so sick of this cycle that I can scream. I hate the normal> > > routine of cough syrup but hate the lack of sleep even more. It> > > seems like I cough hard every 30 seconds or so. I get> > > embarrassed going to the doc when this cycle starts. Seems like > with> > > all the prescription abuse going on they seem to think anyone who> > > shows up as often as I do must have a problem. I am epecially> > > annoyed with my current internal doc as I had to direct him to do> > > some additional pulmonary testing to confirm that something wasn't> > > right.> > >> > > If only they knew how much I HATE this cycle. It hurts all > aspects of> > > my life. I simply am sick of coughing.> > >> > > I know that many people here are fighing much worse issues than I> > > am. I wish them the best.> > >> > > > > >> >>

[Guest guest]

... I'm catching up with posts...

I'm glad you have a supporting wife and I can only imagine her fear when you cough at night. It's such a helpless feeling not to be able to help a loved one.

Is it possible the cancer did damage to your lungs and this is what you're left with?

This regular coughing has to be worse than a dripping faucet!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

I am so sick of this cough> > > I am new to the this forum and have never posted before. I am hoping > to see if my issues sound familiar and if others are experiencing > what I am. I apologize up front for the coming long post.> > 14 years ago (I know its been a long time) I was diagnosed as having > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't > diagnosed until I was in the terminal stages with all my organs > failing. I spent a month on life support and had many many bad > things happen including a stroke, ARDS, septic shock, etc.. The list > is long. > > Somehow I experienced a miracle and survived this ordeal. Went thru > a traditional regiment of CHOP + Bleomycin for several rounds. I > went into complete remission after my 5th round. > > A year after this I was told that I had to have a Bone Marrow > Transplant to prevent my kind of lymphoma from coming back. So I > went ahead with this. Part of my treatment was total body > irradiation (TBI).> > So since then I have led a very normal life except for a couple of > things. I don't have the long capacity that I used to and I have > this incredible recurring cough. > > I was diagnosed about 7 year ago as having moderate restrictive lung > disease. Not a lot was done then. Given what I had gone through I > didn't pay much attention to this.> > The problems that I have is that A) when doing anything aerobic I run > out of air fairly quickly. Cycling is a huge sport where I live and > I have tried to ride at lunch with the semi-serious group. I can > keep up well for 4-5 miles but I simply run out of air. I have come > to live with this and move on at my own pace. The more annoying > problem is this cough. I get this recurring dry cough that can last > anywhere from 1 to 3 weeks. I am on week 3 of a cough right now. I > went to my doc at the beginning of this cycle to get the usual > narcotic cough syrup. I have since run out. I didn't sleep at all > last night and right now doesn't look promising for tonight. > > I am so sick of this cycle that I can scream. I hate the normal > routine of cough syrup but hate the lack of sleep even more. It > seems like I cough hard every 30 seconds or so. I get > embarrassed going to the doc when this cycle starts. Seems like with > all the prescription abuse going on they seem to think anyone who> shows up as often as I do must have a problem. I am epecially > annoyed with my current internal doc as I had to direct him to do > some additional pulmonary testing to confirm that something wasn't > right. > > If only they knew how much I HATE this cycle. It hurts all aspects of > my life. I simply am sick of coughing. > > I know that many people here are fighing much worse issues than I > am. I wish them the best.> > >

[Guest guest]

Unfortunately she has a constant low level of fear ever since I

crashed in '94. It seems that every few years I get a real scare

that doesn't help. Had pericarditis about 6 years ago that lingered

on for several months. There is a linkage between pericaditis and

lymphoma that got everyone fired up. Luckily, it appeared to be

viral based. Then last year I developed a hole in my colon wall.

Narrowly escaped surgery for this as it healed on its own. No

definitive diagnosis but the leading theory is that too long term use

of Advil did it. No more Advil for me!

Regarding my lung issues, it appears to be due to one or a

combination of the following: When I crashed due to the lymphoma I

developed ARDS. I have read that one of the long term side effects

of that is a restricitive pattern but that is just my input. I have

been told by my oncologist that one of the chemo drugs I had and the

total body irradiation both can cause PF.

I am really hoping that I can get some help at my upcoming appt at

National Jewish. I have been doing this same ritual for way way too

long. I haven't had a decent night's rest since last Friday when my

last script for cough syrup ran out. I am embarrassed to call the

doc to tell him that three weeks later I am STILL coughing. I

thought I was going to be run out of a meeting today at work at one

point as I went into machine gun mode for a while.

I have really come to believe that the typical non-pulmonologist doc

doesn't have a clue about this stuff. I have a couple of friends who

are docs (one a urologist and one a GP) and they didn't really

understand this all that well.

Thanks,

> >

> > ....There are others here who write about coughing too. I

know

> they will respond to you. I don't have that problem now. I did

when I

> was first diagnosed (Dx). Dr put me on NAC (N Acetyl Cistiene).

Many

> here on the board use NAC...it's good for mucus/coughing. But

that

> was when my cough was not so bad. But you can check it out on

> www.puritansales.com

> > It's a supplement, can't hurt you and it's very inexpensive.

> > I'm sorry your life has and is changing so much. We all

experience

> the same thing and lack of sleep makes everything worse doesn't

it.

> > Sounds like Dr hasn't helped much yet....??

> > What state are you in? Married?

> > Let us know how it goes.........

> > And welcome.

> >

> >

> > Mama-Sher, age 69. IPF 3-06, OR.

> > Don't fret about tomorrow, God is already there!

> >

> > I am so sick of this cough

> >

> >

> > I am new to the this forum and have never posted before. I am

> hoping

> > to see if my issues sound familiar and if others are

experiencing

> > what I am. I apologize up front for the coming long post.

> >

> > 14 years ago (I know its been a long time) I was diagnosed as

> having

> > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> > diagnosed until I was in the terminal stages with all my organs

> > failing. I spent a month on life support and had many many bad

> > things happen including a stroke, ARDS, septic shock, etc.. The

> list

> > is long.

> >

> > Somehow I experienced a miracle and survived this ordeal. Went

> thru

> > a traditional regiment of CHOP + Bleomycin for several rounds.

I

> > went into complete remission after my 5th round.

> >

> > A year after this I was told that I had to have a Bone Marrow

> > Transplant to prevent my kind of lymphoma from coming back. So

I

> > went ahead with this. Part of my treatment was total body

> > irradiation (TBI).

> >

> > So since then I have led a very normal life except for a couple

> of

> > things. I don't have the long capacity that I used to and I

have

> > this incredible recurring cough.

> >

> > I was diagnosed about 7 year ago as having moderate restrictive

> lung

> > disease. Not a lot was done then. Given what I had gone through

I

> > didn't pay much attention to this.

> >

> > The problems that I have is that A) when doing anything aerobic

I

> run

> > out of air fairly quickly. Cycling is a huge sport where I live

> and

> > I have tried to ride at lunch with the semi-serious group. I

can

> > keep up well for 4-5 miles but I simply run out of air. I have

> come

> > to live with this and move on at my own pace. The more annoying

> > problem is this cough. I get this recurring dry cough that can

> last

> > anywhere from 1 to 3 weeks. I am on week 3 of a cough right

now.

> I

> > went to my doc at the beginning of this cycle to get the usual

> > narcotic cough syrup. I have since run out. I didn't sleep at

all

> > last night and right now doesn't look promising for tonight.

> >

> > I am so sick of this cycle that I can scream. I hate the normal

> > routine of cough syrup but hate the lack of sleep even more. It

> > seems like I cough hard every 30 seconds or so. I get

> > embarrassed going to the doc when this cycle starts. Seems like

> with

> > all the prescription abuse going on they seem to think anyone

who

> > shows up as often as I do must have a problem. I am epecially

> > annoyed with my current internal doc as I had to direct him to

do

> > some additional pulmonary testing to confirm that something

> wasn't

> > right.

> >

> > If only they knew how much I HATE this cycle. It hurts all

> aspects of

> > my life. I simply am sick of coughing.

> >

> > I know that many people here are fighing much worse issues than

I

> > am. I wish them the best.

> >

> >

> >

>

[Guest guest]

Tina,

Thanks for the reply. Coincidentally, I'm also 41. I have two boys,

13 and 11 who keep me going.

Sounds like you really understand the impact of " The Cough " . The

Looks, the " Are You OK? questions, the imapct of no sleep. It just

stinks.

I had an internal doc prescribe the pearls for me a while back. I

was really hopeful but I got marginal relief at best. Unfortunately

I have become too knowledgeable on the narcotic cough syrup.

Cheritussen work for minor cough attacks. Histussin works for most

but has short duration and more severe dopey effect. Tussionex has

longer period of relief for me and seems to make me less dopey than

Histussin.

The unfortunate thing is it appears to me at this poing that thr is

no win-win treatment even of the symptoms. Cough syrup allows for

sleep but measureabley impacts my productivity at work, makes me

lethargic, etc.. No treatment is worst case. I wind up in a dumb

stupor at work.

Speaking of " The Cough. " It seems that I always have a cough but

when not in what I call an attack it is infrequent. Maybe a handfule

of times an hour. Then when I go into an attack it can be several

times a minute non-stop to the point where I feel like my ribs are

breaking. I am now in my third week of an attack where during the

day is running every couple of minutes but at night it seems to

increase to a couple of times a minute. Really really annoying.

I have done this so many times that I can predict when it will ease

up during the day and when it will increase. I know during an attack

it will ease up around 10 AM. If I haven't slept for a couple of

nights this is often n when I will crash for a few hours before IT

returns around 3 PM.

Does this sound at all like what you experience? I have felt alone

on this issue for so many years that it is really encouraging to talk

to others suffering with similar issues.

Thanks,

> >

> > I am new to the this forum and have never posted before. I am

> hoping

> > to see if my issues sound familiar and if others are experiencing

> > what I am. I apologize up front for the coming long post.

> >

> > 14 years ago (I know its been a long time) I was diagnosed as

> having

> > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> > diagnosed until I was in the terminal stages with all my organs

> > failing. I spent a month on life support and had many many bad

> > things happen including a stroke, ARDS, septic shock, etc.. The

> list

> > is long.

> >

> > Somehow I experienced a miracle and survived this ordeal. Went

> thru

> > a traditional regiment of CHOP + Bleomycin for several rounds. I

> > went into complete remission after my 5th round.

> >

> > A year after this I was told that I had to have a Bone Marrow

> > Transplant to prevent my kind of lymphoma from coming back. So I

> > went ahead with this. Part of my treatment was total body

> > irradiation (TBI).

> >

> > So since then I have led a very normal life except for a couple

of

> > things. I don't have the long capacity that I used to and I have

> > this incredible recurring cough.

> >

> > I was diagnosed about 7 year ago as having moderate restrictive

> lung

> > disease. Not a lot was done then. Given what I had gone through

I

> > didn't pay much attention to this.

> >

> > The problems that I have is that A) when doing anything aerobic I

> run

> > out of air fairly quickly. Cycling is a huge sport where I live

> and

> > I have tried to ride at lunch with the semi-serious group. I can

> > keep up well for 4-5 miles but I simply run out of air. I have

> come

> > to live with this and move on at my own pace. The more annoying

> > problem is this cough. I get this recurring dry cough that can

> last

> > anywhere from 1 to 3 weeks. I am on week 3 of a cough right

now.

> I

> > went to my doc at the beginning of this cycle to get the usual

> > narcotic cough syrup. I have since run out. I didn't sleep at

all

> > last night and right now doesn't look promising for tonight.

> >

> > I am so sick of this cycle that I can scream. I hate the normal

> > routine of cough syrup but hate the lack of sleep even more. It

> > seems like I cough hard every 30 seconds or so. I get

> > embarrassed going to the doc when this cycle starts. Seems like

> with

> > all the prescription abuse going on they seem to think anyone who

> > shows up as often as I do must have a problem. I am epecially

> > annoyed with my current internal doc as I had to direct him to do

> > some additional pulmonary testing to confirm that something

wasn't

> > right.

> >

> > If only they knew how much I HATE this cycle. It hurts all

aspects

> of

> > my life. I simply am sick of coughing.

> >

> > I know that many people here are fighing much worse issues than I

> > am. I wish them the best.

> >

> >

> >

>

[Guest guest]

Joyce,

I apologize for the delay in my response.

I live in Fort which is around 5000 ft. When we first moved

here four years ago I really noticed it. Going up stairs at work was

taxing for awhile. I have aclimated to this altitude and normal

activities don't impact me. I was told once that my lungs have

adapted to absorb more oxygen per liter than the normal lung. This

seems to work for bursty demands but for long sustained oxygen demand

I will simply run out of air.

I love the outdoors and to backpack / hike. I can handle up to

12,000 feet for normal walking with no additional weight such as a

pack but once I carry anything I have to go really really slow. I

get passed by everyone else on the trail. I have strong legs but

will simply run out of air really quick and have to stop frequently

to resaturate with air. Some of my friends really understand and

will go my pace and some understand but forget. A couple of years

ago I went snow camping with heavy pack and snowshoes at about 8000

feet. I had to stop every 50 yards to get air as we walked to where

we would camp. No problem from strength but simply ran out air.

We once took the train up Pike's Peak which is a little over 14000

feet. I thought I was going to pass out just standing. It was

depressing to me as I love the mountains but just wanted to get down.

I have a friend who keeps trying to get me to hike a 14er with him.

I have managed to find ways not to go. I guess my male ego is

keeping me from saying my lungs can't handle the thin air. I need to

let this go.

Over the years I have learned to adapt to the loss of air but this

stinking cough is the thing that I really am so so sick of.

Sorry for the long dissertation. Thanks again,

> > > >

> > > > I am new to the this forum and have never posted before. I am

> > hoping

> > > > to see if my issues sound familiar and if others are

experiencing

> > > > what I am. I apologize up front for the coming long post.

> > > >

> > > > 14 years ago (I know its been a long time) I was diagnosed as

> > having

> > > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> > > > diagnosed until I was in the terminal stages with all my

organs

> > > > failing. I spent a month on life support and had many many bad

> > > > things happen including a stroke, ARDS, septic shock, etc..

The

> > list

> > > > is long.

> > > >

> > > > Somehow I experienced a miracle and survived this ordeal. Went

> > thru

> > > > a traditional regiment of CHOP + Bleomycin for several

rounds. I

> > > > went into complete remission after my 5th round.

> > > >

> > > > A year after this I was told that I had to have a Bone Marrow

> > > > Transplant to prevent my kind of lymphoma from coming back.

So I

> > > > went ahead with this. Part of my treatment was total body

> > > > irradiation (TBI).

> > > >

> > > > So since then I have led a very normal life except for a

couple of

> > > > things. I don't have the long capacity that I used to and I

have

> > > > this incredible recurring cough.

> > > >

> > > > I was diagnosed about 7 year ago as having moderate

restrictive

> > lung

> > > > disease. Not a lot was done then. Given what I had gone

through I

> > > > didn't pay much attention to this.

> > > >

> > > > The problems that I have is that A) when doing anything

aerobic I

> > run

> > > > out of air fairly quickly. Cycling is a huge sport where I

live

> > and

> > > > I have tried to ride at lunch with the semi-serious group. I

can

> > > > keep up well for 4-5 miles but I simply run out of air. I have

> > come

> > > > to live with this and move on at my own pace. The more

annoying

> > > > problem is this cough. I get this recurring dry cough that can

> > last

> > > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right

now. I

> > > > went to my doc at the beginning of this cycle to get the usual

> > > > narcotic cough syrup. I have since run out. I didn't sleep at

all

> > > > last night and right now doesn't look promising for tonight.

> > > >

> > > > I am so sick of this cycle that I can scream. I hate the

normal

> > > > routine of cough syrup but hate the lack of sleep even more.

It

> > > > seems like I cough hard every 30 seconds or so. I get

> > > > embarrassed going to the doc when this cycle starts. Seems

like

> > with

> > > > all the prescription abuse going on they seem to think anyone

who

> > > > shows up as often as I do must have a problem. I am epecially

> > > > annoyed with my current internal doc as I had to direct him

to do

> > > > some additional pulmonary testing to confirm that something

wasn't

> > > > right.

> > > >

> > > > If only they knew how much I HATE this cycle. It hurts all

> > aspects of

> > > > my life. I simply am sick of coughing.

> > > >

> > > > I know that many people here are fighing much worse issues

than I

> > > > am. I wish them the best.

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

,

You are so right when you say that some doctors do not know anything about Pulmonary Fibrosis. Even pulmonologists sometimes do not get it. They deal with COPD and Asthma, etc. I have had nurses and technicians ask, "What is that?" Awareness is one major goal of the Pulmonary Fibrosis Foundation. Awareness needs to begin with the medical community!

People just assume that we have COPD and that it is because we have smoked. Not much sympathy, so not many donations for research, etc. That has to change. Even when celebrities have it and die with it, no one mentions the disease.

Don't be embarrassed to ask for medication, . You can not function with that cough. It interupts your life. Ask for what you need and it is the doc's job to fix it. I admire your courage to go on with working and your life in the face of all you have been through.

I am so thankful that you are going to National Jewish. You are so blessed to live so close!

Call the doc tomorrow and get that prescription refilled.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > >> > > ....There are others here who write about coughing too. I > know > > they will respond to you. I don't have that problem now. I did > when I > > was first diagnosed (Dx). Dr put me on NAC (N Acetyl Cistiene). > Many > > here on the board use NAC...it's good for mucus/coughing. But > that > > was when my cough was not so bad. But you can check it out on > > www.puritansales.com > > > It's a supplement, can't hurt you and it's very inexpensive.> > > I'm sorry your life has and is changing so much. We all > experience > > the same thing and lack of sleep makes everything worse doesn't > it.> > > Sounds like Dr hasn't helped much yet....??> > > What state are you in? Married?> > > Let us know how it goes.........> > > And welcome.> > > > > > > > > Mama-Sher, age 69. IPF 3-06, OR.> > > Don't fret about tomorrow, God is already there!> > > > > > I am so sick of this cough> > > > > > > > > I am new to the this forum and have never posted before. I am > > hoping > > > to see if my issues sound familiar and if others are > experiencing > > > what I am. I apologize up front for the coming long post.> > > > > > 14 years ago (I know its been a long time) I was diagnosed as > > having > > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't > > > diagnosed until I was in the terminal stages with all my organs > > > failing. I spent a month on life support and had many many bad > > > things happen including a stroke, ARDS, septic shock, etc.. The > > list > > > is long. > > > > > > Somehow I experienced a miracle and survived this ordeal. Went > > thru > > > a traditional regiment of CHOP + Bleomycin for several rounds. > I > > > went into complete remission after my 5th round. > > > > > > A year after this I was told that I had to have a Bone Marrow > > > Transplant to prevent my kind of lymphoma from coming back. So > I > > > went ahead with this. Part of my treatment was total body > > > irradiation (TBI).> > > > > > So since then I have led a very normal life except for a couple > > of > > > things. I don't have the long capacity that I used to and I > have > > > this incredible recurring cough. > > > > > > I was diagnosed about 7 year ago as having moderate restrictive > > lung > > > disease. Not a lot was done then. Given what I had gone through > I > > > didn't pay much attention to this.> > > > > > The problems that I have is that A) when doing anything aerobic > I > > run > > > out of air fairly quickly. Cycling is a huge sport where I live > > and > > > I have tried to ride at lunch with the semi-serious group. I > can > > > keep up well for 4-5 miles but I simply run out of air. I have > > come > > > to live with this and move on at my own pace. The more annoying > > > problem is this cough. I get this recurring dry cough that can > > last > > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right > now. > > I > > > went to my doc at the beginning of this cycle to get the usual > > > narcotic cough syrup. I have since run out. I didn't sleep at > all > > > last night and right now doesn't look promising for tonight. > > > > > > I am so sick of this cycle that I can scream. I hate the normal > > > routine of cough syrup but hate the lack of sleep even more. It > > > seems like I cough hard every 30 seconds or so. I get > > > embarrassed going to the doc when this cycle starts. Seems like > > with > > > all the prescription abuse going on they seem to think anyone > who> > > shows up as often as I do must have a problem. I am epecially > > > annoyed with my current internal doc as I had to direct him to > do > > > some additional pulmonary testing to confirm that something > > wasn't > > > right. > > > > > > If only they knew how much I HATE this cycle. It hurts all > > aspects of > > > my life. I simply am sick of coughing. > > > > > > I know that many people here are fighing much worse issues than > I > > > am. I wish them the best.> > > > > > > > >> >>

[Guest guest]

,

When you see the docs at National Jewish, talk to them about supplemental 02 for hiking, etc. Even if you don't need it for everyday tasks, it would allow you to continue with your lifestyle.

By the way, my worst coughing happens when I am oxygen deprived. I always know when my saturation is low because I begin coughing. That may be part of your coughing. I am thinking of the coughing attack on the plane and also because of where you live. Most of us with full blown active disease require more 02 when we fly. etc.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > > > >> > > > > I am new to the this forum and have never posted before. I am> > > hoping> > > > > to see if my issues sound familiar and if others are > experiencing> > > > > what I am. I apologize up front for the coming long post.> > > > >> > > > > 14 years ago (I know its been a long time) I was diagnosed as> > > having> > > > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't> > > > > diagnosed until I was in the terminal stages with all my > organs> > > > > failing. I spent a month on life support and had many many bad> > > > > things happen including a stroke, ARDS, septic shock, etc.. > The> > > list> > > > > is long.> > > > >> > > > > Somehow I experienced a miracle and survived this ordeal. Went> > > thru> > > > > a traditional regiment of CHOP + Bleomycin for several > rounds. I> > > > > went into complete remission after my 5th round.> > > > >> > > > > A year after this I was told that I had to have a Bone Marrow> > > > > Transplant to prevent my kind of lymphoma from coming back. > So I> > > > > went ahead with this. Part of my treatment was total body> > > > > irradiation (TBI).> > > > >> > > > > So since then I have led a very normal life except for a > couple of> > > > > things. I don't have the long capacity that I used to and I > have> > > > > this incredible recurring cough.> > > > >> > > > > I was diagnosed about 7 year ago as having moderate > restrictive> > > lung> > > > > disease. Not a lot was done then. Given what I had gone > through I> > > > > didn't pay much attention to this.> > > > >> > > > > The problems that I have is that A) when doing anything > aerobic I> > > run> > > > > out of air fairly quickly. Cycling is a huge sport where I > live> > > and> > > > > I have tried to ride at lunch with the semi-serious group. I > can> > > > > keep up well for 4-5 miles but I simply run out of air. I have> > > come> > > > > to live with this and move on at my own pace. The more > annoying> > > > > problem is this cough. I get this recurring dry cough that can> > > last> > > > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right > now. I> > > > > went to my doc at the beginning of this cycle to get the usual> > > > > narcotic cough syrup. I have since run out. I didn't sleep at > all> > > > > last night and right now doesn't look promising for tonight.> > > > >> > > > > I am so sick of this cycle that I can scream. I hate the > normal> > > > > routine of cough syrup but hate the lack of sleep even more. > It> > > > > seems like I cough hard every 30 seconds or so. I get> > > > > embarrassed going to the doc when this cycle starts. Seems > like> > > with> > > > > all the prescription abuse going on they seem to think anyone > who> > > > > shows up as often as I do must have a problem. I am epecially> > > > > annoyed with my current internal doc as I had to direct him > to do> > > > > some additional pulmonary testing to confirm that something > wasn't> > > > > right.> > > > >> > > > > If only they knew how much I HATE this cycle. It hurts all> > > aspects of> > > > > my life. I simply am sick of coughing.> > > > >> > > > > I know that many people here are fighing much worse issues > than I> > > > > am. I wish them the best.> > > > >> > > > > > > > > >> > > >> > >> >>

[Guest guest]

Hi ,

Have a welcome from Sunny England.

I have 'the cough' and constantly clear my throat. Some times it's worse than others. If it's going to wake me in the night, I find that 5am is the time it gets me. Sometimes it feels like there's a lump that I just can't get behind to shift. Unexpected expectorating annoys me too.

Like Tina says, I've had it for so long, I've forgotten that it annoys others. My family are used to ignoring it until I go purple, in fact they ignore me coughing so much now, that when I needed help because I was choking I was pretty much ignored then too

There are times when I can cough myself a splitting headache, and those aren't fun. And I have cracked ribs in the past from coughing too hard. That's not fun either. I find the cough simply exhausting, and that's without a chest infection.

Love Ze (38) Dermatomyositis etc, PF for years, Pulmonary Hyptertension 2008

> > >> > > I am new to the this forum and have never posted before. I am > > hoping > > > to see if my issues sound familiar and if others are experiencing > > > what I am. I apologize up front for the coming long post.> > > > > > 14 years ago (I know its been a long time) I was diagnosed as > > having > > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't > > > diagnosed until I was in the terminal stages with all my organs > > > failing. I spent a month on life support and had many many bad > > > things happen including a stroke, ARDS, septic shock, etc.. The > > list > > > is long. > > > > > > Somehow I experienced a miracle and survived this ordeal. Went > > thru > > > a traditional regiment of CHOP + Bleomycin for several rounds. I > > > went into complete remission after my 5th round. > > > > > > A year after this I was told that I had to have a Bone Marrow > > > Transplant to prevent my kind of lymphoma from coming back. So I > > > went ahead with this. Part of my treatment was total body > > > irradiation (TBI).> > > > > > So since then I have led a very normal life except for a couple > of > > > things. I don't have the long capacity that I used to and I have > > > this incredible recurring cough. > > > > > > I was diagnosed about 7 year ago as having moderate restrictive > > lung > > > disease. Not a lot was done then. Given what I had gone through > I > > > didn't pay much attention to this.> > > > > > The problems that I have is that A) when doing anything aerobic I > > run > > > out of air fairly quickly. Cycling is a huge sport where I live > > and > > > I have tried to ride at lunch with the semi-serious group. I can > > > keep up well for 4-5 miles but I simply run out of air. I have > > come > > > to live with this and move on at my own pace. The more annoying > > > problem is this cough. I get this recurring dry cough that can > > last > > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right > now. > > I > > > went to my doc at the beginning of this cycle to get the usual > > > narcotic cough syrup. I have since run out. I didn't sleep at > all > > > last night and right now doesn't look promising for tonight. > > > > > > I am so sick of this cycle that I can scream. I hate the normal > > > routine of cough syrup but hate the lack of sleep even more. It > > > seems like I cough hard every 30 seconds or so. I get > > > embarrassed going to the doc when this cycle starts. Seems like > > with > > > all the prescription abuse going on they seem to think anyone who> > > shows up as often as I do must have a problem. I am epecially > > > annoyed with my current internal doc as I had to direct him to do > > > some additional pulmonary testing to confirm that something > wasn't > > > right. > > > > > > If only they knew how much I HATE this cycle. It hurts all > aspects > > of > > > my life. I simply am sick of coughing. > > > > > > I know that many people here are fighing much worse issues than I > > > am. I wish them the best.> > > > > > > > >> >>

[Guest guest]

Zena,

Did the doctor know what your PAH pressures were. Most usually they start out as mild, then slowly go up. There is now, as you know, several meds for it. What happened with me was unreal. I had nothing 18 months ago. Checked by catherization. Then it came like a freight train. Pulmonary pressure should be 14, mine was 75-80. The doc told me 68, but the report said different. This in just a matter of weeks. Weird!

They will check again next week during another heart cath and stent placement to see if the Flolan is working. I can feel that it is. I am curious to know how much. I still feel lousy, but not as lousy!

I hope that yours can be treated with a less invasive drug. A pill would be nice. This medicine changes your life. I am hooked to an IV drug day and night. It has to be cold, so there is constant changing of cold packs. It is like carrying a purse all the time. There are hours from every day dealing with mixing the medicine and setting the computerized pump and changing dressings. Aaaargh! Then there is the spiderweb of tubing that I stay tangled up in at all times. But, is it worth it? Oh yes! I get to see the sun come up today. Soon!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

> > > >> > > > I am new to the this forum and have never posted before. I am> > > hoping> > > > to see if my issues sound familiar and if others are experiencing> > > > what I am. I apologize up front for the coming long post.> > > >> > > > 14 years ago (I know its been a long time) I was diagnosed as> > > having> > > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't> > > > diagnosed until I was in the terminal stages with all my organs> > > > failing. I spent a month on life support and had many many bad> > > > things happen including a stroke, ARDS, septic shock, etc.. The> > > list> > > > is long.> > > >> > > > Somehow I experienced a miracle and survived this ordeal. Went> > > thru> > > > a traditional regiment of CHOP + Bleomycin for several rounds. I> > > > went into complete remission after my 5th round.> > > >> > > > A year after this I was told that I had to have a Bone Marrow> > > > Transplant to prevent my kind of lymphoma from coming back. So I> > > > went ahead with this. Part of my treatment was total body> > > > irradiation (TBI).> > > >> > > > So since then I have led a very normal life except for a couple> > of> > > > things. I don't have the long capacity that I used to and I have> > > > this incredible recurring cough.> > > >> > > > I was diagnosed about 7 year ago as having moderate restrictive> > > lung> > > > disease. Not a lot was done then. Given what I had gone through> > I> > > > didn't pay much attention to this.> > > >> > > > The problems that I have is that A) when doing anything aerobic I> > > run> > > > out of air fairly quickly. Cycling is a huge sport where I live> > > and> > > > I have tried to ride at lunch with the semi-serious group. I can> > > > keep up well for 4-5 miles but I simply run out of air. I have> > > come> > > > to live with this and move on at my own pace. The more annoying> > > > problem is this cough. I get this recurring dry cough that can> > > last> > > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right> > now.> > > I> > > > went to my doc at the beginning of this cycle to get the usual> > > > narcotic cough syrup. I have since run out. I didn't sleep at> > all> > > > last night and right now doesn't look promising for tonight.> > > >> > > > I am so sick of this cycle that I can scream. I hate the normal> > > > routine of cough syrup but hate the lack of sleep even more. It> > > > seems like I cough hard every 30 seconds or so. I get> > > > embarrassed going to the doc when this cycle starts. Seems like> > > with> > > > all the prescription abuse going on they seem to think anyone who> > > > shows up as often as I do must have a problem. I am epecially> > > > annoyed with my current internal doc as I had to direct him to do> > > > some additional pulmonary testing to confirm that something> > wasn't> > > > right.> > > >> > > > If only they knew how much I HATE this cycle. It hurts all> > aspects> > > of> > > > my life. I simply am sick of coughing.> > > >> > > > I know that many people here are fighing much worse issues than I> > > > am. I wish them the best.> > > >> > > > > > > >> > >> >>

[Guest guest]

Tina,

I have posted before that I think Tessalon Perles aka Benzonatate is

one of the only things that I actually think has helped suppress my

cough. My only complaint has been that I feel like I need one more

in a day. It was my understanding that I am on the maximum dosage,

200 mg. 3/day. You posted that you take them every 4-6 hours

sometimes more. Has your doctor prescribed them that way? That is

exactly how I've felt I needed them every 4-6 hours or at least

4/day instead of 3. I often wondered what the issue is. I cannot

take any codeine or codeine derivative so those cough syrups that

help are of limits to me. The only other thing I take that I think

helps the cough is Max Strength Mucinex DM, which has the cough

suppressant Dextromethorphan (the DM) in addition to the expectorant.

Thanks,

Kerry

37 IPF '01 S. IN

> >

> > I am new to the this forum and have never posted before. I am

> hoping

> > to see if my issues sound familiar and if others are

experiencing

> > what I am. I apologize up front for the coming long post.

> >

> > 14 years ago (I know its been a long time) I was diagnosed as

> having

> > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't

> > diagnosed until I was in the terminal stages with all my organs

> > failing. I spent a month on life support and had many many bad

> > things happen including a stroke, ARDS, septic shock, etc.. The

> list

> > is long.

> >

> > Somehow I experienced a miracle and survived this ordeal. Went

> thru

> > a traditional regiment of CHOP + Bleomycin for several rounds.

I

> > went into complete remission after my 5th round.

> >

> > A year after this I was told that I had to have a Bone Marrow

> > Transplant to prevent my kind of lymphoma from coming back. So

I

> > went ahead with this. Part of my treatment was total body

> > irradiation (TBI).

> >

> > So since then I have led a very normal life except for a couple

of

> > things. I don't have the long capacity that I used to and I

have

> > this incredible recurring cough.

> >

> > I was diagnosed about 7 year ago as having moderate restrictive

> lung

> > disease. Not a lot was done then. Given what I had gone

through I

> > didn't pay much attention to this.

> >

> > The problems that I have is that A) when doing anything aerobic

I

> run

> > out of air fairly quickly. Cycling is a huge sport where I live

> and

> > I have tried to ride at lunch with the semi-serious group. I

can

> > keep up well for 4-5 miles but I simply run out of air. I have

> come

> > to live with this and move on at my own pace. The more annoying

> > problem is this cough. I get this recurring dry cough that can

> last

> > anywhere from 1 to 3 weeks. I am on week 3 of a cough right

now.

> I

> > went to my doc at the beginning of this cycle to get the usual

> > narcotic cough syrup. I have since run out. I didn't sleep at

all

> > last night and right now doesn't look promising for tonight.

> >

> > I am so sick of this cycle that I can scream. I hate the normal

> > routine of cough syrup but hate the lack of sleep even more. It

> > seems like I cough hard every 30 seconds or so. I get

> > embarrassed going to the doc when this cycle starts. Seems like

> with

> > all the prescription abuse going on they seem to think anyone who

> > shows up as often as I do must have a problem. I am epecially

> > annoyed with my current internal doc as I had to direct him to

do

> > some additional pulmonary testing to confirm that something

wasn't

> > right.

> >

> > If only they knew how much I HATE this cycle. It hurts all

aspects

> of

> > my life. I simply am sick of coughing.

> >

> > I know that many people here are fighing much worse issues than

I

> > am. I wish them the best.

> >

> >

> >

>

[Guest guest]

Hi Ze As I was reading your post, I have been wondering, what is pulmonary hypertension? Many have it and saw it in your post. K IllinoisZena wrote: Hi , Have a welcome from Sunny England. I have 'the cough' and constantly clear my throat. Some times it's worse than

others. If it's going to wake me in the night, I find that 5am is the time it gets me. Sometimes it feels like there's a lump that I just can't get behind to shift. Unexpected expectorating annoys me too. Like Tina says, I've had it for so long, I've forgotten that it annoys others. My family are used to ignoring it until I go purple, in fact they ignore me coughing so much now, that when I needed help because I was choking I was pretty much ignored then too There are times when I can cough myself a splitting headache, and those aren't fun. And I have cracked ribs in the past from coughing too hard. That's not fun either. I find the cough simply exhausting, and that's without a chest

infection. Love Ze (38) Dermatomyositis etc, PF for years, Pulmonary Hyptertension 2008 > > >> > > I am new to the this forum and have never posted before. I am > > hoping > > > to see if my issues

sound familiar and if others are experiencing > > > what I am. I apologize up front for the coming long post.> > > > > > 14 years ago (I know its been a long time) I was diagnosed as > > having > > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't > > > diagnosed until I was in the terminal stages with all my organs > > > failing. I spent a month on life support and had many many bad > > > things happen including a stroke, ARDS, septic shock, etc.. The > > list > > > is long. > > > > > > Somehow I experienced a miracle and survived this ordeal. Went > > thru > > > a traditional regiment of CHOP + Bleomycin for several rounds. I > > > went into complete remission after my 5th round. > > > > > > A year after this I was told that I had to have a Bone

Marrow > > > Transplant to prevent my kind of lymphoma from coming back. So I > > > went ahead with this. Part of my treatment was total body > > > irradiation (TBI).> > > > > > So since then I have led a very normal life except for a couple > of > > > things. I don't have the long capacity that I used to and I have > > > this incredible recurring cough. > > > > > > I was diagnosed about 7 year ago as having moderate restrictive > > lung > > > disease. Not a lot was done then. Given what I had gone through > I > > > didn't pay much attention to this.> > > > > > The problems that I have is that A) when doing anything aerobic I > > run > > > out of air fairly quickly. Cycling is a huge sport where I live > > and > > > I have tried to ride

at lunch with the semi-serious group. I can > > > keep up well for 4-5 miles but I simply run out of air. I have > > come > > > to live with this and move on at my own pace. The more annoying > > > problem is this cough. I get this recurring dry cough that can > > last > > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right > now. > > I > > > went to my doc at the beginning of this cycle to get the usual > > > narcotic cough syrup. I have since run out. I didn't sleep at > all > > > last night and right now doesn't look promising for tonight. > > > > > > I am so sick of this cycle that I can scream. I hate the normal > > > routine of cough syrup but hate the lack of sleep even more. It > > > seems like I cough hard every 30 seconds or so. I get > > > embarrassed

going to the doc when this cycle starts. Seems like > > with > > > all the prescription abuse going on they seem to think anyone who> > > shows up as often as I do must have a problem. I am epecially > > > annoyed with my current internal doc as I had to direct him to do > > > some additional pulmonary testing to confirm that something > wasn't > > > right. > > > > > > If only they knew how much I HATE this cycle. It hurts all > aspects > > of > > > my life. I simply am sick of coughing. > > > > > > I know that many people here are fighing much worse issues than I > > > am. I wish them the best.> > > > > > > > >> >> K Central Il Hubby ipf- 2006 As

for me and my house, we will serve the Lord 14

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[Guest guest]

Tina wrote: Hi . Welcome to the Board. I am glad you found us, but sorry you have to deal with such issues. The cough...the nagging, embarassing, stupid.....cough! I have it too. I have had the cough for so long, that I tend to forget it is so annoying to others. I even went as far as avoiding public places for a long time because of the cough and the terrible looks I would get from suspicious onlookers. Anyway, I have tried everything on the market! As with Joyce, my pulmonologist

prescribed Tesselon Pearls. They are a gel pill that contain a numbing agent which relaxes the muscles which cause us to cough. They do not "cure" anything. I take 200 mg. every 4-6 hours, and sometimes more. My doctors have also prescribed the occasional narcotic cough syrup, which I only found to be slightly useful. And, then, finally, my pulmonologist prescribed hydrocodone (Tylenol with codeine). Codeine is the only thing that cures my cough. And, the Tylenol eases my chest discomfort associated with the hard coughing. I can now sleep through the night without coughing. I also use the occasional puff on the albuterol inhaler, and on really bad days, I use a nebulizer with Ipatropium bromide and albuteral mix. I am 41 years young and have a 5 year old son that I need to be able to keep up with, so the more effective treatment I receive, the more productive I can be. Sleep being paramount! I hope some of this has

helped you and you will find expert treatment at Jewish National. Good luck, and nice to meet you.God Bless,TinaIPF PH Ohio>> I am new to the this forum and have never posted before. I am hoping > to see if my issues sound familiar and if others are experiencing > what I am. I apologize up front for the coming long post.> > 14 years ago (I know its been a long time) I was diagnosed as having > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't > diagnosed until I was in the terminal stages with all my organs > failing. I spent a month on life support and had many many bad > things happen including a stroke, ARDS, septic shock, etc.. The list > is long. > > Somehow I experienced a miracle and

survived this ordeal. Went thru > a traditional regiment of CHOP + Bleomycin for several rounds. I > went into complete remission after my 5th round. > > A year after this I was told that I had to have a Bone Marrow > Transplant to prevent my kind of lymphoma from coming back. So I > went ahead with this. Part of my treatment was total body > irradiation (TBI).> > So since then I have led a very normal life except for a couple of > things. I don't have the long capacity that I used to and I have > this incredible recurring cough. > > I was diagnosed about 7 year ago as having moderate restrictive lung > disease. Not a lot was done then. Given what I had gone through I > didn't pay much attention to this.> > The problems that I have is that A) when doing anything aerobic I run > out of air fairly quickly. Cycling is a huge sport where I

live and > I have tried to ride at lunch with the semi-serious group. I can > keep up well for 4-5 miles but I simply run out of air. I have come > to live with this and move on at my own pace. The more annoying > problem is this cough. I get this recurring dry cough that can last > anywhere from 1 to 3 weeks. I am on week 3 of a cough right now. I > went to my doc at the beginning of this cycle to get the usual > narcotic cough syrup. I have since run out. I didn't sleep at all > last night and right now doesn't look promising for tonight. > > I am so sick of this cycle that I can scream. I hate the normal > routine of cough syrup but hate the lack of sleep even more. It > seems like I cough hard every 30 seconds or so. I get > embarrassed going to the doc when this cycle starts. Seems like with > all the prescription abuse going on they seem to think

anyone who> shows up as often as I do must have a problem. I am epecially > annoyed with my current internal doc as I had to direct him to do > some additional pulmonary testing to confirm that something wasn't > right. > > If only they knew how much I HATE this cycle. It hurts all aspects of > my life. I simply am sick of coughing. > > I know that many people here are fighing much worse issues than I > am. I wish them the best.> > > K Central Il Hubby ipf- 2006 As for me and my

house, we will serve the Lord 14

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[Guest guest]

,

My aunt loves books about the Austalian Outback.

Her favorite is Sara 's From Strength to

Strength about Bullo Ranch. I know you are a reader

and wonder if you've ever read Sara's autobiographies

and know of any similar books. Thanks-

--- wrote:

>

> Hi ,

>

> What a long tough road you've been

> travelling...my

> solution to the nasty dry cough is a BIT unorthodox

> & very intoxicating

> BUT it works for me.....Stone's Green Ginger

> Wine.....

>

> Good luck with your upcoming

> visit to JewishNational

> ....

>

> I live in Australia & we're

> often a bit unorthodox

> Downunder....goes with the Territory as they say!

>

> in Oz

>

>

>

> > >

> > > ,

> > > Boy you have been through the mill haven't you?

> It's amazing what

> > our bodies and spirits can tolerate and we still

> keep popping up for

> > more.

> > > Congratulations on remaining so active and

> taking good care of

> > yourself. In the long run that will make a

> tremendous difference in

> > the quality of your life. I'm sure it does

> already.

> > > I have also suffered with that horrible dry

> hacking relentless

> > cough. My doctor put me on Advair 250/50 twice a

> day to control it.

> > (No I don't have asthma) It works for me but my

> best suggestion would

> > echo what Joyce said. Get yourself to a specialist

> in interstitial

> > lung disease. You don't say where you live but

> there are university

> > hospitals all over the country with specialists

> you can contact. Your

> > internist is probably a wonderful doctor but I

> feel confident in

> > saying it is unlikely he sees enough of this type

> of lung disease to

> > be able to help you properly.

> > > Please let us know if there is anything we can

> help you with. We're

> > here and we " get it " .

> > >

> > > Beth

> > > Age 48 Fibrotic NSIP 06/06

> > >

> > > Change everything. Love and Forgive

> > >

> > >

> > >

> > >

> > >

> > > I am so sick of this

> cough

> > >

> > > I am new to the this forum and have never posted

> before. I am

> > hoping

> > > to see if my issues sound familiar and if others

> are experiencing

> > > what I am. I apologize up front for the coming

> long post.

> > >

> > > 14 years ago (I know its been a long time) I was

> diagnosed as

> > having

> > > Stage 4 T-cell Lymphoma. The bad thing was that

> this wasn't

> > > diagnosed until I was in the terminal stages

> with all my organs

> > > failing. I spent a month on life support and had

> many many bad

> > > things happen including a stroke, ARDS, septic

> shock, etc.. The

> > list

> > > is long.

> > >

> > > Somehow I experienced a miracle and survived

> this ordeal. Went thru

> > > a traditional regiment of CHOP + Bleomycin for

> several rounds. I

> > > went into complete remission after my 5th round.

> > >

> > > A year after this I was told that I had to have

> a Bone Marrow

> > > Transplant to prevent my kind of lymphoma from

> coming back. So I

> > > went ahead with this. Part of my treatment was

> total body

> > > irradiation (TBI).

> > >

> > > So since then I have led a very normal life

> except for a couple of

> > > things. I don't have the long capacity that I

> used to and I have

> > > this incredible recurring cough.

> > >

> > > I was diagnosed about 7 year ago as having

> moderate restrictive

> > lung

> > > disease. Not a lot was done then. Given what I

> had gone through I

> > > didn't pay much attention to this.

> > >

> > > The problems that I have is that A) when doing

> anything aerobic I

> > run

> > > out of air fairly quickly. Cycling is a huge

> sport where I live and

> > > I have tried to ride at lunch with the

> semi-serious group. I can

> > > keep up well for 4-5 miles but I simply run out

> of air. I have come

> > > to live with this and move on at my own pace.

> The more annoying

> > > problem is this cough. I get this recurring dry

> cough that can last

> > > anywhere from 1 to 3 weeks. I am on week 3 of a

> cough right now. I

> > > went to my doc at the beginning of this cycle to

> get the usual

> > > narcotic cough syrup. I have since run out. I

> didn't sleep at all

> > > last night and right now doesn't look promising

> for tonight.

> > >

> > > I am so sick of this cycle that I can scream. I

> hate the normal

> > > routine of cough syrup but hate the lack of

> sleep even more. It

> > > seems like I cough hard every 30 seconds or so.

> I get

> > > embarrassed going to the doc when this cycle

> starts. Seems like

>

=== message truncated ===

Sarcoid/PF 3/2006 California

________________________________________________________________________________\

____

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[Guest guest]

Hi ,

I DID relpy to this query BUT to the wrong person (I'd forgotten WHo posterd the query ..oops!)

I can't think of any up to the minute books other than Sara Henbderson's but there are a few beauties from earlier periods....there's the Billabong Series (can't remember the author..there's "We of the Never Never" by Mtrs Aeneus Gunn (that was also turned into a movie).

It's a life style that has pretty much disappeared since Multi-national Pastoral Companies bought up all the outback stations & out in managers.

Amazon .com may be able to help!

GIO

> > > >> > > > ,> > > > Boy you have been through the mill haven't you?> > It's amazing what> > > our bodies and spirits can tolerate and we still> > keep popping up for> > > more.> > > > Congratulations on remaining so active and> > taking good care of> > > yourself. In the long run that will make a> > tremendous difference in> > > the quality of your life. I'm sure it does> > already.> > > > I have also suffered with that horrible dry> > hacking relentless> > > cough. My doctor put me on Advair 250/50 twice a> > day to control it.> > > (No I don't have asthma) It works for me but my> > best suggestion would> > > echo what Joyce said. Get yourself to a specialist> > in interstitial> > > lung disease. You don't say where you live but> > there are university> > > hospitals all over the country with specialists> > you can contact. Your> > > internist is probably a wonderful doctor but I> > feel confident in> > > saying it is unlikely he sees enough of this type> > of lung disease to> > > be able to help you properly.> > > > Please let us know if there is anything we can> > help you with. We're> > > here and we "get it".> > > >> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > > >> > > >> > > >> > > >> > > > I am so sick of this> > cough> > > >> > > > I am new to the this forum and have never posted> > before. I am> > > hoping> > > > to see if my issues sound familiar and if others> > are experiencing> > > > what I am. I apologize up front for the coming> > long post.> > > >> > > > 14 years ago (I know its been a long time) I was> > diagnosed as> > > having> > > > Stage 4 T-cell Lymphoma. The bad thing was that> > this wasn't> > > > diagnosed until I was in the terminal stages> > with all my organs> > > > failing. I spent a month on life support and had> > many many bad> > > > things happen including a stroke, ARDS, septic> > shock, etc.. The> > > list> > > > is long.> > > >> > > > Somehow I experienced a miracle and survived> > this ordeal. Went thru> > > > a traditional regiment of CHOP + Bleomycin for> > several rounds. I> > > > went into complete remission after my 5th round.> > > >> > > > A year after this I was told that I had to have> > a Bone Marrow> > > > Transplant to prevent my kind of lymphoma from> > coming back. So I> > > > went ahead with this. Part of my treatment was> > total body> > > > irradiation (TBI).> > > >> > > > So since then I have led a very normal life> > except for a couple of> > > > things. I don't have the long capacity that I> > used to and I have> > > > this incredible recurring cough.> > > >> > > > I was diagnosed about 7 year ago as having> > moderate restrictive> > > lung> > > > disease. Not a lot was done then. Given what I> > had gone through I> > > > didn't pay much attention to this.> > > >> > > > The problems that I have is that A) when doing> > anything aerobic I> > > run> > > > out of air fairly quickly. Cycling is a huge> > sport where I live and> > > > I have tried to ride at lunch with the> > semi-serious group. I can> > > > keep up well for 4-5 miles but I simply run out> > of air. I have come> > > > to live with this and move on at my own pace.> > The more annoying> > > > problem is this cough. I get this recurring dry> > cough that can last> > > > anywhere from 1 to 3 weeks. I am on week 3 of a> > cough right now. I> > > > went to my doc at the beginning of this cycle to> > get the usual> > > > narcotic cough syrup. I have since run out. I> > didn't sleep at all> > > > last night and right now doesn't look promising> > for tonight.> > > >> > > > I am so sick of this cycle that I can scream. I> > hate the normal> > > > routine of cough syrup but hate the lack of> > sleep even more. It> > > > seems like I cough hard every 30 seconds or so.> > I get> > > > embarrassed going to the doc when this cycle> > starts. Seems like> > > === message truncated ===> > > Sarcoid/PF 3/2006 California> > > > ____________________________________________________________________________________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ>