Hi All

[Guest guest]

Peggy,

No need to worry, but thanks for your concern, sweet

friend. I've just been involved in too many things at once,

and sometimes it just takes more time than I've got to

stay current with the board. My dad is out of town & I've

been trying to be there more for my mom while he's away.

Yesterday I spent the day in bed without a drop of energy,

but am feeling stronger today. Hope your eye is doing better.

My sincere sympathy goes out to the wife and family of

Heidler, a valued member of this forum.

,

The negligence on the part of that doc is staggering!!

and Jim,

I'm truly sorry about the loss of your friends. My friends

are deeply cherished treasures, so I feel your loss.

Jim, I'm on CellCept, a powerful immunosuppresant. I

am a pre-transplant patient, and it's used as an anti-

rejection drug later. But I believe I'm getting it now

because of the presence of antibodies that I have that

they're hoping to reduce in number. I've been on it

for nearly two years and haven't had any side effects.

Jon and Teri,

That's great news about Jaydn. I know you're relieved!!

Jim Moye,

I'm sorry for your IPF diagnosis, but glad you found such

a genuinely caring group as this. Welcome, fellow Texan.

Which Jim is Jimbo?

Zena,

We're here for you, although I'm sorry you have the

need for a support group such as this. This is a safe place

to vent, laugh, cry, learn, and inform, among very caring

individuals. Please keep us posted on your status.

,

I'm thinking of you and wondering if you've had the procedure.

Prayers are going up for you, dear lady.

Vicky,

I'm glad to see your post and delighted with your test results!!!

Joyce,

I'm sorry about your bubble head fiasco. Not funny, I'm

sure. Glad we don't have to write to you in the slammer!

I haven't been around much lately, and I think I

failed to respond to you about masks and my

glasses. Well, I've never used a mask of any kind.

Supposedly, my glasses are good up to 5L, but they're

all I use except when I'm hooked up directly to my

reservoirs. My sats indicate that I'm getting what I

need - not that mine don't fall often and hard, but

I'm convinced they would anyway whenever I move

around.

,

You ARE pretty! Thank you SO much for the lovely

travel photos. They are breathtaking!

Lou,

I love leftovers. We had nice paper plates at

Thanksgiving and it was great to have the extra time

to spend together instead of cleaning up! Enjoy!!

Sher,

Congratulations on the new great-grand babe. Lucky duck!

Sandie,

I hate being in limbo, but it is dangerous to read reports

by ourselves and guess. I'd say you need a pulmonologist

right away. You'll get some answers there, no matter what

type of lung ailment you've got. Hang in there and keep us

posted!

Hugs and blessings,

Gwynne IPF 7/04 listed for transplant 3/07 Texas

[Guest guest]

Sher: Sher: Sher: Guessed wrong on my need to know. You're doing

pretty well without knowing and I don't think you would choose

prednisone anyway from what you've said, so would likely not gain you

information of value. I would question why he said IPF and now

doesn't and perhaps seek a second opinion though.

Pulmonary Hypertension-High blood pressure in the arteries in your

lungs. It can be a primary disease or secondary to many including PF.

With ILD it results from the scar tissue caused by ILD compressing or

obliterating the arteries or capillaries.

Pulmonary hypertension requires monitoring and is normally detectable

in echocardiograms. There are quite a few medications for it (I can

just see Sher on Viagra...yes, it is one, just under another name,

Revatio).

Overall it all sounds like good news. Now, I would perhaps ask that

the oxygen issue be looked at again. I would at least get my levels

monitored under various conditions, maybe 24 hours, at least sleep.

Your doctor may need to be more aggressive to get you approved. There

are other criteria for part time use. A single 6 minute walk

certainly isn't enough, in my opinion, to disqualify you. Pulmonary

Hypertension adds to the equation. If for instance you are dropping

during sleep and have PH, you would probably qualify for at least

sleep.

So, I'm far from encouraging a VATS, but encouraging some additional

examination and reconsideration of oxygen.

>

> Peggy...what is this " Pulmonary Hypertension " ? I can go search it

but tell me in easy words.

> Saw my Dr. today. Briefly...he does not think I have IPF because

I'm not sick enough after 2 years. There have been no significant

changes since 3-06.

> He doesn't think it necessary to do a VATS right now, thinking it

won't give him any more info. than we have right now with PFTS and C-

scans. So it's a watch and wait right now. As I said, there is no

doubt I have ILD but what kind or if it's something else we don't

know.

> I think I feel Bruce's " need to know " rising in my brain. No news

is good news but I'm not sure I like just waiting for progression to

happen!

> He ordered rehab for me again. Couldn't do it for a long time

because of the pain and sob, but that's under control now. While I

was doing rehab before, a heart problem surfaced so now I guess I'll

have to trace that down.

> I keep track of mileage and we already have nearly 3000 miles just

for medical travel!

> Oh well.

>

> Sher; ipf 3-06; OR.

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

>

[Guest guest]

Peggy and Everyone Else,

I do not recall exactly what Pulmonary hypertenion is, but my mother

had it with her COPD and it is very serious. I think it is like high

blood pressure but it is pressure in your lungs. What is your doctor

doing for you for it?

I got more sleep last night and am tired now so hopefully will get

sleep tonight. I've been having a sinus infection since before my

lung collapsed and kept complaining to my pulmonary doctor while I

was in the hospital but he wasn't doing anything about it other than

a nasal steroid spray he had given me a sample of on when I was there

for my bronco on Nov. 20. On my discharge papers which I got a copy

of today he listed my sinus problem simply as post nasal drip instead

of saying it was a sinus infection. (I had taken a photo of a

Kleenix one day for evidence- but he had said he didn't need to see

the photo would just take my word; but thought once I got home in my

clean enivornment with more humidity I would do better. So I called

my primary care doctor's office yesterday and told his nurse I still

had the sinus infection (for which he had prescribed 7 days of

Levaquin a week before my lung collapsed) and that I had been in the

hospital for 10 days because my lung had collapsed and asked if he

could give me another RX for Levaquin and he did. I did also get my

pulmonary doctor to prescribe Zyrtec (antihistamine) to see if it

would help my allergies as I was out of Allegra and Claritin doesn't

do anything for me and I didn't think Allegra was doing anything. I

took the Zyrtec last night after picking up the RX since it said it

can make you drowsy so figured it may help with the sleep problem. I

am also using a sinus flush every morning and think this is helping.

I am breathing better except when I bend over or even put my chin

down and notice it is the same days that I am real shaky and am

having swelling from fluid retention. My pulmonary doctor is pleased

that I am very active at home and was going out shopping, but I tend

to overdo and that start getting really weak, shaky, SOB, leg swells

and hurts more and get cranky. My pulmonary doctor doesn't want me

to take Lassix (diuretic) every day but did write me an RX for it for

1 pill per week (even though he said if I needed to take it 2 or 3

times a week that would be o.k.) But I do have to take Potassium RX

the days I use the diuretic and those pills are so huge I choked on

one tonight, which was scary but I coughed it out.

We got our first snow here last night & I got up at 8 a.m. and looked

out my bedroom window and took a photo with my cell phone. Later in

the day I was going to walk outside and take photos in front of the

house, but when I got on my front porch I saw the driveway was ice

coated so went back into the house.

When is our next CHAT? I'd like to participate if I am up to it that

day. I couldn't go to pulm rehab on Tues. because i had to wait for

UPS to deliver my Dec. meds from the hospital; and I don't think I

will go tomorrow because of my shakiness and ice on parking lots,

etc. With this shakiness I could just see me falling down on the ice

and breaking something so my plan tomorrow is to get my cluttered

living room/dining room (called the gathering room amd I have

gatahered too much stuff into that room but then am to worn out to do

anything) straightened up so I can start wrapping my grandkids

gifts. I haven't even sent my grand daughter in Lafayette her

birthday gifts (her birthday was Oct. 6 and her brother's was Dec. 2)

because I have been such a shaky mess every since they gave me those

high doses of that steroid in Sept. I just hope this past 10 days

with all those 3 days of that steroid again plus 7 days of the

Thymoglobulin stops the " minimal rejection " .

How is doing? I haven't seen a post from him in a long time,

but I also haven't been on the computer that often to even read the

posts.

Interesting things happened while I was in the hospital last week.

1. I met the gentleman who got the right lung from the same donor as

my left lung.

He has been having a rough time & hospitalized several times

already. In fact he was still in critical care on the 10th day when

I was released after my transplant.

2. I met another couple whose last name is Zuber which was my

grandfather's name & it turns out their ancestors are from Germany

and Switzerland which is where mine are from. Also, he had IPF and

has other family members who have had it. She has written a

childrens book " The Broken Doll " and I bought 2 of them from her. I

plan on staying in touch with both couples. Her husband was in the

hospital because the lung he got 2 years ago is failing and he is up

for another transplant so they are trying to work him up so he will

be strong enough for it.

3. Ralph, the guy who got the right lung told me he had gotten a

card from the donor's family. When I got home and looked through my

mail I also had a card from a female named Sara who said the donor

was her mom. I am guessing she is a teenager and will be writing her

a note, but during the first year you have to send it through the

transplant team and not allowed to give out your last names.

4. 7 years ago I was doing a bunch of job interviews in Dec. right

before Christmas and ended up doing some of my Christmas shopping at

airports. This year I was in my pajamas and robe and did some

shopping in the hospital gift shops. :-)

I'm hoping I feel strong enough tomorrow to get my cluttered

gathering room straightened up so I can put decorations on my

Christmas tree. I bought a 4' one this year that already had lights

on it. I had given my 9' tree to my son when I moved from Ohio to

Baltimore in 99 and the last few years I simply used some small

trees. I have one that is 3', a glass one that was my mom's, and a

21 " one that I originally had bought for my work desk but used it

last 2 years simply pulled it out of the bag and plugged it in

because I went to Hawaii for Christmas the last 5 years. I hope my

son and family in Lafayette will be able to come over here for

Christmas. But it will depend on their health, weather, and when

has to work. She is working at Macy's now & he has a job with

a company out of New York that puts up those wind mills that produce

electricity; however, he was laid off for 2 weeks as the company was

starting a new project to erect 250 windmills & weather impacts the

delivery of the parts. I told him tonight he may have made a mistake

by staying with that company when he had been offered a job over here

through a contractor in KY, but I understand with wanting to be with

his family and the holidays, plus he has problems with his one van

and cannot afford to get it fixed. He told me though he was

concerned that if he had taken the job over here (which would have

meant he would be staying here at my house during the week) that he

could make me sick since construction sights are so dirty. I had

forgotten about the fact that the post transplant instructions state

that if you are outside in a construction area to be sure to wear a

mask, because construction sites stir up bacteria into the air.

Well I've rambled long enough that I've gotten sleepy and relaxed

now. I hope all of you who are having more problems now get some good

help from your medical teams and family members and have a wonderful

holiday season. Since our winter weather has arrived I will have to

finish my shopping either on line or on the phone. I still have to

compose my annual Christmas letter and have had so much happen this

year I am not sure how I am going to write it, but I want to keep it

to one page but I also have a special Christmas card this year for

which I have a story to tell. I also have intentions of baking some

nut breads to send off to my families but Christmas is getting closer

every day and I am beginning to think I might do my baking the week

after Christmas. So in case I don't get back on line I going to give

you all my holiday wishes with this email now.

Mele Kalikimaka and Hou oli' Makahiki Ho

Judy IPF 11/06 - left lung transplant 8/07

collapsed lung after bronco and biopsy 11/07

P.S. After my transplant the song " Amazing Grace " kept going through

my head and one point I was actually whisteling it while I was

walking into my laundry room. I played some Christmas CDs today and

was able to actually sing a couple of songs, but I was singing Alto

and used to be First Soprano. But it excited me that I could

actually sing a little.

>

> Peggy...what is this " Pulmonary Hypertension " ? I can go search it

but tell me in easy words.

> Saw my Dr. today. Briefly...he does not think I have IPF because

I'm not sick enough after 2 years. There have been no significant

changes since 3-06.

> He doesn't think it necessary to do a VATS right now, thinking it

won't give him any more info. than we have right now with PFTS and C-

scans. So it's a watch and wait right now. As I said, there is no

doubt I have ILD but what kind or if it's something else we don't

know.

> I think I feel Bruce's " need to know " rising in my brain. No news

is good news but I'm not sure I like just waiting for progression to

happen!

> He ordered rehab for me again. Couldn't do it for a long time

because of the pain and sob, but that's under control now. While I

was doing rehab before, a heart problem surfaced so now I guess I'll

have to trace that down.

> I keep track of mileage and we already have nearly 3000 miles just

for medical travel!

> Oh well.

>

> Sher; ipf 3-06; OR.

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

>

[Guest guest]

Sher:

Back to my list as to why I would or wouldn't do VATS.

1-Without it do they feel certain as to your form of disease or not?

2-Are you going to do anything different as a result of what you find

out?

3-What is your health status and the current strength of your lungs

and

body in general?

4-What is your personal, psychological need to know the specific

disease.

5-Sometimes its needed for trials and/or transplants later.

I think the big one might very well be " would you take prednisone if

they said you had a form of Pulmonary Fibrosis other than

IPF/Idiopathic Pulmonary Fibrosis? " The second question is would they

recommend a VATS based on your current physical condition and age.

I don't know where you are or if its a teaching hospital or what.

Maybe I did and am senile and forgot. Even if you don't go elsewhere

for another opinion they can always send your charts and your CT's

for one.

I rejoice in the hope you don't have IPF. One specific question would

be do they see honeycombing on the CT. Now, IPF can occasionally

progress slower, but your current condtion doesn't appear consistent

with most persons with IPF for the period you've supposedly had it.

I'd also say....regardless of how many pulmonologists you've seen, if

you don't have confidence in the current one, change.

Now as to the viagra...omg between the thought of you on viagra and

the thought of you on prednisone with 'roid rage.......I'm getting

scared. I just think its funny they use a different name for

sildenfil based on its use (Viagra, Revatio, and there are others). I

would love to see Sher going to the pharmacy and picking up her

monthly supply of 90 Viagra. (Revatio just doesn't have the same

effect). lol.

>

> Bruce, Bruce, Bruce...when you had your VATS you said it was

your " need to know " (among other reasons). I'm now feeling my

own " need to know " rising up.

> I've already had a second opinion. This is the third pulmonary-guy.

First two said IPF for usual reasons...this Dr. said same thing. Two

years down the road now I have had little progression so he is

changing his Dx. (I would be much sicker and on O2 after two years if

IPF is correct.)

> Just sitting and waiting doesn't suit me much so I'm sitting and

waiting to be inspired as to what I want to do next.

> It goes without saying that I'm glad I'm stable. However, on the

other hand I'm getting weary of rotating through his office without

really any information beyond the Dx. of ILF, and/or treatment.

> Ok now, watch for it, here it comes...I wonder if Viagra would make

me a bigger hard a__ then I already am!

> Sorry, sometimes I just gotta spit that stuff out or choke.

> I've been monitored during sleep. Normal. I only mention PH because

of Peggy's post and I don't know what it is. Thanks for your

explanation.

>

> Sher; ipf 3-06; OR.

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

>

[Guest guest]

Sher: I forgot one thing. You had sleep check sometime back. Get a 24

hour monitor/oximeter and while you have it exert yourself heavily.

Make it one of your busier and more active days. That way you won't

be guessing about whats going on as far as your sats. It will confirm

and solve that issue easily. If your sats drop too low too much you

need oxygen. If not, you don't and your sob might be a million other

less critical things. (Talking can make one sob...you don't talk much

do you? lol).

I've picked on Sher so true story of my own sats. When I went to

respiratory rehab and was on treadmill at only 2 mph my sats were

fine on 3 liters continuous flow oxygen. However, when I got busy

talking to the person next to me, they started dropping and, while

not too low, enough for me to go to 4 liters.....lol

> >

> > Bruce, Bruce, Bruce...when you had your VATS you said it was

> your " need to know " (among other reasons). I'm now feeling my

> own " need to know " rising up.

> > I've already had a second opinion. This is the third pulmonary-

guy.

> First two said IPF for usual reasons...this Dr. said same thing.

Two

> years down the road now I have had little progression so he is

> changing his Dx. (I would be much sicker and on O2 after two years

if

> IPF is correct.)

> > Just sitting and waiting doesn't suit me much so I'm sitting and

> waiting to be inspired as to what I want to do next.

> > It goes without saying that I'm glad I'm stable. However, on the

> other hand I'm getting weary of rotating through his office

without

> really any information beyond the Dx. of ILF, and/or treatment.

> > Ok now, watch for it, here it comes...I wonder if Viagra would

make

> me a bigger hard a__ then I already am!

> > Sorry, sometimes I just gotta spit that stuff out or choke.

> > I've been monitored during sleep. Normal. I only mention PH

because

> of Peggy's post and I don't know what it is. Thanks for your

> explanation.

> >

> > Sher; ipf 3-06; OR.

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

> >

>

[Guest guest]

Well it's not quite like being told there is NOTHING there. Now my thoughts shift once more to, OK what is it?

But yes, I am glad, of course.

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

[Guest guest]

Hi, sorry to butt in, I'm trying to follow the threads, but I have no

idea what you mean by VATS. Can you enlighten me? It's probably an

across the pond thing!

> >

> > Bruce, Bruce, Bruce...when you had your VATS you said it was

> your " need to know " (among other reasons). I'm now feeling my

> own " need to know " rising up.

> > I've already had a second opinion. This is the third pulmonary-

guy.

> First two said IPF for usual reasons...this Dr. said same thing.

Two

> years down the road now I have had little progression so he is

> changing his Dx. (I would be much sicker and on O2 after two years

if

> IPF is correct.)

> > Just sitting and waiting doesn't suit me much so I'm sitting and

> waiting to be inspired as to what I want to do next.

> > It goes without saying that I'm glad I'm stable. However, on the

> other hand I'm getting weary of rotating through his office

without

> really any information beyond the Dx. of ILF, and/or treatment.

> > Ok now, watch for it, here it comes...I wonder if Viagra would

make

> me a bigger hard a__ then I already am!

> > Sorry, sometimes I just gotta spit that stuff out or choke.

> > I've been monitored during sleep. Normal. I only mention PH

because

> of Peggy's post and I don't know what it is. Thanks for your

> explanation.

> >

> > Sher; ipf 3-06; OR.

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

> >

>

[Guest guest]

VATS is a Video Assisted Thorocoscopic Surgery which is a lung biopsy

laparoscopically performed as opposed to the older open lung biopsy.

It may be used to determine the specific form of ILD (Interstitial

Lung Disease) or PF (Pulmonary Fibrosis) a person has. It consists of

three incisions, two on your side and one in the breast area. A piece

of your lung is removed to be biopsied. Although less invasive than

an open lung biopsy, it is still an invasive procedure and generally

requires hospitalization of 3-5 days.

> > >

> > > Bruce, Bruce, Bruce...when you had your VATS you said it was

> > your " need to know " (among other reasons). I'm now feeling my

> > own " need to know " rising up.

> > > I've already had a second opinion. This is the third pulmonary-

> guy.

> > First two said IPF for usual reasons...this Dr. said same thing.

> Two

> > years down the road now I have had little progression so he is

> > changing his Dx. (I would be much sicker and on O2 after two

years

> if

> > IPF is correct.)

> > > Just sitting and waiting doesn't suit me much so I'm sitting

and

> > waiting to be inspired as to what I want to do next.

> > > It goes without saying that I'm glad I'm stable. However, on

the

> > other hand I'm getting weary of rotating through his office

> without

> > really any information beyond the Dx. of ILF, and/or treatment.

> > > Ok now, watch for it, here it comes...I wonder if Viagra would

> make

> > me a bigger hard a__ then I already am!

> > > Sorry, sometimes I just gotta spit that stuff out or choke.

> > > I've been monitored during sleep. Normal. I only mention PH

> because

> > of Peggy's post and I don't know what it is. Thanks for your

> > explanation.

> > >

> > > Sher; ipf 3-06; OR.

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

> > >

> >

>

[Guest guest]

Make a long list of questions and force your doctor to discuss them

all with you. However, if its another form of PF other than IPF,

Prednisone generally is the med they recommend. So discuss that. I

chose not to take prednisone for IPF so we're somewhat similar in

that respect. I think they should be able to give you more

information without the VATS. The fact is you feel pretty good today,

lungs functioning pretty well, but other medical problems. I can say

given your circumstances I doubt I would have chosen VATS, alhough

one can never know unless they are there. I had to have very strong

assurances from my surgeon. I think there is just more information

they should be able to give you without VATS at this point. Now it

could or could not affect your VATS decision. But the start is " what

could I have and if you knew how would you treat it " .

>

> Bruce...thanks for your little list. No, Dr. is not certain re:

disease.

> 2..I will not take Prednisone but if it's not IPF another med may

help me.

> 3..my general health is not all that good, don't know the strength

of my lungs...never inquired.

> 4..my personal need to know seems to have increased since being

told he doubted IPF. With that Dx I just " turned off " , knowing no tx

no cure. Now I want to know what do I have????

> 5..transplant is not for me. I'm too old and too overweight for

their guidelines.

> There is a teaching hospital , OHSU, about 25 miles from me.

Insurance plays a part in not going there but I may be willing to pay

a higher co-pay if I think it would benefit me. It's one of my

considerations now.

> I have to be careful what I ask for...I may get it. Such as I can't

be too insistent about more aggressive tx because it comes back to a

VATS.

> In our area, I've now seen the top three Pulmonary Drs. I don't see

much point in beating a dead horse and sending my charts off to

someone new. These three men qualify.

> I've just come full circle...back to square one...what do I have,

how do we treat it?

> Thanks Bruce.

> Sher; ipf 3-06; OR.

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

>

[Guest guest]

Your doctor can easily order a 24 hour test.

>

> Bruce...surprise, surprise. I really don't talk much. On this board

my fingers fairly fly but most of the time I'm reclusive.

> I'll have to see where I can get an oximotor for what you suggest.

Good idea.

> I know when at rehab I can't do it without O2. But often my sats

don't drop to critical areas. Stay up in low 90s. I'm throwing PCPs all

over the place. I've had my heart checked..there are some

abnormalities. Have to pursue this.

> Sher; ipf 3-06; OR.

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

>

[Guest guest]

They didn't dig anything into my sternum.....I would have screamed

had they done so.....

That does serve as a reminder that every test varies based on our

condition. I can easily see a stress test being worse in the future.

And, we still love you just as much even when you have the

grumpies.....now if you have fleas, that may be another story.

> > > > > > >

> > > > > > > Peggy,

> > > > > > > No need to worry, but thanks for your concern, sweet

> > > > > > > friend. I've just been involved in too many things at

once,

> > > > > > > and sometimes it just takes more time than I've got to

> > > > > > > stay current with the board. My dad is out of town &

I've

> > > > > > > been trying to be there more for my mom while he's away.

> > > > > > > Yesterday I spent the day in bed without a drop of

energy,

> > > > > > > but am feeling stronger today. Hope your eye is doing

> > better.

> > > > > > >

> > > > > > > My sincere sympathy goes out to the wife and family of

> > > > > > > Heidler, a valued member of this forum.

> > > > > > >

> > > > > > > ,

> > > > > > > The negligence on the part of that doc is staggering!!

> > > > > > > and Jim,

> > > > > > > I'm truly sorry about the loss of your friends. My

friends

> > > > > > > are deeply cherished treasures, so I feel your loss.

> > > > > > > Jim, I'm on CellCept, a powerful immunosuppresant. I

> > > > > > > am a pre-transplant patient, and it's used as an anti-

> > > > > > > rejection drug later. But I believe I'm getting it now

> > > > > > > because of the presence of antibodies that I have that

> > > > > > > they're hoping to reduce in number. I've been on it

> > > > > > > for nearly two years and haven't had any side effects.

> > > > > > >

> > > > > > > Jon and Teri,

> > > > > > > That's great news about Jaydn. I know you're relieved!!

> > > > > > >

> > > > > > > Jim Moye,

> > > > > > > I'm sorry for your IPF diagnosis, but glad you found

such

> > > > > > > a genuinely caring group as this. Welcome, fellow Texan.

> > > > > > >

> > > > > > > Which Jim is Jimbo?

> > > > > > >

> > > > > > > Zena,

> > > > > > > We're here for you, although I'm sorry you have the

> > > > > > > need for a support group such as this. This is a safe

place

> > > > > > > to vent, laugh, cry, learn, and inform, among very

caring

> > > > > > > individuals. Please keep us posted on your status.

> > > > > > >

> > > > > > > ,

> > > > > > > I'm thinking of you and wondering if you've had the

> > procedure.

> > > > > > > Prayers are going up for you, dear lady.

> > > > > > >

> > > > > > > Vicky,

> > > > > > > I'm glad to see your post and delighted with your test

> > > > results!!!

> > > > > > >

> > > > > > > Joyce,

> > > > > > > I'm sorry about your bubble head fiasco. Not funny, I'm

> > > > > > > sure. Glad we don't have to write to you in the slammer!

> > > > > > > I haven't been around much lately, and I think I

> > > > > > > failed to respond to you about masks and my

> > > > > > > glasses. Well, I've never used a mask of any kind.

> > > > > > > Supposedly, my glasses are good up to 5L, but they're

> > > > > > > all I use except when I'm hooked up directly to my

> > > > > > > reservoirs. My sats indicate that I'm getting what I

> > > > > > > need - not that mine don't fall often and hard, but

> > > > > > > I'm convinced they would anyway whenever I move

> > > > > > > around.

> > > > > > >

> > > > > > > ,

> > > > > > > You ARE pretty! Thank you SO much for the lovely

> > > > > > > travel photos. They are breathtaking!

> > > > > > >

> > > > > > > Lou,

> > > > > > > I love leftovers. We had nice paper plates at

> > > > > > > Thanksgiving and it was great to have the extra time

> > > > > > > to spend together instead of cleaning up! Enjoy!!

> > > > > > >

> > > > > > > Sher,

> > > > > > > Congratulations on the new great-grand babe. Lucky duck!

> > > > > > >

> > > > > > > Sandie,

> > > > > > > I hate being in limbo, but it is dangerous to read

reports

> > > > > > > by ourselves and guess. I'd say you need a pulmonologist

> > > > > > > right away. You'll get some answers there, no matter

what

> > > > > > > type of lung ailment you've got. Hang in there and keep

us

> > > > > > > posted!

> > > > > > >

> > > > > > > Hugs and blessings,

> > > > > > > Gwynne IPF 7/04 listed for transplant 3/07 Texas

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Oh......you still have your Queenship.....your Royal Highness. You

may just need to learn to use it more. Don't think of it as more

helpless. Think of it as royalty doesn't have to do some things the

lowly subjects do.

Glad to hear you use the word " angry " though. We often mask anger

with sadness and refuse to admit the anger. The fact you know you are

is a credit and will help you deal with it. Anyone in your condition

who claims not to get angry is either a Saint or Lying to themselves.

Right now my anger is at our disease not getting the attention it

needs. Its about lack of organ donors. Its about what I see many here

go through to get answers. Its when I get solicitations from ALA and

wish they would spend the money on PF rather than mail. Its when I

see the Canadian Lung Association not even properly define the

disease. My time to get angry at what I can no longer do is yet to

come, but I know I will.

Bearies...oh maybe I need to go hug and talk to one of my

bears....either a polar bear or one of the beanie babies.

> >

> > Joyce...I don't think you have the grumpies. I think you have the

> grin-and bearies.

> > I'm sure sorry you have so much on your plate. Wish I could help

you

> carry it.

> > Sher; ipf 3-06; OR.

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

> >

>

[Guest guest]

Joyce,NO way will you ever lose your Queenship. You are the queen of all queens and I am so thankful for you. You are a true inspiration to all....and DON"T YOU FORGET THAT! :-)CYndi (DAD PF 12/05)Joyce wrote: Sher, It is so hard to be cheerful when you are angry. I am angry because I have turned into someone else. I've lost my Queenship around here! I am becoming more and more

helpless and I hate it. It is just something that I have to work through and you guys just have to love me and tolerate me and my grumpies. It is in the rule book. Hugs, Joyce D. (ps. I like "the grin and bearies")PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Joyce...I don't think you have the grumpies. I think you have the grin-and bearies.> I'm sure sorry you have so much on your plate. Wish I could help you carry it.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

"THE rule is the Queen can do ANYTHING and SAY ANYTHING she wants and we will love her."Law of the board for all you newbies.  Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Sher,It is so hard to be cheerful when you are angry.  I am angry because I have turned into someone else.  I've lost my Queenship around here!  I am becoming more and more helpless and I hate it.  It is just something that I have to work through and you guys just have to love me and tolerate me and my grumpies.  It is in the rule book.  Hugs, Joyce D.  (ps. I like "the grin and bearies")PULMONARY FIBROSIS/LUPUS 1997    BRONCHIECTASIS 2004   INDIANA 2 COR. 12:10   ....when I am weak, then I am strong.>> Joyce...I don't think you have the grumpies. I think you have the grin-and bearies.> I'm sure sorry you have so much on your plate. Wish I could help you carry it.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Amen Princess Peggy! As one of the Queen's devoted subjects I firmly agree! Sarcoid/PF 3/2006 California Re: Re: Hi All

"THE rule is the Queen can do ANYTHING and SAY ANYTHING she wants and we will love her."Law of the board for all you newbies. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks

up." Sher,It is so hard to be cheerful

when you are angry. I am angry because I have turned into someone else. I've lost my Queenship around here! I am becoming more and more helpless and I hate it. It is just something that I have to work through and you guys just have to love me and tolerate me and my grumpies. It is in the rule book. Hugs, Joyce D. (ps. I like "the grin and bearies")PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Joyce...I don't think you have the grumpies. I think you have the grin-and bearies.> I'm sure sorry you have so much on your plate. Wish I

could help you carry it.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Beth, I second your nomination for

Queenship for Joyce D,

Z fibriotic NSIP/05

Z fibriotic NSIP/o5/PA

And “mild” PH/10/07 and Reynaud’s

too!!

Potter, reader,carousel lover and

MomMom to

Darah

“I’m

gonna

be iron like a lion in Zion” Bob Marley

Beth wrote:

Joyce,

Just need to pop in and tell you you'll NEVER lose your

queenship around here. You will always be our royal majesty and we

love you!!

Beth in NC Fibrotic NSIP 06/06

"At the evening of life

we shall be judged on our love."

St of the

Cross

-----

Original Message ----

From: Joyce <janne5303>

To: Breathe-Support

Sent: Thursday, December 6, 2007 8:24:27 PM

Subject: Re: Hi All

Sher,

It is so hard to be

cheerful when you are angry. I am angry because I have turned into

someone else. I've lost my Queenship around here! I am becoming more

and more helpless and I hate it. It is just something that I have to

work through and you guys just have to love me and tolerate me and my

grumpies. It is in the rule book. Hugs, Joyce D. (ps. I like "the

grin and bearies")

PULMONARY

FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

2 COR.

12:10 ....when I am weak, then I am strong.

>

> Joyce...I don't think you have the grumpies. I think you have the

grin-and bearies.

> I'm sure sorry you have so much on your plate. Wish I could help

you carry it.

> Sher; ipf 3-06; OR.

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

>

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.15/1174 - Release Date: 12/6/2007 10:11 AM

[Guest guest]

Joyce, Oh do I agree about the pain thing. I have had so many surgeries  tells the insurance companies they should only charge half for me cause I don't have anything left. When I had my hip replacement I think that did it for me. I just can't take anymore of the pain. Think I am done. This eye thing did not help. I am thinking about going to Gainsville and have the other one done but I would probably get a 1st year student...Yikes.  thinking about it. Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Bruce,Sorry Brucie, but it was not painless for me.  I have had several and it hurts when they dig that thing into my sternum.  My chest wall has always been sore since I had Costochronditis, so maybe that is why it hurt.  The stress one ...... I hated.  Scared me ..... they couldn't get my heart slowed down and had to inject something.  I do not like tests.  Most are unpleasant. Wait till you are 10 years out and the medicos have done every hideous test they can dream up on your poor body.  I just dread them all.  I have gotten so pain sensitive in the last couple of years.  I used to be brave. As you can see, I still have the Grumpies.  They are hanging on like fleas on a dog.Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997    BRONCHIECTASIS 2004   INDIANA 2 COR. 12:10   ....when I am weak, then I am strong.> > > > > >> > > > > > Peggy,> > > > > > No need to worry, but thanks for your concern, sweet> > > > > > friend. I've just been involved in too many things at once,> > > > > > and sometimes it just takes more time than I've got to> > > > > > stay current with the board. My dad is out of town & I've> > > > > > been trying to be there more for my mom while he's away.> > > > > > Yesterday I spent the day in bed without a drop of energy,> > > > > > but am feeling stronger today. Hope your eye is doing > better.> > > > > >> > > > > > My sincere sympathy goes out to the wife and family of> > > > > > Heidler, a valued member of this forum.> > > > > >> > > > > > ,> > > > > > The negligence on the part of that doc is staggering!!> > > > > > and Jim,> > > > > > I'm truly sorry about the loss of your friends. My friends> > > > > > are deeply cherished treasures, so I feel your loss.> > > > > > Jim, I'm on CellCept, a powerful immunosuppresant. I> > > > > > am a pre-transplant patient, and it's used as an anti-> > > > > > rejection drug later. But I believe I'm getting it now> > > > > > because of the presence of antibodies that I have that> > > > > > they're hoping to reduce in number. I've been on it> > > > > > for nearly two years and haven't had any side effects.> > > > > >> > > > > > Jon and Teri,> > > > > > That's great news about Jaydn. I know you're relieved!!> > > > > >> > > > > > Jim Moye,> > > > > > I'm sorry for your IPF diagnosis, but glad you found such> > > > > > a genuinely caring group as this. Welcome, fellow Texan.> > > > > >> > > > > > Which Jim is Jimbo?> > > > > >> > > > > > Zena,> > > > > > We're here for you, although I'm sorry you have the> > > > > > need for a support group such as this. This is a safe place> > > > > > to vent, laugh, cry, learn, and inform, among very caring> > > > > > individuals. Please keep us posted on your status.> > > > > >> > > > > > ,> > > > > > I'm thinking of you and wondering if you've had the > procedure.> > > > > > Prayers are going up for you, dear lady.> > > > > >> > > > > > Vicky,> > > > > > I'm glad to see your post and delighted with your test > > > results!!!> > > > > >> > > > > > Joyce,> > > > > > I'm sorry about your bubble head fiasco. Not funny, I'm> > > > > > sure. Glad we don't have to write to you in the slammer!> > > > > > I haven't been around much lately, and I think I> > > > > > failed to respond to you about masks and my> > > > > > glasses. Well, I've never used a mask of any kind.> > > > > > Supposedly, my glasses are good up to 5L, but they're> > > > > > all I use except when I'm hooked up directly to my> > > > > > reservoirs. My sats indicate that I'm getting what I> > > > > > need - not that mine don't fall often and hard, but> > > > > > I'm convinced they would anyway whenever I move> > > > > > around.> > > > > >> > > > > > ,> > > > > > You ARE pretty! Thank you SO much for the lovely> > > > > > travel photos. They are breathtaking!> > > > > >> > > > > > Lou,> > > > > > I love leftovers. We had nice paper plates at> > > > > > Thanksgiving and it was great to have the extra time> > > > > > to spend together instead of cleaning up! Enjoy!!> > > > > >> > > > > > Sher,> > > > > > Congratulations on the new great-grand babe. Lucky duck!> > > > > >> > > > > > Sandie,> > > > > > I hate being in limbo, but it is dangerous to read reports> > > > > > by ourselves and guess. I'd say you need a pulmonologist> > > > > > right away. You'll get some answers there, no matter what> > > > > > type of lung ailment you've got. Hang in there and keep us> > > > > > posted!> > > > > >> > > > > > Hugs and blessings,> > > > > > Gwynne IPF 7/04 listed for transplant 3/07 Texas> > > > > >> > > > >> > > > >> > > > >> > > >> > >> > >> > >> >>

[Guest guest]

I'd say I understand, but I don't. I haven't felt the pain of all the

surgeries you have nor lived with the pain you do. All I can say is

you're a remarkable woman and I just hope that most days the good

still outpaces the bad. I don't think the doctors ever fully

appreciate the pain. Heck, I was getting an ABG done and after poking

and missing eight times (and I assure you that wasn't fun) the tech

said the problem was I needed to relax. I wanted to just grab that

needle and poke her a few times in random areas.

> > > > > > > >

> > > > > > > > Peggy,

> > > > > > > > No need to worry, but thanks for your concern, sweet

> > > > > > > > friend. I've just been involved in too many things

at

> > once,

> > > > > > > > and sometimes it just takes more time than I've got to

> > > > > > > > stay current with the board. My dad is out of town &

I've

> > > > > > > > been trying to be there more for my mom while he's

away.

> > > > > > > > Yesterday I spent the day in bed without a drop of

energy,

> > > > > > > > but am feeling stronger today. Hope your eye is doing

> > > better.

> > > > > > > >

> > > > > > > > My sincere sympathy goes out to the wife and family of

> > > > > > > > Heidler, a valued member of this forum.

> > > > > > > >

> > > > > > > > ,

> > > > > > > > The negligence on the part of that doc is staggering!!

> > > > > > > > and Jim,

> > > > > > > > I'm truly sorry about the loss of your friends. My

friends

> > > > > > > > are deeply cherished treasures, so I feel your loss.

> > > > > > > > Jim, I'm on CellCept, a powerful immunosuppresant. I

> > > > > > > > am a pre-transplant patient, and it's used as an anti-

> > > > > > > > rejection drug later. But I believe I'm getting it now

> > > > > > > > because of the presence of antibodies that I have that

> > > > > > > > they're hoping to reduce in number. I've been on it

> > > > > > > > for nearly two years and haven't had any side effects.

> > > > > > > >

> > > > > > > > Jon and Teri,

> > > > > > > > That's great news about Jaydn. I know you're

relieved!!

> > > > > > > >

> > > > > > > > Jim Moye,

> > > > > > > > I'm sorry for your IPF diagnosis, but glad you found

such

> > > > > > > > a genuinely caring group as this. Welcome, fellow

Texan.

> > > > > > > >

> > > > > > > > Which Jim is Jimbo?

> > > > > > > >

> > > > > > > > Zena,

> > > > > > > > We're here for you, although I'm sorry you have the

> > > > > > > > need for a support group such as this. This is a

safe

> > place

> > > > > > > > to vent, laugh, cry, learn, and inform, among very

caring

> > > > > > > > individuals. Please keep us posted on your status.

> > > > > > > >

> > > > > > > > ,

> > > > > > > > I'm thinking of you and wondering if you've had the

> > > procedure.

> > > > > > > > Prayers are going up for you, dear lady.

> > > > > > > >

> > > > > > > > Vicky,

> > > > > > > > I'm glad to see your post and delighted with your test

> > > > > results!!!

> > > > > > > >

> > > > > > > > Joyce,

> > > > > > > > I'm sorry about your bubble head fiasco. Not funny,

I'm

> > > > > > > > sure. Glad we don't have to write to you in the

slammer!

> > > > > > > > I haven't been around much lately, and I think I

> > > > > > > > failed to respond to you about masks and my

> > > > > > > > glasses. Well, I've never used a mask of any kind.

> > > > > > > > Supposedly, my glasses are good up to 5L, but they're

> > > > > > > > all I use except when I'm hooked up directly to my

> > > > > > > > reservoirs. My sats indicate that I'm getting what I

> > > > > > > > need - not that mine don't fall often and hard, but

> > > > > > > > I'm convinced they would anyway whenever I move

> > > > > > > > around.

> > > > > > > >

> > > > > > > > ,

> > > > > > > > You ARE pretty! Thank you SO much for the lovely

> > > > > > > > travel photos. They are breathtaking!

> > > > > > > >

> > > > > > > > Lou,

> > > > > > > > I love leftovers. We had nice paper plates at

> > > > > > > > Thanksgiving and it was great to have the extra time

> > > > > > > > to spend together instead of cleaning up! Enjoy!!

> > > > > > > >

> > > > > > > > Sher,

> > > > > > > > Congratulations on the new great-grand babe. Lucky

duck!

> > > > > > > >

> > > > > > > > Sandie,

> > > > > > > > I hate being in limbo, but it is dangerous to read

reports

> > > > > > > > by ourselves and guess. I'd say you need a

pulmonologist

> > > > > > > > right away. You'll get some answers there, no matter

what

> > > > > > > > type of lung ailment you've got. Hang in there and

keep us

> > > > > > > > posted!

> > > > > > > >

> > > > > > > > Hugs and blessings,

> > > > > > > > Gwynne IPF 7/04 listed for transplant 3/07 Texas

> > > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Peggy: Oh, and i can assure you the random areas I was thinking about

were not in her wrist....lol

> > > > > > > > >

> > > > > > > > > Peggy,

> > > > > > > > > No need to worry, but thanks for your concern, sweet

> > > > > > > > > friend. I've just been involved in too many things

> at

> > > once,

> > > > > > > > > and sometimes it just takes more time than I've got

to

> > > > > > > > > stay current with the board. My dad is out of town

&

> I've

> > > > > > > > > been trying to be there more for my mom while he's

> away.

> > > > > > > > > Yesterday I spent the day in bed without a drop of

> energy,

> > > > > > > > > but am feeling stronger today. Hope your eye is

doing

> > > > better.

> > > > > > > > >

> > > > > > > > > My sincere sympathy goes out to the wife and family

of

> > > > > > > > > Heidler, a valued member of this forum.

> > > > > > > > >

> > > > > > > > > ,

> > > > > > > > > The negligence on the part of that doc is

staggering!!

> > > > > > > > > and Jim,

> > > > > > > > > I'm truly sorry about the loss of your friends. My

> friends

> > > > > > > > > are deeply cherished treasures, so I feel your loss.

> > > > > > > > > Jim, I'm on CellCept, a powerful immunosuppresant. I

> > > > > > > > > am a pre-transplant patient, and it's used as an

anti-

> > > > > > > > > rejection drug later. But I believe I'm getting it

now

> > > > > > > > > because of the presence of antibodies that I have

that

> > > > > > > > > they're hoping to reduce in number. I've been on it

> > > > > > > > > for nearly two years and haven't had any side

effects.

> > > > > > > > >

> > > > > > > > > Jon and Teri,

> > > > > > > > > That's great news about Jaydn. I know you're

> relieved!!

> > > > > > > > >

> > > > > > > > > Jim Moye,

> > > > > > > > > I'm sorry for your IPF diagnosis, but glad you

found

> such

> > > > > > > > > a genuinely caring group as this. Welcome, fellow

> Texan.

> > > > > > > > >

> > > > > > > > > Which Jim is Jimbo?

> > > > > > > > >

> > > > > > > > > Zena,

> > > > > > > > > We're here for you, although I'm sorry you have the

> > > > > > > > > need for a support group such as this. This is a

> safe

> > > place

> > > > > > > > > to vent, laugh, cry, learn, and inform, among very

> caring

> > > > > > > > > individuals. Please keep us posted on your status.

> > > > > > > > >

> > > > > > > > > ,

> > > > > > > > > I'm thinking of you and wondering if you've had the

> > > > procedure.

> > > > > > > > > Prayers are going up for you, dear lady.

> > > > > > > > >

> > > > > > > > > Vicky,

> > > > > > > > > I'm glad to see your post and delighted with your

test

> > > > > > results!!!

> > > > > > > > >

> > > > > > > > > Joyce,

> > > > > > > > > I'm sorry about your bubble head fiasco. Not funny,

> I'm

> > > > > > > > > sure. Glad we don't have to write to you in the

> slammer!

> > > > > > > > > I haven't been around much lately, and I think I

> > > > > > > > > failed to respond to you about masks and my

> > > > > > > > > glasses. Well, I've never used a mask of any kind.

> > > > > > > > > Supposedly, my glasses are good up to 5L, but

they're

> > > > > > > > > all I use except when I'm hooked up directly to my

> > > > > > > > > reservoirs. My sats indicate that I'm getting what I

> > > > > > > > > need - not that mine don't fall often and hard, but

> > > > > > > > > I'm convinced they would anyway whenever I move

> > > > > > > > > around.

> > > > > > > > >

> > > > > > > > > ,

> > > > > > > > > You ARE pretty! Thank you SO much for the lovely

> > > > > > > > > travel photos. They are breathtaking!

> > > > > > > > >

> > > > > > > > > Lou,

> > > > > > > > > I love leftovers. We had nice paper plates at

> > > > > > > > > Thanksgiving and it was great to have the extra time

> > > > > > > > > to spend together instead of cleaning up! Enjoy!!

> > > > > > > > >

> > > > > > > > > Sher,

> > > > > > > > > Congratulations on the new great-grand babe. Lucky

> duck!

> > > > > > > > >

> > > > > > > > > Sandie,

> > > > > > > > > I hate being in limbo, but it is dangerous to read

> reports

> > > > > > > > > by ourselves and guess. I'd say you need a

> pulmonologist

> > > > > > > > > right away. You'll get some answers there, no

matter

> what

> > > > > > > > > type of lung ailment you've got. Hang in there and

> keep us

> > > > > > > > > posted!

> > > > > > > > >

> > > > > > > > > Hugs and blessings,

> > > > > > > > > Gwynne IPF 7/04 listed for transplant 3/07 Texas

> > > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> > >

> > >

> >

>

[Guest guest]

Joyce...you will never lose your Queenship!That is based on who you are not what you have!

I enjoy so much the little nick names some have acquired!

I know what you mean by more and more helpless. I hate it too. I keep trying to see the lesson in all of this as I am a firm believer that all things happen for a reason.

We don't have to love ya, we want to love ya. We all have the same symptom: Grin and Bearies. The good ole' GG. Whether we like it or not!

Hugs to you Queen.

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

[Guest guest]

Thanks again Bruce. Your leading questions give me food for thought.

I am waiting now for a call from Dr. office and will ask my questions.

Let you know later.

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

[Guest guest]

Bruce...I didn't know a 24 hr test could be ordered. Another question when I get a call back.

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

[Guest guest]

Yes....just a oximiter with a recording device. Similar to the sleep

one, just for more time. The goal would be to see what happens when you

do activities that you believe are making you short of breath. Then

either you don't need oxygen or you do and get it. For instance, are

you suppose to be doing any walking, is that encouraged? Well, seeing

your sats when you do is quite important. Thats how I safely use my

treadmill by just turning the oxygen up a bit and I do just fine on it,

but if I did it at either no oxygen or at just my sitting flow, I'd

drop much too low and I'd be out of breath.

>

> Bruce...I didn't know a 24 hr test could be ordered. Another question

when I get a call back.

> Sher; ipf 3-06; OR.

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

>

[Guest guest]

Every possible success. Learn all you can; this site is a HUGE help. There's more BS out there on the 'net than on a farmer's field, so scrutinize everything. As we used to say in journalism school, "If your mother tells you she loves you, check your sources."

Tom

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of uncowledSent: Saturday, August 06, 2011 8:24 AMTo: ProstateCancerSupport Subject: Hi All

Just starting my journey, psa above borderline, digital exam felt lump, biopsies positive, two days ago had CT, Bone scans x-rays etc. Doc visit a week wednesday.

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[Guest guest]

Hello uncowled;Alan is always full of wisdom, as are a few others here on this group.One thing that Alan didn't mention is to NOT PANIC! At this time, it seems as though your cancer is early in it's course. As you will find out in the coming months and years, there is usually no need to hurry and make decisions. This is mostly a slow moving disease, so you have time to make the most quantified and knowledgeable choice as far as treatment, or lack of it, for you. This is not a death sentence, just a diagnosis. Gather all the info you can and ask all the questions you can. There is a list of questions floating around this list somewhere that can help you to know which questions to ask the doctor. I am sure someone will let you know where they are.Also, keep a positive outlook. I have been told that a positive outlook is half

the battle. Don't be afraid to ask questions here. This is a great support group, as you will soon find out.Dan HarrimanOrange TexasIf at first you don't succeed, maybe you shouldn't try sky diving!> Just starting my journey, psa above borderline, digital exam> felt lump, biopsies positive, two days ago had CT, Bone scans> x-rays etc. Doc

visit a week wednesday.Some suggestions:Do some reading in advance. Your local library or bookstoreprobably has some useful books on prostate cancer, or you canorder them from the Internet bookstores.Prepare a list of questions for the doctor. Write them down andbring your notes with you. I always find that when I've left thedoctor's office there were questions I meant to ask but forgotto.Bring a pen and paper to write down his answers. If he'samenable to it, you might even bring a recorder. For animportant appointment like this it can also be useful to bring afamily member or friend who can also listen to your questions andthe doctor's answers - if you have someone who would be good atthat.See if you can get copies of the PSA, biopsy, and scan reports.To make best use of resources like this support group and booksabout prostate cancer,

it will often be useful to be able to knowexactly what the reports said. Also, if you have copies of thereports you'll be able to find out things that just didn't comeup during your consultation with the doctor or, if they did comeup, you might not have fully understood them at the time.Let us know what you find out and best of luck to you. Alan