Re: I'm back with some more question...

[Guest guest]

>

> Okay, I admit that I can only 'take' so much info at a time and

then

> I have to take a break. I have some questions though that I'd like

> to ask the group. I may only be able to read a few answers at a

time

> so I appreciate the responses.

>

> (1)I read that there is a direct correlation between an early

> diagnosis and life expectancy. The doctor said they caught mine

very

> early, but if we have to go through the 3 week wait to get the

second

> diagnosis, then if I do the biopsy there will be more drag time and

> if I go to Duke for another opinion (which I would like to do) even

> more drag time. If it is time critical, am I wasting valuable time?

>

> (2)This one is probably addressed more to the women. Do you use

some

> sort of mask when you spray your hair, etc. Can you still wear

> perfume if it doesn't bother you? There is always the Pam spray,

the

> Baker's joy, etc... am I being silly or is there something you do?

>

> (3)I asked this yesterday, but somehow my post disappeared or I

> couldn't find it. Do you continue to go out and about? I am so

> afraid of getting a virus, do you do anything different? Do you

> continue to travel? Even abroad? What if a family member gets a

> virus, how do you handle it?

>

> (4)Is there another country that is more advanced with this

disease?

> I read somewhere that there is NO medicine that is FDA approved for

> use with PF. Is there is other countries? Does the medicine really

> prolong life as it has what sounds like body destroying side

> effects? Also, I am very distrought that the medical community

would use age discrimination in both procuring organs and in

dispensing them. Basically they are sayingi my life isn't valuable

to them and that really angers me. Are other countries more

enlightened?

(5) I am scheduled later this week for a mammogram. Since the doctor

asked me if I had been exposed to radiation, I am wondering if I am

continue having them. Anyone know?

>

> Thanks,

>

> Ann,IPF 01-08,65 NC

>

> (4)

>

[Guest guest]

Ann, I am not sure I have welcomed you or not so Welcome. Bless your heart. I can feel the fear your having. GO OUT>> GET OUT>>ENJOY your life. You do still have a lot of living to do. If your on 02 just be sure you have enough to last. I am 65 and I get out and go to Church every Sunday.. If I hear or see anyone cough or sneeze. I move out of their space. Or they move when I come in. My People that sit around me are very protective too. I go to Wall mart, Sams club, Bells. Where-ever I want. I mostly use the scooter carts but I get brave once in a while and hoof it. LOL  Heavens your lungs are sick but YOU still have to live.I keep a little bottle of hand cleaner in my purse and use it.  everyone of us have ask the same thing, scared to leave out homes. I haven't had a cold yet since Dx = diagnosis.When I go to my primary or any other Dr. I ask to be put into a room immediately. too many sickos in dr's offices.As for a time line- it is not as important as it seems. There is nothing for IPF. however some forms of fibrosis can be helped or slowed down. As far as showering, dressing. keep your 02 on in the shower. get a shower chair. you may need to talk to your Dr about turning up your 02 a bit. Smells bother some. I use pump hair spray, carefully most of the time. Remember you handle this disease, don't let it handle you.Just post any questions or comments. We are all in this fight together.Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Okay, I admit that I can only 'take' so much info at a time and then I have to take a break. I have some questions though that I'd like to ask the group. I may only be able to read a few answers at a time so I appreciate the responses.(1)I read that there is a direct correlation between an early diagnosis and life expectancy. The doctor said they caught mine very early, but if we have to go through the 3 week wait to get the second diagnosis, then if I do the biopsy there will be more drag time and if I go to Duke for another opinion (which I would like to do) even more drag time. If it is time critical, am I wasting valuable time?(2)This one is probably addressed more to the women. Do you use some sort of mask when you spray your hair, etc. Can you still wear perfume if it doesn't bother you? There is always the Pam spray, the Baker's joy, etc... am I being silly or is there something you do?(3)I asked this yesterday, but somehow my post disappeared or I couldn't find it. Do you continue to go out and about? I am so afraid of getting a virus, do you do anything different? Do you continue to travel? Even abroad? What if a family member gets a virus, how do you handle it?(4)Is there another country that is more advanced with this disease? I read somewhere that there is NO medicine that is FDA approved for use with PF. Is there is other countries? Does the medicine really prolong life as it has what sounds like body destroying side effects? Also, I am very distrought that the medical community would use age discrimination in both procuring organs and in dispensing them. Basically they are sayingi my life isn't valuable to them and that really angers me. Are other countries more enlightened?Thanks,Ann,IPF 01-08,65 NC (4) 

[Guest guest]

1-Somewhat depends on what form of PF you have. If you have a form

which responds positively to prednisone, then, yes, the sooner you

start the better. However, a month or so isn't going to be critical.

It's probably more significant in a case like mine where the disease

should have been diagosed 12-18 months earlier. Ultimately the

standard treatment which helps some and not others is Imuran and

Prednisone. So, educating yourself in advance about those is

worthwhile.

2-You're not silly at all. If perfumes don't bother you, then fine.

However, the time will likely come where you become more sensitive.

As to sprays, those should be a concern for anyone to not inhale,

whether hair spray or anything else. So whether a mask or

positioning, you need to not be inhaling anything potentially bad.

But, air pollutants, cigarette smoke, those type things are going to

be the more difficult ones to avoid.

3-Yes, I do different but in moderation. I don't avoid getting out.

However, I do not spend time around sick people, even family or

friends. They all know that. I even stay away from the waiting area

when visiting my primary physician. But I still go out in public and

do anything I want. Now, one issue I face soon is a concert. Afraid

it might be the peak of flu season. Even if its not I may take a mask

just in case someone near is sick. Sanitary wipes and washing hands

obsessively are important. So don't avoid life in fear of germs, just

don't knowingly subject yourself to them.

4-No other countries are more advanced in transplants. However, in

Europe they do tend to use organs that they would not here. Much like

we talked about San , in most of Europe they will use an organ

that is age comparable to the one receiving it. As to consideration

of age in deciding who to give a transplant to, the shortage of

organs forces those kinds of decisions. Its very unfortunate.

However, if it were me waiting at 65 or so and there was a 35 year

old with two kids, I can't argue with her getting the lung. Also

different transplant centers do serve a different demographic. For

instance, Shands, in Florida, does on average older persons than the

typical, because of their location.

>

> Okay, I admit that I can only 'take' so much info at a time and

then

> I have to take a break. I have some questions though that I'd like

> to ask the group. I may only be able to read a few answers at a

time

> so I appreciate the responses.

>

> (1)I read that there is a direct correlation between an early

> diagnosis and life expectancy. The doctor said they caught mine

very

> early, but if we have to go through the 3 week wait to get the

second

> diagnosis, then if I do the biopsy there will be more drag time and

> if I go to Duke for another opinion (which I would like to do) even

> more drag time. If it is time critical, am I wasting valuable time?

>

> (2)This one is probably addressed more to the women. Do you use

some

> sort of mask when you spray your hair, etc. Can you still wear

> perfume if it doesn't bother you? There is always the Pam spray,

the

> Baker's joy, etc... am I being silly or is there something you do?

>

> (3)I asked this yesterday, but somehow my post disappeared or I

> couldn't find it. Do you continue to go out and about? I am so

> afraid of getting a virus, do you do anything different? Do you

> continue to travel? Even abroad? What if a family member gets a

> virus, how do you handle it?

>

> (4)Is there another country that is more advanced with this

disease?

> I read somewhere that there is NO medicine that is FDA approved for

> use with PF. Is there is other countries? Does the medicine really

> prolong life as it has what sounds like body destroying side

> effects? Also, I am very distrought that the medical community

would

> use age discrimination in both procuring organs and in dispensing

> them. Basically they are sayingi my life isn't valuable to them

and

> that really angers me. Are other countries more enlightened?

>

> Thanks,

>

> Ann,IPF 01-08,65 NC

>

> (4)

>

[Guest guest]

5. Oh, thats an ironic turn that the same doctors who ask about how

much radiation are going to test you and x-ray you and CT you

repeatedly. Things like a mammogram or a colonoscopy still carry the

same importance and generally one proceeds as they would have before.

> >

> > Okay, I admit that I can only 'take' so much info at a time and

> then

> > I have to take a break. I have some questions though that I'd

like

> > to ask the group. I may only be able to read a few answers at a

> time

> > so I appreciate the responses.

> >

> > (1)I read that there is a direct correlation between an early

> > diagnosis and life expectancy. The doctor said they caught mine

> very

> > early, but if we have to go through the 3 week wait to get the

> second

> > diagnosis, then if I do the biopsy there will be more drag time

and

> > if I go to Duke for another opinion (which I would like to do)

even

> > more drag time. If it is time critical, am I wasting valuable

time?

> >

> > (2)This one is probably addressed more to the women. Do you use

> some

> > sort of mask when you spray your hair, etc. Can you still wear

> > perfume if it doesn't bother you? There is always the Pam spray,

> the

> > Baker's joy, etc... am I being silly or is there something you do?

> >

> > (3)I asked this yesterday, but somehow my post disappeared or I

> > couldn't find it. Do you continue to go out and about? I am so

> > afraid of getting a virus, do you do anything different? Do you

> > continue to travel? Even abroad? What if a family member gets a

> > virus, how do you handle it?

> >

> > (4)Is there another country that is more advanced with this

> disease?

> > I read somewhere that there is NO medicine that is FDA approved

for

> > use with PF. Is there is other countries? Does the medicine

really

> > prolong life as it has what sounds like body destroying side

> > effects? Also, I am very distrought that the medical community

> would use age discrimination in both procuring organs and in

> dispensing them. Basically they are sayingi my life isn't valuable

> to them and that really angers me. Are other countries more

> enlightened?

>

> (5) I am scheduled later this week for a mammogram. Since the

doctor

> asked me if I had been exposed to radiation, I am wondering if I am

> continue having them. Anyone know?

> >

> > Thanks,

> >

> > Ann,IPF 01-08,65 NC

> >

> > (4)

> >

>

[Guest guest]

Ann,

Don't feel bad about having a limit on how much information you can take in right now. That's normal and healthy. Your mind (like most of ours) can only process so much and then needs a break. I remember when I was first diagnosed and was doing research, I'd have to shut the computer off and walk away. It made me angry! This diagnosis just infuriated me and I could only handle small amounts of information at a time.

As for your questions...here's my 2 cents and that's probably about what it's worth.

I think there is probably direct correlation between early diagnosis and longer life expectancy but I don't think you're wasting time in getting more information. As a matter of fact I'd spend as much time as I need gathering all the information possible about my diagnosis. I was initially diagnosed with IPF which has no treatment but upon biopsy it was found that I actually have a different form of fibrosis called NSIP (non-specific interstitial pneumonitis). There is a substantial difference in life expectancy, the course of the disease and at least some possible treatment options. I was on high doses (up to 100mg) of prednisone for between June of 06 and February of 07. I did have side effects though they were in no way "body destroying". With the help of my doctor I was able to manage them pretty easily. I firmly believe the prednisone saved my life initially and stablized my illness. I've remained stable ever since

and I'm grateful every day. Other folks have had much worse experiences with prednisone and would not take it again. Everyone is different.

I go out and do just about anything I want. I try to avoid sick people including family. My two nieces were sick with colds last week and I steered very clear of them. I've been sick twice since my diagnosis, once with bronchitis which was scary and once with a simple head cold. Just take care of yourself first!

Perfume doesn't bother me at least not yet. I use Pam in the kitchen and hairspray in the bathroom. The time may come when I need to change that but so far things like that don't bother me.

The medical community is very conservative in general regarding organ procurement and dispensing. That is starting to change as the survival rates get better but it's slow. Lung transplantation is different from and more difficult than even heart transplatation and survival times are shorter. Until they improve that expect the conservatism to continue. They will only transplant the best organs into the folks most likely to survive in an effort to improve survival and learn more.

There is hope for treatment and research is ongoing. There are clinical trials in progress and I'm hopeful. In the meantime I just try to take the best care of myself and keep my spirits up!!

Beth in NC age 48 Fibrotic NSIP 06/06

"For as long as I shall live, I will testify to Love."

I'm back with some more question...

Okay, I admit that I can only 'take' so much info at a time and then I have to take a break. I have some questions though that I'd like to ask the group. I may only be able to read a few answers at a time so I appreciate the responses.(1)I read that there is a direct correlation between an early diagnosis and life expectancy. The doctor said they caught mine very early, but if we have to go through the 3 week wait to get the second diagnosis, then if I do the biopsy there will be more drag time and if I go to Duke for another opinion (which I would like to do) even more drag time. If it is time critical, am I wasting valuable time?(2)This one is probably addressed more to the women. Do you use some sort of mask when you spray your hair, etc. Can you still wear perfume if it doesn't bother you? There is always the Pam spray, the Baker's joy, etc... am I being silly or is there something you

do?(3)I asked this yesterday, but somehow my post disappeared or I couldn't find it. Do you continue to go out and about? I am so afraid of getting a virus, do you do anything different? Do you continue to travel? Even abroad? What if a family member gets a virus, how do you handle it?(4)Is there another country that is more advanced with this disease? I read somewhere that there is NO medicine that is FDA approved for use with PF. Is there is other countries? Does the medicine really prolong life as it has what sounds like body destroying side effects? Also, I am very distrought that the medical community would use age discrimination in both procuring organs and in dispensing them. Basically they are sayingi my life isn't valuable to them and that really angers me. Are other countries more enlightened?Thanks,Ann,IPF 01-08,65 NC (4)

[Guest guest]

Since I have scarring in both lungs does that reduce my prognosis?

>

> Okay, I admit that I can only 'take' so much info at a time and

then

> I have to take a break. I have some questions though that I'd like

> to ask the group. I may only be able to read a few answers at a

time

> so I appreciate the responses.

>

> (1)I read that there is a direct correlation between an early

> diagnosis and life expectancy. The doctor said they caught mine

very

> early, but if we have to go through the 3 week wait to get the

second

> diagnosis, then if I do the biopsy there will be more drag time and

> if I go to Duke for another opinion (which I would like to do) even

> more drag time. If it is time critical, am I wasting valuable time?

>

> (2)This one is probably addressed more to the women. Do you use

some

> sort of mask when you spray your hair, etc. Can you still wear

> perfume if it doesn't bother you? There is always the Pam spray,

the

> Baker's joy, etc... am I being silly or is there something you do?

>

> (3)I asked this yesterday, but somehow my post disappeared or I

> couldn't find it. Do you continue to go out and about? I am so

> afraid of getting a virus, do you do anything different? Do you

> continue to travel? Even abroad? What if a family member gets a

> virus, how do you handle it?

>

> (4)Is there another country that is more advanced with this

disease?

> I read somewhere that there is NO medicine that is FDA approved for

> use with PF. Is there is other countries? Does the medicine really

> prolong life as it has what sounds like body destroying side

> effects? Also, I am very distrought that the medical community

would

> use age discrimination in both procuring organs and in dispensing

> them. Basically they are sayingi my life isn't valuable to them

and

> that really angers me. Are other countries more enlightened?

>

> Thanks,

>

> Ann,IPF 01-08,65 NC

>

> (4)

>

[Guest guest]

No it is just in both lungs. I think it is always in both. I know mine is in both. I ask how they could put a new healthy lung in and leave the scared one and at that point it does not spread to the new lung.. That just is amazing to me. Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Since I have scarring in both lungs does that reduce my prognosis?>> Okay, I admit that I can only 'take' so much info at a time and then > I have to take a break. I have some questions though that I'd like > to ask the group. I may only be able to read a few answers at a time > so I appreciate the responses.> > (1)I read that there is a direct correlation between an early > diagnosis and life expectancy. The doctor said they caught mine very > early, but if we have to go through the 3 week wait to get the second > diagnosis, then if I do the biopsy there will be more drag time and > if I go to Duke for another opinion (which I would like to do) even > more drag time. If it is time critical, am I wasting valuable time?> > (2)This one is probably addressed more to the women. Do you use some > sort of mask when you spray your hair, etc. Can you still wear > perfume if it doesn't bother you? There is always the Pam spray, the > Baker's joy, etc... am I being silly or is there something you do?> > (3)I asked this yesterday, but somehow my post disappeared or I > couldn't find it. Do you continue to go out and about? I am so > afraid of getting a virus, do you do anything different? Do you > continue to travel? Even abroad? What if a family member gets a > virus, how do you handle it?> > (4)Is there another country that is more advanced with this disease? > I read somewhere that there is NO medicine that is FDA approved for > use with PF. Is there is other countries? Does the medicine really > prolong life as it has what sounds like body destroying side > effects? Also, I am very distrought that the medical community would > use age discrimination in both procuring organs and in dispensing > them. Basically they are sayingi my life isn't valuable to them and > that really angers me. Are other countries more enlightened?> > Thanks,> > Ann,IPF 01-08,65 NC > > (4)>

[Guest guest]

Its normal to have scarring in both lungs. One may be worse than the

other. Mine were pretty much equal in scarring and condition, except

now after the VATS I do have more issues with the one on which the

biopsy was performed. But one would fully expect and base any

prognsis on scarring in both lungs.

> >

> > Okay, I admit that I can only 'take' so much info at a time and

> then

> > I have to take a break. I have some questions though that I'd

like

> > to ask the group. I may only be able to read a few answers at a

> time

> > so I appreciate the responses.

> >

> > (1)I read that there is a direct correlation between an early

> > diagnosis and life expectancy. The doctor said they caught mine

> very

> > early, but if we have to go through the 3 week wait to get the

> second

> > diagnosis, then if I do the biopsy there will be more drag time

and

> > if I go to Duke for another opinion (which I would like to do)

even

> > more drag time. If it is time critical, am I wasting valuable

time?

> >

> > (2)This one is probably addressed more to the women. Do you use

> some

> > sort of mask when you spray your hair, etc. Can you still wear

> > perfume if it doesn't bother you? There is always the Pam spray,

> the

> > Baker's joy, etc... am I being silly or is there something you do?

> >

> > (3)I asked this yesterday, but somehow my post disappeared or I

> > couldn't find it. Do you continue to go out and about? I am so

> > afraid of getting a virus, do you do anything different? Do you

> > continue to travel? Even abroad? What if a family member gets a

> > virus, how do you handle it?

> >

> > (4)Is there another country that is more advanced with this

> disease?

> > I read somewhere that there is NO medicine that is FDA approved

for

> > use with PF. Is there is other countries? Does the medicine

really

> > prolong life as it has what sounds like body destroying side

> > effects? Also, I am very distrought that the medical community

> would

> > use age discrimination in both procuring organs and in dispensing

> > them. Basically they are sayingi my life isn't valuable to them

> and

> > that really angers me. Are other countries more enlightened?

> >

> > Thanks,

> >

> > Ann,IPF 01-08,65 NC

> >

> > (4)

> >

>

[Guest guest]

Ann... a quick reply before I sign off for tonight.

I was dx early too and have remained fairly stable. Since there is no treatment or cure for IPF I don't think it makes any difference in early Dx and life expectancy. Perhaps there is more time to generally strengthen our bodies but nothing "to catch it early".

I don't think you are "wasting time"...what else can you do but what you are doing? Information is the best thing we can do at any stage. At least we know what to expect and we can pass our knowledge on to others. When I first came on the board I had a ka-zillion questions just like you do now.

I don't use hair spray and I wear perfume but cover my face with one of my hands when I do.

None of your questions are silly Ann. We've never been here before and sometimes it's the little things that flit through our minds in the middle of the night.

I personally don't go out much. Chalk it up to my age (70 this year) and I tend to be reclusive anyway. I like being home. I always have tissues with me and if I'm near a person coughing I immediately cover my face and I've even handed one to the person coughing/sneezing. lol. We travel some and I carry bleach wipes and wipe stuff down (like at a Motel). I wash my hands from a little bottle of waterless hand cleaner always in my purse...stuff like this. When my family has colds or virus they don't come over and/or we don't go to their home during that time.

Keep on keepin' on girl.

Oh. what a sweet moment you and your husband shared. It is so hard on our partners. Sometimes Rich and I have "those talks" but the majority of the time my disease isn't even mentioned.

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

I'm back with some more question...

Okay, I admit that I can only 'take' so much info at a time and then I have to take a break. I have some questions though that I'd like to ask the group. I may only be able to read a few answers at a time so I appreciate the responses.(1)I read that there is a direct correlation between an early diagnosis and life expectancy. The doctor said they caught mine very early, but if we have to go through the 3 week wait to get the second diagnosis, then if I do the biopsy there will be more drag time and if I go to Duke for another opinion (which I would like to do) even more drag time. If it is time critical, am I wasting valuable time?(2)This one is probably addressed more to the women. Do you use some sort of mask when you spray your hair, etc. Can you still wear perfume if it doesn't bother you? There is always the Pam spray, the Baker's joy, etc... am I being silly or is there something you do?(3)I asked this yesterday, but somehow my post disappeared or I couldn't find it. Do you continue to go out and about? I am so afraid of getting a virus, do you do anything different? Do you continue to travel? Even abroad? What if a family member gets a virus, how do you handle it?(4)Is there another country that is more advanced with this disease? I read somewhere that there is NO medicine that is FDA approved for use with PF. Is there is other countries? Does the medicine really prolong life as it has what sounds like body destroying side effects? Also, I am very distrought that the medical community would use age discrimination in both procuring organs and in dispensing them. Basically they are sayingi my life isn't valuable to them and that really angers me. Are other countries more enlightened?Thanks,Ann,IPF 01-08,65 NC (4)