Re: Getting scared

[Guest guest]

Hi ,

Sounds like you have been through a lot. I have NOT had a biopsy simply because of what you have been through. Some have had a better experience but about 70-80% of people I have talked to have told me "don't do it". I am 61 and don't know if I want a transplant or not. My feelings now are no but could change when I get worse. I can't relate either to the feeling you have encountered but I know I am on 2-4 L and the shortness of breath is scary to me. I also am paranoid about the suffocating feeling. I know there are more help coming from this board as there always is. I do feel most of us have a fear of the lack of O2 and what we will experience.

Wish I could be more help,

Joe

   JOE & JOANIE LAMENSKIE

IPF JAN. 2008

-- Getting scared

Hello all, my name is and I have had IPF for 3+ years now. Up to now, it has not been that bad, a LOT of coughing, some shortness of breath. I agreed to get some home O2 tanks for exertion or whatever, but was still very functional. Then I agreed to let the doctor perform a biopsy. Big mistake. After the first surgury, I was weak and sore and needed alittle more O2 than usual, but went home OK. Three days later I start blowing pink frothy foam from the drain site in my chest. The lung was leaking air from the surgury and my lung collapsed. I went back into the hosp. for 2 weeks with a chest tube to try to resolve the pneumothorax (collaped lung). Twice more during that time the lung collapsed again. It was still leaking air from the biopsy surgury. Finally they released me saying that it looked like the leak stopped.I was home for 3 days and could tell that something was wrong. I had a sudden HUGE shortness of breath incident. Oxygen wasnt helping, I thought that I was dying. Called 911, rode the ambulance to the hosp. where the x-ray showed a 75% collapse of my lung. The doctor said that I had to have a second surgury to go back and seal the leak. After the second surgury, I thought that I was going to die in the hosp. My lungs just seemed to quit working at all. I was needing 3-4 lpm O2 just to lay still. If I tried to stand up I would collapse with choking coughing and feel as if I was suffocating. I have had this sensation a lot lately and I hate it.Anyway, I laid up in the hosp. for another week and the leak is indeed stopped, but now I cant breathe. I am a slave to this Oxygen hose and keep having to just sit or lay down and gasp like a fish on the dock. They discharged me any way, and the first day at home was nothing less than terrifying. I couldnt seem to get enough air. Now I am slowly improving , and believe that I will get back to my "normal" soon. The problem is that I feel like I have gotten a glimpse of what this is going to be like down the road, and I am afraid. How do you deal with that suffocating gasping sensation? I take some heavy duty cough suppressant which helps. Oh, by the way, I am being considered for a lung transplant.That is a whole different set of fears. I know that I am rambling here, but any words of wisdom would be greatly appreciated.

[Guest guest]

Thanks Joe, it does help talking to other people about this. I am 50 and have

two kids at home so I believe that I will take a shot on the transplant, if I

qualify.

>

> Hello all, my name is and I have had IPF for 3+ years now. Up to now, it

has not been that bad, a LOT of coughing, some shortness of breath. I agreed to

get some home O2 tanks for exertion or whatever, but was still very functional.

Then I agreed to let the doctor perform a biopsy. Big mistake. After the first

surgury, I was weak and sore and needed alittle more O2 than usual, but went

home OK. Three days later I start blowing pink frothy foam from the drain site

in my chest. The lung was leaking air from the surgury and my lung collapsed. I

went back into the hosp. for 2 weeks with a chest tube to try to resolve the

pneumothorax (collaped lung). Twice more during that time the lung collapsed

again. It was still leaking air from the biopsy surgury. Finally they released

me saying that it looked like the leak stopped.I was home for 3 days and could

tell that something was wrong. I had a sudden HUGE shortness of breath incident.

Oxygen wasnt helping, I thought that I was dying. Called 911, rode the ambulance

to the hosp. where the x-ray showed a 75% collapse of my lung. The doctor said

that I had to have a second surgury to go back and seal the leak. After the

second surgury, I thought that I was going to die in the hosp. My lungs just

seemed to quit working at all. I was needing 3-4 lpm O2 just to lay still. If I

tried to stand up I would collapse with choking coughing and feel as if I was

suffocating. I have had this sensation a lot lately and I hate it.Anyway, I laid

up in the hosp. for another week and the leak is indeed stopped, but now I cant

breathe. I am a slave to this Oxygen hose and keep having to just sit or lay

down and gasp like a fish on the dock. They discharged me any way, and the first

day at home was nothing less than terrifying. I couldnt seem to get enough air.

Now I am slowly improving , and believe that I will get back to my " normal "

soon. The problem is that I feel like I have gotten a glimpse of what this is

going to be like down the road, and I am afraid. How do you deal with that

suffocating gasping sensation? I take some heavy duty cough suppressant which

helps. Oh, by the way, I am being considered for a lung transplant.That is a

whole different set of fears. I know that I am rambling here, but any words of

wisdom would be greatly appreciated.

>

[Guest guest]

,

Welcome to Breathe Support. I wish you had no reason to want to find a group like this but since you do, I'm glad we're here.

My name is Beth and I am the moderator here. I was diagnosed with a form of pulmonary fibrosis called NSIP. I'm 50 years old and I have a son who is 24.

I had a lung biopsy in June of 2006 and though it was not a walk in the park it was easy compated to what you describe. I'm sorry you went through that and I'm happy that you feel you are finally recovering.

I'm wondering if you've received any results from the biopsy. There are many forms of fibrosis with differing prognosis.

We all become apprehensive when thinking about end of life issues with this disease. Not being able to breathe properly is extremely frightening and we deal with it every day. The good news is when it gets to that point there are things to be done that will give you ease and dramatically reduce the breathlessness and cough.

In the meantime, you have lots of days ahead where you can continue to live a reasonably normal life with accomodation to the restrictions of the illness. None of us has an expiration date. We've all had to learn a 'new normal' and make our best life possible out of it. It's not easy but it can be done.

We're all glad you are here. This is a fabulous group of people with many years of collective experience dealing with these issues. Make yourself at home, you are among friends

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, November 12, 2009 9:25:54 AMSubject: Getting scared

Hello all, my name is and I have had IPF for 3+ years now. Up to now, it has not been that bad, a LOT of coughing, some shortness of breath. I agreed to get some home O2 tanks for exertion or whatever, but was still very functional. Then I agreed to let the doctor perform a biopsy. Big mistake. After the first surgury, I was weak and sore and needed alittle more O2 than usual, but went home OK. Three days later I start blowing pink frothy foam from the drain site in my chest. The lung was leaking air from the surgury and my lung collapsed. I went back into the hosp. for 2 weeks with a chest tube to try to resolve the pneumothorax (collaped lung). Twice more during that time the lung collapsed again. It was still leaking air from the biopsy surgury. Finally they released me saying that it looked like the leak stopped.I was home for 3 days and could tell that something was wrong. I had a sudden HUGE shortness of breath incident. Oxygen wasnt

helping, I thought that I was dying. Called 911, rode the ambulance to the hosp. where the x-ray showed a 75% collapse of my lung. The doctor said that I had to have a second surgury to go back and seal the leak. After the second surgury, I thought that I was going to die in the hosp. My lungs just seemed to quit working at all. I was needing 3-4 lpm O2 just to lay still. If I tried to stand up I would collapse with choking coughing and feel as if I was suffocating. I have had this sensation a lot lately and I hate it.Anyway, I laid up in the hosp. for another week and the leak is indeed stopped, but now I cant breathe. I am a slave to this Oxygen hose and keep having to just sit or lay down and gasp like a fish on the dock. They discharged me any way, and the first day at home was nothing less than terrifying. I couldnt seem to get enough air. Now I am slowly improving , and believe that I will get back to my "normal" soon. The problem is that I feel

like I have gotten a glimpse of what this is going to be like down the road, and I am afraid. How do you deal with that suffocating gasping sensation? I take some heavy duty cough suppressant which helps. Oh, by the way, I am being considered for a lung transplant.That is a whole different set of fears. I know that I am rambling here, but any words of wisdom would be greatly appreciated.

[Guest guest]

Thank you , unfortunately the results of the biopsy were not in my favor. My

pulmonologist says that I have IPF and that there are no viable treatment

options except the transplant, which they are getting me set up with. He says

that I should be a good candidate for it. It is good to have found this forum.

>

> ,

> Welcome to Breathe Support. I wish you had no reason to want to find a group

like this but since you do, I'm glad we're here.

> My name is Beth and I am the moderator here. I was diagnosed with a form

of pulmonary fibrosis called NSIP. I'm 50 years old and I have a son who is 24.

> I had a lung biopsy in June of 2006 and though it was not a walk in the park

it was easy compated to what you describe. I'm sorry you went through that

and I'm happy that you feel you are finally recovering.

> I'm wondering if you've received any results from the biopsy. There are many

forms of fibrosis with differing prognosis.

> We all become apprehensive when thinking about end of life issues with this

disease. Not being able to breathe properly is extremely frightening and we

deal with it every day. The good news is when it gets to that point there are

things to be done that will give you ease and dramatically reduce the

breathlessness and cough.

>

> In the meantime, you have lots of days ahead where you can continue to live a

reasonably normal life with accomodation to the restrictions of the

illness. None of us has an expiration date. We've all had to learn a 'new

normal' and make our best life possible out of it. It's not easy but it can be

done.

>

> We're all glad you are here. This is a fabulous group of people with many

years of collective experience dealing with these issues. Make yourself at home,

you are among friends

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>  

>  

>

>

>

>

> ________________________________

>

> To: Breathe-Support

> Sent: Thu, November 12, 2009 9:25:54 AM

> Subject: Getting scared

>

>  

> Hello all, my name is and I have had IPF for 3+ years now. Up to now, it

has not been that bad, a LOT of coughing, some shortness of breath. I agreed to

get some home O2 tanks for exertion or whatever, but was still very functional.

Then I agreed to let the doctor perform a biopsy. Big mistake. After the first

surgury, I was weak and sore and needed alittle more O2 than usual, but went

home OK. Three days later I start blowing pink frothy foam from the drain site

in my chest. The lung was leaking air from the surgury and my lung collapsed. I

went back into the hosp. for 2 weeks with a chest tube to try to resolve the

pneumothorax (collaped lung). Twice more during that time the lung collapsed

again. It was still leaking air from the biopsy surgury. Finally they released

me saying that it looked like the leak stopped.I was home for 3 days and could

tell that something was wrong. I had a sudden HUGE shortness of breath incident.

Oxygen wasnt helping,

> I thought that I was dying. Called 911, rode the ambulance to the hosp. where

the x-ray showed a 75% collapse of my lung. The doctor said that I had to have a

second surgury to go back and seal the leak. After the second surgury, I thought

that I was going to die in the hosp. My lungs just seemed to quit working at

all. I was needing 3-4 lpm O2 just to lay still. If I tried to stand up I would

collapse with choking coughing and feel as if I was suffocating. I have had this

sensation a lot lately and I hate it.Anyway, I laid up in the hosp. for another

week and the leak is indeed stopped, but now I cant breathe. I am a slave to

this Oxygen hose and keep having to just sit or lay down and gasp like a fish on

the dock. They discharged me any way, and the first day at home was nothing less

than terrifying. I couldnt seem to get enough air. Now I am slowly improving ,

and believe that I will get back to my " normal " soon. The problem is that I feel

like I

> have gotten a glimpse of what this is going to be like down the road, and I

am afraid. How do you deal with that suffocating gasping sensation? I take some

heavy duty cough suppressant which helps. Oh, by the way, I am being considered

for a lung transplant.That is a whole different set of fears. I know that I am

rambling here, but any words of wisdom would be greatly appreciated.

>

[Guest guest]

welcome

sorry you need us

but glad you found us

sorry to hear about your biopsy experience

my docs do not recommend a biopsy

have been evaluated for transplant, was on list last year, increase/change in meds improved, so now inactive re: transplant

yes, transplant is scary, however, there are a lot of success stories --

continue to recover from the biopsy

people say that things do improve

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Getting scaredTo: Breathe-Support Date: Thursday, November 12, 2009, 9:25 AM

Hello all, my name is and I have had IPF for 3+ years now. Up to now, it has not been that bad, a LOT of coughing, some shortness of breath. I agreed to get some home O2 tanks for exertion or whatever, but was still very functional. Then I agreed to let the doctor perform a biopsy. Big mistake. After the first surgury, I was weak and sore and needed alittle more O2 than usual, but went home OK. Three days later I start blowing pink frothy foam from the drain site in my chest. The lung was leaking air from the surgury and my lung collapsed. I went back into the hosp. for 2 weeks with a chest tube to try to resolve the pneumothorax (collaped lung). Twice more during that time the lung collapsed again. It was still leaking air from the biopsy surgury. Finally they released me saying that it looked like the leak stopped.I was home for 3 days and could tell that something was wrong. I had a sudden HUGE shortness of breath incident. Oxygen wasnt

helping, I thought that I was dying. Called 911, rode the ambulance to the hosp. where the x-ray showed a 75% collapse of my lung. The doctor said that I had to have a second surgury to go back and seal the leak. After the second surgury, I thought that I was going to die in the hosp. My lungs just seemed to quit working at all. I was needing 3-4 lpm O2 just to lay still. If I tried to stand up I would collapse with choking coughing and feel as if I was suffocating. I have had this sensation a lot lately and I hate it.Anyway, I laid up in the hosp. for another week and the leak is indeed stopped, but now I cant breathe. I am a slave to this Oxygen hose and keep having to just sit or lay down and gasp like a fish on the dock. They discharged me any way, and the first day at home was nothing less than terrifying. I couldnt seem to get enough air. Now I am slowly improving , and believe that I will get back to my "normal" soon. The problem is that I feel

like I have gotten a glimpse of what this is going to be like down the road, and I am afraid. How do you deal with that suffocating gasping sensation? I take some heavy duty cough suppressant which helps. Oh, by the way, I am being considered for a lung transplant.That is a whole different set of fears. I know that I am rambling here, but any words of wisdom would be greatly appreciated.

[Guest guest]

find out if there is a transplant support group at the transplant center that you will go to

it has been a big help to me

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Getting scaredTo: Breathe-Support Date: Thursday, November 12, 2009, 10:11 AM

Thanks Joe, it does help talking to other people about this. I am 50 and have two kids at home so I believe that I will take a shot on the transplant, if I qualify.>> Hello all, my name is and I have had IPF for 3+ years now. Up to now, it has not been that bad, a LOT of coughing, some shortness of breath. I agreed to get some home O2 tanks for exertion or whatever, but was still very functional. Then I agreed to let the doctor perform a biopsy. Big mistake. After the first surgury, I was weak and sore and needed alittle more O2 than usual, but went home OK. Three days later I start blowing pink frothy foam from the drain site in my chest. The lung was leaking air

from the surgury and my lung collapsed. I went back into the hosp. for 2 weeks with a chest tube to try to resolve the pneumothorax (collaped lung). Twice more during that time the lung collapsed again. It was still leaking air from the biopsy surgury. Finally they released me saying that it looked like the leak stopped.I was home for 3 days and could tell that something was wrong. I had a sudden HUGE shortness of breath incident. Oxygen wasnt helping, I thought that I was dying. Called 911, rode the ambulance to the hosp. where the x-ray showed a 75% collapse of my lung. The doctor said that I had to have a second surgury to go back and seal the leak. After the second surgury, I thought that I was going to die in the hosp. My lungs just seemed to quit working at all. I was needing 3-4 lpm O2 just to lay still. If I tried to stand up I would collapse with choking coughing and feel as if I was suffocating. I have had this sensation a lot lately and I

hate it.Anyway, I laid up in the hosp. for another week and the leak is indeed stopped, but now I cant breathe. I am a slave to this Oxygen hose and keep having to just sit or lay down and gasp like a fish on the dock. They discharged me any way, and the first day at home was nothing less than terrifying. I couldnt seem to get enough air. Now I am slowly improving , and believe that I will get back to my "normal" soon. The problem is that I feel like I have gotten a glimpse of what this is going to be like down the road, and I am afraid. How do you deal with that suffocating gasping sensation? I take some heavy duty cough suppressant which helps. Oh, by the way, I am being considered for a lung transplant.That is a whole different set of fears. I know that I am rambling here, but any words of wisdom would be greatly appreciated.>__________________________________________________

[Guest guest]

,Welcome to the board, sorry you needed us. I can relate in some ways as my journey with PF started with a week on a ventilator But that was 8 years ago in Jan and I'm still kicking so don't think that you are going anywhere soon. I do know the feeling you talk about because there is nothing worse that to being sucking in the biggest breath you can and feel like there was no oxygen in it at all. I need 8 liters on exertion and there are several others who are on high liter flows when moving also. First off just cuz they sent you home on 3 to 4 liters doesn't mean you can't turn it up. It sure sounds like your sats are way too low. If you don't have an oximeter get one. There is a website where you can get on for 95 dollars, search the messages for website oximeter and it should come up. Next do Pursed lip breathing, in through the nose out through pursed lips. It helps calm you if nothing else. You are probably having anxiety because they sent you home once and you couldn't breath so you are anticipating problems that makes you SOB all by itself. If you can't stay calm ask the doctor for a few days of xanex to help you relax. Give yourself time to heal.Dyane PHoenix ipf 02>> Hello all, my name is and I have had IPF for 3+ years now. Up to now, it has not been that bad, a LOT of coughing, some shortness of breath. I agreed to get some home O2 tanks for exertion or whatever, but was still very functional. Then I agreed to let the doctor perform a biopsy. Big mistake. After the first surgury, I was weak and sore and needed alittle more O2 than usual, but went home OK. Three days later I start blowing pink frothy foam from the drain site in my chest. The lung was leaking air from the surgury and my lung collapsed. I went back into the hosp. for 2 weeks with a chest tube to try to resolve the pneumothorax (collaped lung). Twice more during that time the lung collapsed again. It was still leaking air from the biopsy surgury. Finally they released me saying that it looked like the leak stopped.I was home for 3 days and could tell that something was wrong. I had a sudden HUGE shortness of breath incident. Oxygen wasnt helping, I thought that I was dying. Called 911, rode the ambulance to the hosp. where the x-ray showed a 75% collapse of my lung. The doctor said that I had to have a second surgury to go back and seal the leak. After the second surgury, I thought that I was going to die in the hosp. My lungs just seemed to quit working at all. I was needing 3-4 lpm O2 just to lay still. If I tried to stand up I would collapse with choking coughing and feel as if I was suffocating. I have had this sensation a lot lately and I hate it.Anyway, I laid up in the hosp. for another week and the leak is indeed stopped, but now I cant breathe. I am a slave to this Oxygen hose and keep having to just sit or lay down and gasp like a fish on the dock. They discharged me any way, and the first day at home was nothing less than terrifying. I couldnt seem to get enough air. Now I am slowly improving , and believe that I will get back to my "normal" soon. The problem is that I feel like I have gotten a glimpse of what this is going to be like down the road, and I am afraid. How do you deal with that suffocating gasping sensation? I take some heavy duty cough suppressant which helps. Oh, by the way, I am being considered for a lung transplant.That is a whole different set of fears. I know that I am rambling here, but any words of wisdom would be greatly appreciated.>

[Guest guest]

dyanne = scott

another way to think of pursed lip breathing is to

"smell the roses, blow out the candles"

i have a nonin oximeter -- look up nonin on line to see what is availble

i have the 9500

they also have a less expensive model now

some people on line will give you a website for an even less expensive model

having an oximeter helps you know when you need to use the oxygen and when to increase the lpms

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Getting scaredTo: Breathe-Support Date: Thursday, November 12, 2009, 12:12 PM

,Welcome to the board, sorry you needed us. I can relate in some ways as my journey with PF started with a week on a ventilator But that was 8 years ago in Jan and I'm still kicking so don't think that you are going anywhere soon. I do know the feeling you talk about because there is nothing worse that to being sucking in the biggest breath you can and feel like there was no oxygen in it at all. I need 8 liters on exertion and there are several others who are on high liter flows when moving also. First off just cuz they sent you home on 3 to 4 liters doesn't mean you can't turn it up. It sure sounds like your sats are way too low. If you don't have an oximeter get one. There is a website where you can get on for 95 dollars, search the messages for website oximeter and it should come up. Next do Pursed lip breathing, in through the nose out through pursed

lips. It helps calm you if nothing else. You are probably having anxiety because they sent you home once and you couldn't breath so you are anticipating problems that makes you SOB all by itself. If you can't stay calm ask the doctor for a few days of xanex to help you relax. Give yourself time to heal.Dyane PHoenix ipf 02>> Hello all, my name is and I have had IPF for 3+ years now. Up to now, it has not been that bad, a LOT of coughing, some shortness of breath. I agreed to get some home O2 tanks for exertion or whatever, but was still very functional. Then I agreed to let the doctor perform a biopsy. Big mistake. After the first surgury, I was weak and sore and needed alittle more O2 than usual, but went home OK. Three days later I start blowing pink frothy foam from the drain site in my chest.

The lung was leaking air from the surgury and my lung collapsed. I went back into the hosp. for 2 weeks with a chest tube to try to resolve the pneumothorax (collaped lung). Twice more during that time the lung collapsed again. It was still leaking air from the biopsy surgury. Finally they released me saying that it looked like the leak stopped.I was home for 3 days and could tell that something was wrong. I had a sudden HUGE shortness of breath incident. Oxygen wasnt helping, I thought that I was dying. Called 911, rode the ambulance to the hosp. where the x-ray showed a 75% collapse of my lung. The doctor said that I had to have a second surgury to go back and seal the leak. After the second surgury, I thought that I was going to die in the hosp. My lungs just seemed to quit working at all. I was needing 3-4 lpm O2 just to lay still. If I tried to stand up I would collapse with choking coughing and feel as if I was suffocating. I have had this

sensation a lot lately and I hate it.Anyway, I laid up in the hosp. for another week and the leak is indeed stopped, but now I cant breathe. I am a slave to this Oxygen hose and keep having to just sit or lay down and gasp like a fish on the dock. They discharged me any way, and the first day at home was nothing less than terrifying. I couldnt seem to get enough air. Now I am slowly improving , and believe that I will get back to my "normal" soon. The problem is that I feel like I have gotten a glimpse of what this is going to be like down the road, and I am afraid. How do you deal with that suffocating gasping sensation? I take some heavy duty cough suppressant which helps. Oh, by the way, I am being considered for a lung transplant.That is a whole different set of fears. I know that I am rambling here, but any words of wisdom would be greatly appreciated.>

[Guest guest]

scott

first of all -- there is no such thing as a stupid question

you need to get an oximeter (the thing you put on your finger)

-- it will tell you if you need supplemental o2 or if you need to increase or decrease the liters per minute

think of supplemental oxygen as your best friend

everybody breathes oxygen all the time

with compromised lungs, we need a higher concentration (i think i said that correctly)

your lungs will not get lazy

the lung tissue is damaged

it is stiff

at the microscopic level the exchange of gases is extremely difficult

your heart pumps oxygen into your lungs

your heart has to work harder to get the oxygen into the lungs

to prevent damage to your heart, you need the supplemental oxygen

if your oxygen level -- saturation -- SAT for short -- falls below a certain number, the other organs can be damaged

i think 88% is the number, i get upset if it falls below 90%

one of the weird things with this !@#$% disease is that we can sit and rest and our SAT will be in the high 90's

but as soon as we move, the SAT level drops

my doctor wants me to use O2 for exertion and sleep

eventually your doctor might prescribe an overnight oximeter test

there is something about the breathing becoming shallow when we sleep, therefore we need to use o2 while sleeping

you have a lot of questions for your pulmonary doctor, call him up

it might be possible that when you are healed from your biopsy, you might be able to use less oxygen, but i have no experience with that

learning how to use the oxygen will take time, trial and error

hang in there, you will get it

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Getting scaredTo: Breathe-Support Date: Thursday, November 12, 2009, 2:08 PM

this is probably a really stupid question, but should I be worried about how much O2 I am using? If I use too much will my lungs get "lazy" and not be able to function otherwise? When I was trying to get it together at the hosp. to come home, the nurses would say that I needed to "wean" myself from the O2. I was clinging to it and would freak out if they tried to turn it down. I was gasping! Now I am home and with the aid of my hycodan cough suppressant, I can sit and walk slowly with no O2, but I get very dizzy. I dont really know how to use this oxygen, I guess.> > > Hello all, my name is and I have had IPF for 3+ years now. Up > > to now, it has not been that bad, a LOT of coughing, some shortness > > of breath. I agreed to get some home O2 tanks for exertion or > > whatever, but was still very functional. Then I agreed to let the > > doctor perform a biopsy. Big mistake. After the first surgury, I was > > weak and sore and needed

alittle more O2 than usual, but went home > > OK. Three days later I start blowing pink frothy foam from the drain > > site in my chest. The lung was leaking air from the surgury and my > > lung collapsed. I went back into the hosp. for 2 weeks with a chest > > tube to try to resolve the pneumothorax (collaped lung). Twice more > > during that time the lung collapsed again. It was still leaking air > > from the biopsy surgury. Finally they released me saying that it > > looked like the leak stopped.I was home for 3 days and could tell > > that something was wrong. I had a sudden HUGE shortness of breath > > incident. Oxygen wasnt helping, I thought that I was dying. Called > > 911, rode the ambulance to the hosp. where the x-ray showed a 75% > > collapse of my lung. The doctor said that I had to have a second > > surgury to go back and

seal the leak. After the second surgury, I > > thought that I was going to die in the hosp. My lungs just seemed to > > quit working at all. I was needing 3-4 lpm O2 just to lay still. If > > I tried to stand up I would collapse with choking coughing and feel > > as if I was suffocating. I have had this sensation a lot lately and > > I hate it.Anyway, I laid up in the hosp. for another week and the > > leak is indeed stopped, but now I cant breathe. I am a slave to this > > Oxygen hose and keep having to just sit or lay down and gasp like a > > fish on the dock. They discharged me any way, and the first day at > > home was nothing less than terrifying. I couldnt seem to get enough > > air. Now I am slowly improving , and believe that I will get back to > > my "normal" soon. The problem is that I feel like I have gotten a > > glimpse of

what this is going to be like down the road, and I am > > afraid. How do you deal with that suffocating gasping sensation? I > > take some heavy duty cough suppressant which helps. Oh, by the way, > > I am being considered for a lung transplant.That is a whole > > different set of fears. I know that I am rambling here, but any > > words of wisdom would be greatly appreciated.> >> >> >>

[Guest guest]

Dyane,

The nurses who told that are just downright ignorant regarding restrictive lung disease. Their experience is almost exclusively with obstructive lung disease like emphysema and COPD. With those diseases you can do yourself harm by using too much oxygen. That is NOT the case with us.

We need, what we need to keep our levels above 90, full stop. , buy yourself an oximeter asap. There is an FDA approved oximeter available here for $65 http://www.portablenebs.com/choiceoximeter.htm

You need to be able to monitor your oxygen levels so that you can use your oxygen intelligently. You should not be gasping for breath. suggested you call and request a 24 hour oximeter test. That is an excellent suggestion. You will get an idea what you need under the different circumstances of your day.

Keep asking questions. We're here to help!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, November 12, 2009 2:40:43 PMSubject: Re: Getting scared

,No no no! It is so obvious you need more when you move I want to come turn it up for you. My o2 provider just freaks when I tell her I am on 8 lpm on exertion, they worry about getting out the co2,but co2 is not our problem O2 IS and that is what I need even though I can turn it down to 2-3lpm when I am sitting still. Turn it up until you don't feel the 'feeling'. When your lungs heal you may be able to turn it down but right now your lungs are still hurting. I like those nurses to wean themselves from o2, maybe stick a bag over their heads. (and no I know they mean well Beth but come on if he was terrified why would they tell him that?) Dyane Phoenix ipf 02ps Look at your fingernails. If they have any medium to dark purple or blue tinge when you are walking you need more oxygen.> > > > > Hello all, my name is and I have had IPF for 3+ years now. Up > > > to now, it has not been that bad, a LOT of coughing, some shortness > > > of breath. I agreed to get some home O2 tanks for exertion or > > > whatever, but was still very functional. Then I agreed to let the > > > doctor perform a biopsy. Big mistake. After the first surgury, I was > > > weak and sore and needed alittle more O2 than usual,

but went home > > > OK. Three days later I start blowing pink frothy foam from the drain > > > site in my chest. The lung was leaking air from the surgury and my > > > lung collapsed. I went back into the hosp. for 2 weeks with a chest > > > tube to try to resolve the pneumothorax (collaped lung). Twice more > > > during that time the lung collapsed again. It was still leaking air > > > from the biopsy surgury. Finally they released me saying that it > > > looked like the leak stopped.I was home for 3 days and could tell > > > that something was wrong. I had a sudden HUGE shortness of breath > > > incident. Oxygen wasnt helping, I thought that I was dying. Called > > > 911, rode the ambulance to the hosp. where the x-ray showed a 75% > > > collapse of my lung. The doctor said that I had to have a second >

> > surgury to go back and seal the leak. After the second surgury, I > > > thought that I was going to die in the hosp. My lungs just seemed to > > > quit working at all. I was needing 3-4 lpm O2 just to lay still. If > > > I tried to stand up I would collapse with choking coughing and feel > > > as if I was suffocating. I have had this sensation a lot lately and > > > I hate it.Anyway, I laid up in the hosp. for another week and the > > > leak is indeed stopped, but now I cant breathe. I am a slave to this > > > Oxygen hose and keep having to just sit or lay down and gasp like a > > > fish on the dock. They discharged me any way, and the first day at > > > home was nothing less than terrifying. I couldnt seem to get enough > > > air. Now I am slowly improving , and believe that I will get back to > > > my

"normal" soon. The problem is that I feel like I have gotten a > > > glimpse of what this is going to be like down the road, and I am > > > afraid. How do you deal with that suffocating gasping sensation? I > > > take some heavy duty cough suppressant which helps. Oh, by the way, > > > I am being considered for a lung transplant.That is a whole > > > different set of fears. I know that I am rambling here, but any > > > words of wisdom would be greatly appreciated.> > >> > >> > >> >>

[Guest guest]

thanks Dyanne

for the tip about the fingernails

i wonder if that is always true because when i am cold, my fingers turn blue even with the o2, put them under warm water, and they turn pink

eagerly waiting for a response from Beth

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Getting scaredTo: Breathe-Support Date: Thursday, November 12, 2009, 2:40 PM

,No no no! It is so obvious you need more when you move I want to come turn it up for you. My o2 provider just freaks when I tell her I am on 8 lpm on exertion, they worry about getting out the co2,but co2 is not our problem O2 IS and that is what I need even though I can turn it down to 2-3lpm when I am sitting still. Turn it up until you don't feel the 'feeling'. When your lungs heal you may be able to turn it down but right now your lungs are still hurting. I like those nurses to wean themselves from o2, maybe stick a bag over their heads. (and no I know they mean well Beth but come on if he was terrified why would they tell him that?) Dyane Phoenix ipf 02ps Look at your fingernails. If they have any medium to dark purple or blue tinge when you are walking you need more oxygen.> > > > > Hello all, my name is and I have had IPF for 3+ years now. Up > > > to now, it has not been that bad, a LOT of coughing, some shortness > > > of breath. I agreed to get some home O2 tanks for exertion or > > > whatever, but was still very functional. Then I agreed to let the > > > doctor perform a biopsy. Big mistake. After the first surgury, I was > > > weak and sore and needed alittle more O2 than usual,

but went home > > > OK. Three days later I start blowing pink frothy foam from the drain > > > site in my chest. The lung was leaking air from the surgury and my > > > lung collapsed. I went back into the hosp. for 2 weeks with a chest > > > tube to try to resolve the pneumothorax (collaped lung). Twice more > > > during that time the lung collapsed again. It was still leaking air > > > from the biopsy surgury. Finally they released me saying that it > > > looked like the leak stopped.I was home for 3 days and could tell > > > that something was wrong. I had a sudden HUGE shortness of breath > > > incident. Oxygen wasnt helping, I thought that I was dying. Called > > > 911, rode the ambulance to the hosp. where the x-ray showed a 75% > > > collapse of my lung. The doctor said that I had to have a second >

> > surgury to go back and seal the leak. After the second surgury, I > > > thought that I was going to die in the hosp. My lungs just seemed to > > > quit working at all. I was needing 3-4 lpm O2 just to lay still. If > > > I tried to stand up I would collapse with choking coughing and feel > > > as if I was suffocating. I have had this sensation a lot lately and > > > I hate it.Anyway, I laid up in the hosp. for another week and the > > > leak is indeed stopped, but now I cant breathe. I am a slave to this > > > Oxygen hose and keep having to just sit or lay down and gasp like a > > > fish on the dock. They discharged me any way, and the first day at > > > home was nothing less than terrifying. I couldnt seem to get enough > > > air. Now I am slowly improving , and believe that I will get back to > > > my

"normal" soon. The problem is that I feel like I have gotten a > > > glimpse of what this is going to be like down the road, and I am > > > afraid. How do you deal with that suffocating gasping sensation? I > > > take some heavy duty cough suppressant which helps. Oh, by the way, > > > I am being considered for a lung transplant.That is a whole > > > different set of fears. I know that I am rambling here, but any > > > words of wisdom would be greatly appreciated.> > >> > >> > >> >>

[Guest guest]

Joyce,

It's true in general however when someone has Reynaud's or some other circulation problem in their extremities they may not have pink finger or toe nails and yet their saturation may be ok.

But in general, if you have pink nails your sats are fine, if they are blue you may need to turn up the oxygen.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, November 12, 2009 4:30:24 PMSubject: Re: Re: Getting scared

thanks Dyanne

for the tip about the fingernails

i wonder if that is always true because when i am cold, my fingers turn blue even with the o2, put them under warm water, and they turn pink

eagerly waiting for a response from Beth

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: DyaneB <dyane.billings@ ball-mcgraw. com>Subject: Re: Getting scaredTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 12, 2009, 2:40 PM

,No no no! It is so obvious you need more when you move I want to come turn it up for you. My o2 provider just freaks when I tell her I am on 8 lpm on exertion, they worry about getting out the co2,but co2 is not our problem O2 IS and that is what I need even though I can turn it down to 2-3lpm when I am sitting still. Turn it up until you don't feel the 'feeling'. When your lungs heal you may be able to turn it down but right now your lungs are still hurting. I like those nurses to wean themselves from o2, maybe stick a bag over their heads. (and no I know they mean well Beth but come on if he was terrified why would they tell him that?) Dyane Phoenix ipf 02ps Look at your fingernails. If they have any medium to dark purple or blue tinge when you are walking you need more oxygen.> > > > > Hello all, my name is and I have had IPF for 3+ years now. Up > > > to now, it has not been that bad, a LOT of coughing, some shortness > > > of breath. I agreed to get some home O2 tanks for exertion or > > > whatever, but was still very functional. Then I agreed to let the > > > doctor perform a biopsy. Big mistake. After the first surgury, I was > > > weak and sore and needed alittle more O2 than usual,

but went home > > > OK. Three days later I start blowing pink frothy foam from the drain > > > site in my chest. The lung was leaking air from the surgury and my > > > lung collapsed. I went back into the hosp. for 2 weeks with a chest > > > tube to try to resolve the pneumothorax (collaped lung). Twice more > > > during that time the lung collapsed again. It was still leaking air > > > from the biopsy surgury. Finally they released me saying that it > > > looked like the leak stopped.I was home for 3 days and could tell > > > that something was wrong. I had a sudden HUGE shortness of breath > > > incident. Oxygen wasnt helping, I thought that I was dying. Called > > > 911, rode the ambulance to the hosp. where the x-ray showed a 75% > > > collapse of my lung. The doctor said that I had to have a second >

> > surgury to go back and seal the leak. After the second surgury, I > > > thought that I was going to die in the hosp. My lungs just seemed to > > > quit working at all. I was needing 3-4 lpm O2 just to lay still. If > > > I tried to stand up I would collapse with choking coughing and feel > > > as if I was suffocating. I have had this sensation a lot lately and > > > I hate it.Anyway, I laid up in the hosp. for another week and the > > > leak is indeed stopped, but now I cant breathe. I am a slave to this > > > Oxygen hose and keep having to just sit or lay down and gasp like a > > > fish on the dock. They discharged me any way, and the first day at > > > home was nothing less than terrifying. I couldnt seem to get enough > > > air. Now I am slowly improving , and believe that I will get back to > > > my

"normal" soon. The problem is that I feel like I have gotten a > > > glimpse of what this is going to be like down the road, and I am > > > afraid. How do you deal with that suffocating gasping sensation? I > > > take some heavy duty cough suppressant which helps. Oh, by the way, > > > I am being considered for a lung transplant.That is a whole > > > different set of fears. I know that I am rambling here, but any > > > words of wisdom would be greatly appreciated.> > >> > >> > >> >>

[Guest guest]

Pink Joyce,

When you are cold the capillaries constrict which is why your fingertips

turn blue but when your fingers are warm and the color of the nail bed

by the half moon thingy will turn a lovey shade of violet or blue if

your sats are in the upper 70's or lower. Very pretty but very scarey.

Dyane

> > >

> > > > Hello all, my name is and I have had IPF for 3+ years now.

Up

> > > > to now, it has not been that bad, a LOT of coughing, some

shortness

> > > > of breath. I agreed to get some home O2 tanks for exertion or

> > > > whatever, but was still very functional. Then I agreed to let

the

> > > > doctor perform a biopsy. Big mistake. After the first surgury, I

was

> > > > weak and sore and needed alittle more O2 than usual, but went

home

> > > > OK. Three days later I start blowing pink frothy foam from the

drain

> > > > site in my chest. The lung was leaking air from the surgury and

my

> > > > lung collapsed. I went back into the hosp. for 2 weeks with a

chest

> > > > tube to try to resolve the pneumothorax (collaped lung). Twice

more

> > > > during that time the lung collapsed again. It was still leaking

air

> > > > from the biopsy surgury. Finally they released me saying that it

> > > > looked like the leak stopped.I was home for 3 days and could

tell

> > > > that something was wrong. I had a sudden HUGE shortness of

breath

> > > > incident. Oxygen wasnt helping, I thought that I was dying.

Called

> > > > 911, rode the ambulance to the hosp. where the x-ray showed a

75%

> > > > collapse of my lung. The doctor said that I had to have a second

> > > > surgury to go back and seal the leak. After the second surgury,

I

> > > > thought that I was going to die in the hosp. My lungs just

seemed to

> > > > quit working at all. I was needing 3-4 lpm O2 just to lay still.

If

> > > > I tried to stand up I would collapse with choking coughing and

feel

> > > > as if I was suffocating. I have had this sensation a lot lately

and

> > > > I hate it.Anyway, I laid up in the hosp. for another week and

the

> > > > leak is indeed stopped, but now I cant breathe. I am a slave to

this

> > > > Oxygen hose and keep having to just sit or lay down and gasp

like a

> > > > fish on the dock. They discharged me any way, and the first day

at

> > > > home was nothing less than terrifying. I couldnt seem to get

enough

> > > > air. Now I am slowly improving , and believe that I will get

back to

> > > > my " normal " soon. The problem is that I feel like I have gotten

a

> > > > glimpse of what this is going to be like down the road, and I am

> > > > afraid. How do you deal with that suffocating gasping sensation?

I

> > > > take some heavy duty cough suppressant which helps. Oh, by the

way,

> > > > I am being considered for a lung transplant.That is a whole

> > > > different set of fears. I know that I am rambling here, but any

> > > > words of wisdom would be greatly appreciated.

> > > >

> > > >

> > > >

> > >

> >

>