Re: Carolyn and Joyce

[Guest guest]

Thank you so much for your words of encouragement. I see my dr next week, ( tried to get in this week but hes booked) and I'm gonna ask him for something stronger for my depression. I'm also still very wheezy and I'm coughing up junk, yeck. The U of MI dr said as long as I wasn't running a fever or having trouble breathing, I should be ok without getting on a antibotic, does that make sense? He said I dont wanna get behind the 8 ball and get sick but if he gives me antibotics and I dont need them yet, then when I do, they wont work. I askedmy husband tonite if he wanted toput me in a hospice center but he said absolutely not, I told him I felt like a albatros around his neck, and my dear brother, well, I'm driving him crazy and I love him so much, hes been there for me all the way. But after reading what is going thru, it was like a slap in the face to me, its like wake up girl, she has to face this with his child, so I ask all of you and my Savior above to forgive me of the feelings of self pity. Please continute to pray for me, I crave and need your prayers and I always prays for ya'll....

LOve always,

Vicky81856 IPH/PF PH 4/06

[Guest guest]

Vicky,

My doctor has a different approach to antibiotics. He keeps me supplied with them and tells me that when my body tells me that I need them....take them. He says to 'err on the side of caution'. Some signs of infection besides a high temperature are: chills, more mucus coming up than usual, discolored mucus and chills. Sometimes it is just a general feeling of weakness and sickness. My temperature runs low and I don't often run a temp. 99.5 is high for me. There are multitudes of antibiotics and more being developed. If one stops working, on to the next one. An infection can kill us. It is so strange how doctors are so different.

Vicky if your musus becomes thicker or discolored....call the doc back and tell him. Take Mucinex or another expectorant to keep it thin.

Fight, fight, fight!!! I need you here!

Hugs, Joyce PF19997 Bronchiectasis 2004 >> Thank you so much for your words of encouragement. I see my dr next week, ( > tried to get in this week but hes booked) and I'm gonna ask him for something > stronger for my depression. I'm also still very wheezy and I'm coughing up > junk, yeck. The U of MI dr said as long as I wasn't running a fever or having > trouble breathing, I should be ok without getting on a antibotic, does that > make sense? He said I dont wanna get behind the 8 ball and get sick but if he > gives me antibotics and I dont need them yet, then when I do, they wont work. > I askedmy husband tonite if he wanted toput me in a hospice center but he > said absolutely not, I told him I felt like a albatros around his neck, and my > dear brother, well, I'm driving him crazy and I love him so much, hes been > there for me all the way. But after reading what is going thru, it was > like a slap in the face to me, its like wake up girl, she has to face this with > his child, so I ask all of you and my Savior above to forgive me of the > feelings of self pity. Please continute to pray for me, I crave and need your > prayers and I always prays for ya'll....> > LOve always,> > Vicky81856 IPH/PF PH 4/06>

[Guest guest]

Dear Joyce:

The key word in this discussion is "Infection". Antibiotics are to be used for infections period. The problem lies when persons use them whenever they dont feel well regardless of the cause. Some people get viruses and take them and of course they dont work for them, but it makes the person think they are getting help from them. Other people take them for the common cold and once again they do not work for that. They do however work for a secondary infection that may develop from the cold. Unfortunately the majority of persons cannot tell the difference between an infection and a virus or other problem, so they take antibiotics recklessly and then when they do have an infection, their body has already developed a resistance to most antibiotics and they do not work for them.

While it is true new antibiotics are often being released, the problem lies in that they are in a few families of drugs such as Penicillins, Sulfas, etc. So there may be a hundred antibiotics but only 10 families. When one develops a resistance to one Penicillin often most or none of that family of them will work for that person.

My sister is allergic to most antibiotics and unfortunately when she gets an infection she often suffers for a long long time with it and only through her own good immunity does she get through it. What happens when we build up a resistance to a family of antibiotics and have a low immunity to begin with, such as with lung disease, is that we end up with a raging infection with little or no means to battle it. Not a good place to be in.

It seems you and your doctor realize that you can tell when an "honest-to-good" infection is starting and you take an antibiotic the correct way. So while you may be an exception to the rule, I still stand with the majority of the medical community and say, for the rest of us, take antibiotics sparingly, for true infections only, so they will work when you need them as you are right in saying an infection can kill us and in the end that is what does kill us, an infection such as pneumonia.

Carolyn

-- Re: Carolyn and Joyce

Vicky,

My doctor has a different approach to antibiotics. He keeps me supplied with them and tells me that when my body tells me that I need them....take them. He says to 'err on the side of caution'. Some signs of infection besides a high temperature are: chills, more mucus coming up than usual, discolored mucus and chills. Sometimes it is just a general feeling of weakness and sickness. My temperature runs low and I don't often run a temp. 99.5 is high for me. There are multitudes of antibiotics and more being developed. If one stops working, on to the next one. An infection can kill us. It is so strange how doctors are so different.

Vicky if your musus becomes thicker or discolored....call the doc back and tell him. Take Mucinex or another expectorant to keep it thin.

Fight, fight, fight!!! I need you here!

Hugs, Joyce PF19997 Bronchiectasis 2004 >> Thank you so much for your words of encouragement. I see my dr next week, ( > tried to get in this week but hes booked) and I'm gonna ask him for something > stronger for my depression. I'm also still very wheezy and I'm coughing up > junk, yeck. The U of MI dr said as long as I wasn't running a fever or having > trouble breathing, I should be ok without getting on a antibotic, does that > make sense? He said I dont wanna get behind the 8 ball and get sick but if he > gives me antibotics and I dont need them yet, then when I do, they wont work. > I askedmy husband tonite if he wanted toput me in a hospice center but he > said absolutely not, I told him I felt like a albatros around his neck, and my > dear brother, well, I'm driving him crazy and I love him so much, hes been > there for me all the way. But after reading what is going thru, it was > like a slap in the face to me, its like wake up girl, she has to face this with > his child, so I ask all of you and my Savior above to forgive me of the > feelings of self pity. Please continute to pray for me, I crave and need your > prayers and I always prays for ya'll....> > LOve always,> > Vicky81856 IPH/PF PH 4/06>

[Guest guest]

Carolyn,

Most people with Bronchiectasis are on antibiotics almost continually. Most end up in the hospital several times a year on IV abs. Mucus pools in the bronchia where the walls are stretched and mishapen. The cilia becomes disabled so that mucus is not moved up and out of the airways. I use a percussion vest, nebs and postural drainage just to get the gunk out. At that I cough up great amounts of mucus. As you probably know, lungs filled with this crud develop infection fast. Waiting a day for antibiotics is hazardous. By the time I get to the doc and give sputum samples, etc. the bug has me by the throat. I keep the abs here and I am cautious in using them. I am very aware of the signs.

I agree that misuse of antibiotics is a dangerous thing. But, you got to admit that most of us with this lung disease are in a most dangerous situation. We have limited lung space and pneumonia or infection is our worst enemy. My doctor treats the threat of infection like a threat of nuclear attack. He wants me to be ready, alert and armed as soon as the enemy approaches. He leaves it up to me to be smart enough to know my own body and my own signs. So far, I have been hospitalized only one time for pneumonia. Chronic pseudomona and other bacteria are common to Bronchiectasis, but so far I have not developed any of these. I get minor infections and these take me to my knees. My lung space is so limited that he told me one more big round of pneumonia would kill me. So...what are my options here? This past year I used abs 4 times. Every time I knew my signs, made up my own mind and every time it was justified. Each time I got so sick that had I not started on the abs, I would have ended up in the hospital. For me, quick action works. I am so glad he allows me the option to self treat. He must be doing something right, here I am about six years past my date of expected demise.

You mentioned immunity. Well, because I take immunosuppressants my immune system is not strong enough to fight back. I am fighting too many wars and it is a mess. I know I am not typical. I don't advocate everyone be allowed to self treat with abs, but for me in my condition....it is a must.

Carolyn, you have been such a blessing to our board. It is wonderful to have you, Beth and Diane Q. (oh, I miss her) and other health professionals to give us advice. Wouldn't it be wonderful if a couple of docs would come on our board and lend advice. Don't those guys ever get sick???

Hugs, Joyce PF 1997 Bronchiectasis 2004 > > > > Thank you so much for your words of encouragement. I see my dr next week,> ( > > tried to get in this week but hes booked) and I'm gonna ask him for> something > > stronger for my depression. I'm also still very wheezy and I'm coughing up> > > junk, yeck. The U of MI dr said as long as I wasn't running a fever or> having > > trouble breathing, I should be ok without getting on a antibotic, does> that > > make sense? He said I dont wanna get behind the 8 ball and get sick but if> he > > gives me antibotics and I dont need them yet, then when I do, they wont> work. > > I askedmy husband tonite if he wanted toput me in a hospice center but he > > said absolutely not, I told him I felt like a albatros around his neck,> and my > > dear brother, well, I'm driving him crazy and I love him so much, hes been> > > there for me all the way. But after reading what is going thru, it> was > > like a slap in the face to me, its like wake up girl, she has to face this> with > > his child, so I ask all of you and my Savior above to forgive me of the > > feelings of self pity. Please continute to pray for me, I crave and need> your > > prayers and I always prays for ya'll.... > > > > LOve always, > > > > Vicky81856 IPH/PF PH 4/06 > >>

[Guest guest]

I had to call the doctor on Monday about an infection. I woke up Sunday coughing up blood and feeling icky, I felt a heaviness in the chest and more congestion. He called in a antibiotic on Monday and I started taking it, still coughing up some blood, when the icky feeling is starting to go away.

I went to UN of PA for a transplant evaluation on Monday, and I go back in 3 months for some test. He believes I was misdiagnosed with ipf and I may have a cousin to ipf, he wants my biopsy sample fro 1990 to have the pathologist check it and see if I was misdiagnosed. The cousin to ipf is better than ipf. So he is hopeful that all is good. Now if the cough would go away I would be great. And my sats keep dropping when I walk on 6ltr he said I may need to up it to 8lts. If I get too hot my sats drop without exertion. The good thing I feel it coming on the bad thing, it feels like a fish out of water and I hate that feeling. But I keep on asking Jesus to help me breath and he does. I couldn't take a shower the other day, it came on me as I was getting in, I sat down and rested then asked Jesus to help me get a shower and he did, so now I ask him to help me all day with what ever I do. God is so good, a friend closer than a brother. Just had to give a praise report.

They want me to start walking more, you need to walk at least 600 yards (2 football fields) for a transplant, he asked how far I could walk and it isn't that far, they he asked how far I could walk given the right amount of oxygen now that is a different story, problem is I don't have enough oxygen to walk outside or in stores, I can only carry so much. Wouldn't it be nice to have all the oxygen you needed in a little lightweight carryon(belt type) that could go to 8 or more with enough to last while you were out and about. I have a 12 hrs in the car (course it is 12 hrs on 2) I have to use 4 , so going places is limited for me. But I'm hope full and will try my best before I go back in 3 months.

My prayers are with you all. I know this is a trying time but please call on Jesus to help you, you are not in this alone and he cries for us too, he doesn't want to see any of us hurting.

Take care

Donna in DE

dx unknown 1990

[Guest guest]

Hi Donna, I am sorry to hear you are having these problems. I think I would freak out to cough up blood. I just can't get over the misdiagnosis that DOCTORS make. Ya know we all see several Docs with this disease, how on earth are they wrong for so many years..amazing.

Do you take your O2 in the shower?? It makes a shower enjoyable again. I just throw the hose over the door, have a seat and SMILE..

You are calling on the right one for help. I don't know how non believers can cope. On my own I wouldn't be able to stand the stress. I'm so glad the Comforter has come. God Bless you

Take care of you.

Love and Prayers, Peggy 9/04 ipf

I had to call the doctor on Monday about an infection. I woke up Sunday coughing up blood and feeling icky, I felt a heaviness in the chest and more congestion. He called in a antibiotic on Monday and I started taking it, still coughing up some blood, when the icky feeling is starting to go away.

I went to UN of PA for a transplant evaluation on Monday, and I go back in 3 months for some test. He believes I was misdiagnosed with ipf and I may have a cousin to ipf, he wants my biopsy sample fro 1990 to have the pathologist check it and see if I was misdiagnosed. The cousin to ipf is better than ipf. So he is hopeful that all is good. Now if the cough would go away I would be great. And my sats keep dropping when I walk on 6ltr he said I may need to up it to 8lts. If I get too hot my sats drop without exertion. The good thing I feel it coming on the bad thing, it feels like a fish out of water and I hate that feeling. But I keep on asking Jesus to help me breath and he does. I couldn't take a shower the other day, it came on me as I was getting in, I sat down and rested then asked Jesus to help me get a shower and he did, so now I ask him to help me all day with what ever I do. God is so good, a friend closer than a brother. Just had to ! give a praise report.

They want me to start walking more, you need to walk at least 600 yards (2 football fields) for a transplant, he asked how far I could walk and it isn't that far, they he asked how far I could walk given the right amount of oxygen now that is a different story, problem is I don't have enough oxygen to walk outside or in stores, I can only carry so much. Wouldn't it be nice to have all the oxygen you needed in a little lightweight carryon(belt type) that could go to 8 or more with enough to last while you were out and about. I have a 12 hrs in the car (course it is 12 hrs on 2) I have to use 4 , so going places is limited for me. But I'm hope full and will try my best before I go back in 3 months.

My prayers are with you all. I know this is a trying time but please call on Jesus to help you, you are not in this alone and he cries for us too, he doesn't want to see any of us hurting.

Take care

Donna in DE

dx unknown 1990

[Guest guest]

Dear Joyce:

Its nice to see you are someone who has taken the time to learn about your disease and to learn about how to treat it. Most persons I come across view antibiotics like candy, to just take whenever they feel like it. There are chronic conditions though that require constant antibiotic treatment so individuals need to be on the antibiotics constantly to keep the infections from taking over the body. Bronchiectasis in one of those conditions where it is a fine balancing act to keep infection at bay and it appears that you and your Dr have come up with a good management program for it, based on your medical condition and education about the disease. I wish more people would educate themselves about their diseases so that they can participate in their own care instead of just relying on the doctors to make all the decisions. There are so many different opinions out there from different doctors that one needs to know enough about their disease, treatments for it, medications available, etc. in order to make an informed decision about what is the best avenue in care to follow for them. We only have one life and I for one dont want to leave the important decisions up to one doctor, so like you, I try to learn all I can so I can decide what is best for me. Yes, I do wish we had doctors on this board, though I dont wish this disease on them, but if they have it it would be nice to hear from them. I am no expert on this disease by any stretch of the imagination, but I can learn from what I read and from others on this forum who have had this disease longer than I have. Thanks for all that you share, you benefit this group greatly.

Carolyn

-- Re: Carolyn and Joyce

Carolyn,

Most people with Bronchiectasis are on antibiotics almost continually. Most end up in the hospital several times a year on IV abs. Mucus pools in the bronchia where the walls are stretched and mishapen. The cilia becomes disabled so that mucus is not moved up and out of the airways. I use a percussion vest, nebs and postural drainage just to get the gunk out. At that I cough up great amounts of mucus. As you probably know, lungs filled with this crud develop infection fast. Waiting a day for antibiotics is hazardous. By the time I get to the doc and give sputum samples, etc. the bug has me by the throat. I keep the abs here and I am cautious in using them. I am very aware of the signs.

I agree that misuse of antibiotics is a dangerous thing. But, you got to admit that most of us with this lung disease are in a most dangerous situation. We have limited lung space and pneumonia or infection is our worst enemy. My doctor treats the threat of infection like a threat of nuclear attack. He wants me to be ready, alert and armed as soon as the enemy approaches. He leaves it up to me to be smart enough to know my own body and my own signs. So far, I have been hospitalized only one time for pneumonia. Chronic pseudomona and other bacteria are common to Bronchiectasis, but so far I have not developed any of these. I get minor infections and these take me to my knees. My lung space is so limited that he told me one more big round of pneumonia would kill me. So...what are my options here? This past year I used abs 4 times. Every time I knew my signs, made up my own mind and every time it was justified. Each time I got so sick that had I not started on the abs, I would have ended up in the hospital. For me, quick action works. I am so glad he allows me the option to self treat. He must be doing something right, here I am about six years past my date of expected demise.

You mentioned immunity. Well, because I take immunosuppressants my immune system is not strong enough to fight back. I am fighting too many wars and it is a mess. I know I am not typical. I don't advocate everyone be allowed to self treat with abs, but for me in my condition....it is a must.

Carolyn, you have been such a blessing to our board. It is wonderful to have you, Beth and Diane Q. (oh, I miss her) and other health professionals to give us advice. Wouldn't it be wonderful if a couple of docs would come on our board and lend advice. Don't those guys ever get sick???

Hugs, Joyce PF 1997 Bronchiectasis 2004 > > > > Thank you so much for your words of encouragement. I see my dr next week,> ( > > tried to get in this week but hes booked) and I'm gonna ask him for> something > > stronger for my depression. I'm also still ! very whe ezy and I'm coughing up> > > junk, yeck. The U of MI dr said as long as I wasn't running a fever or> having > > trouble breathing, I should be ok without getting on a antibotic, does> that > > make sense? He said I dont wanna get behind the 8 ball and get sick but if> he > > gives me antibotics and I dont need them yet, then when I do, they wont> work. > > I askedmy husband tonite if he wanted toput me in a hospice center but he > > said absolutely not, I told him I felt like a albatros around his neck,> and my > > dear brother, well, I'm driving him crazy and I love him so much, hes been> > > there for me all the way. But after reading what is going thru, it> was > > like a slap in the face to me, its like wake up girl, she has to face this> with > > his child, so I ask all of you and my Savior above to forgive me of the > > feelings of self pity. Please continute to pray for me, I crave and need> your > > prayers and I always prays for ya'll.... > > > > LOve always, > > > > Vicky81856 IPH/PF PH 4/06 > >>

[Guest guest]

,

I got this tip from a fellow member here. Buy a rolling backpack. It will hold several D tanks. I use it when I go into a mall or someplace like that. If I am just going into a store, etc. for a few minutes, I pull my bag (BOA) out of the backpack and carry it. Get a backpack with inline skate wheels...they are so easy to pull. Just a tip passed on...works for me.

Take care and I hope you feel better.

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

>> I had to call the doctor on Monday about an infection. I woke up Sunday> coughing up blood and feeling icky, I felt a heaviness in the chest and more> congestion. He called in a antibiotic on Monday and I started taking it,> still coughing up some blood, when the icky feeling is starting to go away. > I went to UN of PA for a transplant evaluation on Monday, and I go back in 3> months for some test. He believes I was misdiagnosed with ipf and I may have> a cousin to ipf, he wants my biopsy sample fro 1990 to have the pathologist> check it and see if I was misdiagnosed. The cousin to ipf is better than ipf> So he is hopeful that all is good. Now if the cough would go away I would> be great. And my sats keep dropping when I walk on 6ltr he said I may need> to up it to 8lts. If I get too hot my sats drop without exertion. The good> thing I feel it coming on the bad thing, it feels like a fish out of water> and I hate that feeling. But I keep on asking Jesus to help me breath and he> does. I couldn't take a shower the other day, it came on me as I was getting> in, I sat down and rested then asked Jesus to help me get a shower and he> did, so now I ask him to help me all day with what ever I do. God is so good> a friend closer than a brother. Just had to give a praise report. > They want me to start walking more, you need to walk at least 600 yards (2> football fields) for a transplant, he asked how far I could walk and it isn> t that far, they he asked how far I could walk given the right amount of> oxygen now that is a different story, problem is I don't have enough oxygen> to walk outside or in stores, I can only carry so much. Wouldn't it be nice> to have all the oxygen you needed in a little lightweight carryon(belt type)> that could go to 8 or more with enough to last while you were out and about.> I have a 12 hrs in the car (course it is 12 hrs on 2) I have to use 4 , so> going places is limited for me. But I'm hope full and will try my best> before I go back in 3 months. > My prayers are with you all. I know this is a trying time but please call on> Jesus to help you, you are not in this alone and he cries for us too, he> doesn't want to see any of us hurting. > Take care > > Donna in DE > dx unknown 1990>

[Guest guest]

where in the world did ya get a rolling backpack from? never even

thought of looking for one of those.

i called apria today and asked them to pick up some of my E tanks.

over the last 2 weeks they have set 18 of them out on my patio

without even alerting anyone they are even here. the first 10 were

out there for about 8 days before we ever noticed because we never

go out that door...hence the reason there is a sign on that door

that says UPS and APRIA please use other door. DUH! and about a

week later they dropped another 8 off with the 10 already out there

because i simply do not have any place to store THAT many of those

tanks. i have 15 B tanks and 10 E tanks in my bedroom as it is.....i

told them do not just deliver, i will call when i need them as i

have done in the past.......they think i own a warehouse or what???--

EG 10-05

- In Breathe-Support , " Joyce " wrote:

>

>

> ,

>

> I got this tip from a fellow member here. Buy a rolling

backpack. It

> will hold several D tanks. I use it when I go into a mall or

someplace

> like that. If I am just going into a store, etc. for a few

minutes, I

> pull my bag (BOA) out of the backpack and carry it. Get a

backpack with

> inline skate wheels...they are so easy to pull. Just a tip passed

> on...works for me.

>

> Take care and I hope you feel better.

>

> Hugs, Joyce PF 1997 Bronchiectasis 2004

> INDIANA

>

>

>

> >

> > I had to call the doctor on Monday about an infection. I woke up

> Sunday

> > coughing up blood and feeling icky, I felt a heaviness in the

chest

> and more

> > congestion. He called in a antibiotic on Monday and I started

taking

> it,

> > still coughing up some blood, when the icky feeling is starting

to go

> away.

> > I went to UN of PA for a transplant evaluation on Monday, and I

go

> back in 3

> > months for some test. He believes I was misdiagnosed with ipf

and I

> may have

> > a cousin to ipf, he wants my biopsy sample fro 1990 to have the

> pathologist

> > check it and see if I was misdiagnosed. The cousin to ipf is

better

> than ipf

> > So he is hopeful that all is good. Now if the cough would go

away I

> would

> > be great. And my sats keep dropping when I walk on 6ltr he said

I may

> need

> > to up it to 8lts. If I get too hot my sats drop without

exertion. The

> good

> > thing I feel it coming on the bad thing, it feels like a fish

out of

> water

> > and I hate that feeling. But I keep on asking Jesus to help me

breath

> and he

> > does. I couldn't take a shower the other day, it came on me as I

was

> getting

> > in, I sat down and rested then asked Jesus to help me get a

shower and

> he

> > did, so now I ask him to help me all day with what ever I do.

God is

> so good

> > a friend closer than a brother. Just had to give a praise report.

> > They want me to start walking more, you need to walk at least 600

> yards (2

> > football fields) for a transplant, he asked how far I could walk

and

> it isn

> > t that far, they he asked how far I could walk given the right

amount

> of

> > oxygen now that is a different story, problem is I don't have

enough

> oxygen

> > to walk outside or in stores, I can only carry so much. Wouldn't

it be

> nice

> > to have all the oxygen you needed in a little lightweight carryon

(belt

> type)

> > that could go to 8 or more with enough to last while you were

out and

> about.

> > I have a 12 hrs in the car (course it is 12 hrs on 2) I have to

use 4

> , so

> > going places is limited for me. But I'm hope full and will try

my best

> > before I go back in 3 months.

> > My prayers are with you all. I know this is a trying time but

please

> call on

> > Jesus to help you, you are not in this alone and he cries for us

too,

> he

> > doesn't want to see any of us hurting.

> > Take care

> >

> > Donna in DE

> > dx unknown 1990

> >

>

[Guest guest]

Oops! I said D tanks in the rolling backpack. I have M6 or B tanks.

Those backpacks are everywhere .... Walmart, Target, etc....usually in the school supplies section... LLBean has them....I paid 14.99 (at a discount store)for mine and have used it for months. I want one from Bean.

Joyce PF 1997 Bronchiectasis 2004 Indiana

> > >> > > I had to call the doctor on Monday about an infection. I woke up> > Sunday> > > coughing up blood and feeling icky, I felt a heaviness in the > chest> > and more> > > congestion. He called in a antibiotic on Monday and I started > taking> > it,> > > still coughing up some blood, when the icky feeling is starting > to go> > away.> > > I went to UN of PA for a transplant evaluation on Monday, and I > go> > back in 3> > > months for some test. He believes I was misdiagnosed with ipf > and I> > may have> > > a cousin to ipf, he wants my biopsy sample fro 1990 to have the> > pathologist> > > check it and see if I was misdiagnosed. The cousin to ipf is > better> > than ipf> > > So he is hopeful that all is good. Now if the cough would go > away I> > would> > > be great. And my sats keep dropping when I walk on 6ltr he said > I may> > need> > > to up it to 8lts. If I get too hot my sats drop without > exertion. The> > good> > > thing I feel it coming on the bad thing, it feels like a fish > out of> > water> > > and I hate that feeling. But I keep on asking Jesus to help me > breath> > and he> > > does. I couldn't take a shower the other day, it came on me as I > was> > getting> > > in, I sat down and rested then asked Jesus to help me get a > shower and> > he> > > did, so now I ask him to help me all day with what ever I do. > God is> > so good> > > a friend closer than a brother. Just had to give a praise report.> > > They want me to start walking more, you need to walk at least 600> > yards (2> > > football fields) for a transplant, he asked how far I could walk > and> > it isn> > > t that far, they he asked how far I could walk given the right > amount> > of> > > oxygen now that is a different story, problem is I don't have > enough> > oxygen> > > to walk outside or in stores, I can only carry so much. Wouldn't > it be> > nice> > > to have all the oxygen you needed in a little lightweight carryon> (belt> > type)> > > that could go to 8 or more with enough to last while you were > out and> > about.> > > I have a 12 hrs in the car (course it is 12 hrs on 2) I have to > use 4> > , so> > > going places is limited for me. But I'm hope full and will try > my best> > > before I go back in 3 months.> > > My prayers are with you all. I know this is a trying time but > please> > call on> > > Jesus to help you, you are not in this alone and he cries for us > too,> > he> > > doesn't want to see any of us hurting.> > > Take care> > >> > > Donna in DE> > > dx unknown 1990> > >> >>

[Guest guest]

rolling back pack--i got mine at Staples or Office Max

> > >

> > > I had to call the doctor on Monday about an infection. I woke up

> > Sunday

> > > coughing up blood and feeling icky, I felt a heaviness in the

> chest

> > and more

> > > congestion. He called in a antibiotic on Monday and I started

> taking

> > it,

> > > still coughing up some blood, when the icky feeling is starting

> to go

> > away.

> > > I went to UN of PA for a transplant evaluation on Monday, and I

> go

> > back in 3

> > > months for some test. He believes I was misdiagnosed with ipf

> and I

> > may have

> > > a cousin to ipf, he wants my biopsy sample fro 1990 to have the

> > pathologist

> > > check it and see if I was misdiagnosed. The cousin to ipf is

> better

> > than ipf

> > > So he is hopeful that all is good. Now if the cough would go

> away I

> > would

> > > be great. And my sats keep dropping when I walk on 6ltr he said

> I may

> > need

> > > to up it to 8lts. If I get too hot my sats drop without

> exertion. The

> > good

> > > thing I feel it coming on the bad thing, it feels like a fish

> out of

> > water

> > > and I hate that feeling. But I keep on asking Jesus to help me

> breath

> > and he

> > > does. I couldn't take a shower the other day, it came on me as

I

> was

> > getting

> > > in, I sat down and rested then asked Jesus to help me get a

> shower and

> > he

> > > did, so now I ask him to help me all day with what ever I do.

> God is

> > so good

> > > a friend closer than a brother. Just had to give a praise

report.

> > > They want me to start walking more, you need to walk at least

600

> > yards (2

> > > football fields) for a transplant, he asked how far I could

walk

> and

> > it isn

> > > t that far, they he asked how far I could walk given the right

> amount

> > of

> > > oxygen now that is a different story, problem is I don't have

> enough

> > oxygen

> > > to walk outside or in stores, I can only carry so much.

Wouldn't

> it be

> > nice

> > > to have all the oxygen you needed in a little lightweight

carryon

> (belt

> > type)

> > > that could go to 8 or more with enough to last while you were

> out and

> > about.

> > > I have a 12 hrs in the car (course it is 12 hrs on 2) I have to

> use 4

> > , so

> > > going places is limited for me. But I'm hope full and will try

> my best

> > > before I go back in 3 months.

> > > My prayers are with you all. I know this is a trying time but

> please

> > call on

> > > Jesus to help you, you are not in this alone and he cries for

us

> too,

> > he

> > > doesn't want to see any of us hurting.

> > > Take care

> > >

> > > Donna in DE

> > > dx unknown 1990

> > >

> >

>

[Guest guest]

Donna-I see you live in Delaware and go to HUP. I live in

Pennsylvania and go to HUP. My pulmonary doc there is Kreider,

previously it was Pinak Acharya. The transplant doc that I see is

Dr. Ahya.

Pulmonary rehab is at St. 's in Langhorne. I know two people

there who had lung transplants at HUP. One of them did so well that

HUP discharged her early and she is back at St. 's rehab. She

wears a mask and gloves while there--to prevent infection. She is

doing very well. I don't think she had IPF, maybe it was COPD. the

other person had IPF with pulmonary hypertension. He was on the list

for 19 hours. I saw him a couple of weeks after his transplant and

at that time he was very happy with it. That was the last time that

i saw him, so i don't know how he is doing now.

Sorry to hear about your illness, but nice to know another person

with it who sort of lives nearby.

Joyce ipf 3/06

>

> I had to call the doctor on Monday about an infection. I woke up

Sunday

> coughing up blood and feeling icky, I felt a heaviness in the chest

and more

> congestion. He called in a antibiotic on Monday and I started

taking it,

> still coughing up some blood, when the icky feeling is starting to

go away.

> I went to UN of PA for a transplant evaluation on Monday, and I go

back in 3

> months for some test. He believes I was misdiagnosed with ipf and I

may have

> a cousin to ipf, he wants my biopsy sample fro 1990 to have the

pathologist

> check it and see if I was misdiagnosed. The cousin to ipf is better

than ipf

> So he is hopeful that all is good. Now if the cough would go away

I would

> be great. And my sats keep dropping when I walk on 6ltr he said I

may need

> to up it to 8lts. If I get too hot my sats drop without exertion.

The good

> thing I feel it coming on the bad thing, it feels like a fish out

of water

> and I hate that feeling. But I keep on asking Jesus to help me

breath and he

> does. I couldn't take a shower the other day, it came on me as I

was getting

> in, I sat down and rested then asked Jesus to help me get a shower

and he

> did, so now I ask him to help me all day with what ever I do. God

is so good

> a friend closer than a brother. Just had to give a praise report.

> They want me to start walking more, you need to walk at least 600

yards (2

> football fields) for a transplant, he asked how far I could walk

and it isn

> t that far, they he asked how far I could walk given the right

amount of

> oxygen now that is a different story, problem is I don't have

enough oxygen

> to walk outside or in stores, I can only carry so much. Wouldn't it

be nice

> to have all the oxygen you needed in a little lightweight carryon

(belt type)

> that could go to 8 or more with enough to last while you were out

and about.

> I have a 12 hrs in the car (course it is 12 hrs on 2) I have to use

4 , so

> going places is limited for me. But I'm hope full and will try my

best

> before I go back in 3 months.

> My prayers are with you all. I know this is a trying time but

please call on

> Jesus to help you, you are not in this alone and he cries for us

too, he

> doesn't want to see any of us hurting.

> Take care

>

> Donna in DE

> dx unknown 1990

>

[Guest guest]

Hi Peggy,

Thanks for your concern. I use 6 lf when showering and or moving about. The doctors at Un of PA doesn't think that is enough since I continue to drop when I'm on 6 lf. He said I may need 8 or more and to watch my sats since I have a pulse oximeter. For some reason I get warm and then I'm like a fish out of water and my sats drop, from high 90's to 70's, it has dropped into the 60's at times. When I was diagnosed in 1990 it was all pretty new to them. I think at that time they were still grouping all pf into one category. And they how know that isn't true. So I'm hope full, I'm in the master's hands. I trust in him to take care of me. I'm feeling better well at least no blood today so the antibiotic is working and that's a good thing. I'm glad this doctor wants to see what it is, but he also said when you get to a certain point it doesn't matter what the diagnosis is, because you are really sick. And the dx doesn't change that. The cousin to ipf has more longevity and that is a good thing since I have had this since 1990 and they believe it started with that pneumonia in 1982. So we are into 24 years now.

Donna in De

Dx unknown now 1990

[Guest guest]

Wow Donna 24 years, that gives me hope. I had a lung biopsy and it showed I have Desquamative Interstitial Pneumonitis, which has more longevity than IPF, since it is the cousin to it. The statistics on it show that 70% are still alive after 10 years past diagnosis. I wonder if that is what you have as well. They say it is 99.9% caused by smoking but I am a non-smoker and wasnt around Passive smoking either so I fit into the rare category of one to get it that didnt smoke. This was one of the main reasons I had the biopsy, to get an idea how much time I had, the other was to make sure there wasnt something else going on in my lungs that wasnt diagnosed and that might need treating.

Knowing I had the type that has a greater longevity was encouraging to me since they feel I am about halfway into the disease process already. Before the biopsy I was thinking I had only 2-5 years and maybe even only half of that, due to being halfway though the disease process, which was very discouraging to me. I didnt even know anything was wrong till this past July and boy what a shocker to find out. I know I shouldnt get hung up on statistics, as there are always exceptions, but really statistics are taken from a compilation of actual cases, so they do give somewhat of an idea of what the average is on life expectancy. Hearing that you have had this 24 years encourages me to think I might be around to see my grandchildren grow up and to have a decent amount of life with my hubby of 7 years. Here's hoping you have at least 24 more years to go and me too. LOL

Carolyn

-- Re: Carolyn and Joyce

Hi Peggy,

Thanks for your concern. I use 6 lf when showering and or moving about. The doctors at Un of PA doesn't think that is enough since I continue to drop when I'm on 6 lf. He said I may need 8 or more and to watch my sats since I have a pulse oximeter. For some reason I get warm and then I'm like a fish out of water and my sats drop, from high 90's to 70's, it has dropped into the 60's at times. When I was diagnosed in 1990 it was all pretty new to them. I think at that time they were still grouping all pf into one category. And they how know that isn't true. So I'm hope full, I'm in the master's hands. I trust in him to take care of me. I'm feeling better well at least no blood today so the antibiotic is working and that's a good thing. I'm glad this doctor wants to see what it is, but he also said when you get to a certain point it doesn't matter what the diagnosis is, because you are really sick. And the dx doesn't change that. The cousin to ipf has more longevity and that is a good thing since I have had this since 1990 and they believe it started with that pneumonia in 1982. So we are into 24 years now.

Donna in De

Dx unknown now 1990