misc.

[Guest guest]

,

It's good to hear that you finally got out of bed, but

man what a week you've got! Take care, and good

luck with all the procedures and doc visits. It does

sound like a busy week for the medicos this week

with all of us.

Caro,

You have some heavy decisions to make at the

moment. Inform yourself to make sure the choices

you make are the best for you, and then don't

second-guess yourself. At some point you have

to make a decision and not look back, or you'll

go crazy. It helps a lot when you really trust that

your doctor is qualified AND caring. I wish it were

easier for you, but we'll help in any way we can.

Bruce,

I have a Jazzy power chair. I haven't used it much

lately, because I've been nervous about wheeling it

around Misha. I only use it at home, usually at night

when I'm tired, and tired of watching my sats fall.

It's best used with a portable, or else your tubing is a

tangled mess waiting to happen (gets caught up in

the wheels at some point). Like everything else, it can

be problematic, but the trade-off can be worth it.

Chairs are expensive if you've got to pay out-of-pocket.

Zena,

My pedicures are just like 's but cost more. I

LOVE pedicures, especially the leg and foot massaging.

My body massages are $60, which is pretty standard,

although I haven't had one in 3 months. It takes me

too long to get dressed and undressed now, or else

my sats bottom out. I used to get one per week. That

was a big loss for me.

,

I have often said that " I love the BAUBLES " , so imagine

my surprise when I read your post. Like you, I usually

feel that bigger is definitely better. I'm 5'8 " . I also agree

that color is vital to state of mind...color and light.

Well, and music!

Jane,

I feel positively naked without earrings.

I'm glad you like to wear jewelry. So many people I've

met who are your height say they can't carry it off. I

think that's rubbish! Go for it, girl!

S,

It's good to have another girl from Texas. I have

a good friend in Lubbock, and one of my favorite

relatives used to live there. I've gotta try this

mineral make-up y'all are talking about. Sounds great!

Irene,

How's the toe?

I agree that penguins are precious!

You'll HAVE to treat yourself to an aquarium visit

sometime.

I can see why you don't wear make-up. I've always been

SO pale, with the bags and dark circles around my eyes,

that I tend to look sick even when I'm not. Now that I'm

pale and sick, I REALLY need it, although I don't bother

unless I'm going out.

Hugs and blessings,

Gwynne 56, IPF 7/04 listed for transplant 3/07 Texas

[Guest guest]

thanks Gwynne!

Irene

---- Original Message ----

To: BREATHE-SUPPORT Information <Breathe-Support >

Sent: Sun, 20 Jan 2008 9:04 pm

Subject: misc.

Joyce,

No Y connector? 10,10,6,6? Puhlleeeeze!!! I'm speechless.

Do you mean that you have a liquid 02 reservoir that goes

up to 10?

Did you decide against the experimental med? On Friday

my doctor mentioned two drugs that he wants to read up

on for me. They're both scary but he's really wanting to

DO something for me. One is a cancer drug called Gleevec.

He isn't advocating it yet, and said even if it got to that

point, it would be my decision (just like in your case).

I'm sure the side effects can be terrible.These kinds of

decisions make you old and grumpy before your time. x-[

Irene,

I hope you're getting much-needed rest and feeling

better. ((((((((Hugs)))))))))

Mama Sher,

Geeeeeez, all that withholding of information from

you makes me want to screeeeeeaaaaaammmmm.

To me, this behavior falls under the heading of seriously

incompetent, not to mention negligent, discompassionate,

arrogant, and totally irresponsible. I've been angry off

and on for three and a half years due to poor

communications or record-keeping at my transplant

center, but at least (I think) my doctor has always been

forthright with me in stating what my health status is.

He stays frustrated that there isn't more he can do to help

me. He's never pretended to have all the answers for

the big unknowns, although he vows to keep searching

for me. He's never minimized the severity of my disease.

If your questions intimidate some people, TOUGH! Don't

they know that "If Mama ain't happy, ain't nobody happy!"?

It's a very good move to change doctors!

Tammy,

You're a star!!! I hope you are very proud of your

huge accomplishment. I'll bet you are also going

to start feeling better, if you aren't already.

,

We'll be cheering you on at . Sounds like you'll

be there when I'm meeting the transplant folks in

San . It does seem like they ought to have 02

for you in one form or another.

Jane,

It's good that is going to church and things

like that. A little exploring is good for the soul as

well as for self-confidence. I'm glad you are doing

better and staying warm... me, too. Eddie's decency

and love for you are obvious in your posts. Lucky

girl.

Tina,

It's a parent's nightmare that was taken to

to London clubs at that age. I would have been

livid. My daughter Kate was poorly supervised on a

college trip to China, and I was horrified. I went to

Paris to summer school in Paris for 6 weeks once.

It's a wonder any of us grows up, when you

consider the stuff that happens to us or that we do

when we're young!

Leanne and Peggy,

The most recent doggie photos from you two didn't

come through to me. Fortunately, I've seen photos of

your cuties before. They're lucky to be loved so much,

and we're lucky to have them! Peggy, the only red and

BURNING feeling I ever had in my hand was accompanied

by a wart-like rash, which was an allergic reaction to

cutting up raw shrimp. It does sound like maybe another

dermatologist visit's in order. Do you think you need to

see a neurologist? That may be a dumb idea, but I'm

stumped. Hope you feel better today.

I found out that I'm required to take with me to San

Antone the person who will be caring for me post-

transplant. My son insists on being that person,

whether it's in Dallas or San , for at least

two months. He's the best. My sister-in-law and

father will also be going with me. will

also be here the end of this week for a visit. He'll get

to come to the first organizational meeting of the

nonprofit I told you guys about. I think it's so

cool that he wants to go, plus I love to show him off. :-)

Tina,

You're a strong woman. I know Kaleb gives you much

of your strength, bless his heart. He's a little doll, and

he will continue to do just fine because of the type of

mother you are. I'm grateful that you have each other.

God loves you both.

Sandie,

I SO apologize if I've forgotten, but was a pulmonologist

one of the docs you saw? It just seems like you haven't

gotten all the info you deserve, or had the appropriate

tests done, by a competent pulmonology physician. I can

tell your attitude is better though. That a girl - stay strong.

,

Thank you GIO. You're always so thoughtful, and I

appreciate it. Big hugs from across the pond.

Love and blessings,

Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas

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[Guest guest]

Gwynne,

Yes, I have two that go to 10...which is what I need. The other two go to 6.

I am going to read up on Gleevec. My new doc from Duke is suggesting Cytoxan IV once a month...which of course is not new. The Rheumatologist is ready to do Retuxan, already approved by insurance, but the doc wants to discuss this all with him. Jackie, on our group is doing Retuxan. She has had two treatments so far. It costs over $10,000 a treatment. I know these are pretty harsh treatments.

Bless you!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.

>> Joyce,> No Y connector? 10,10,6,6? Puhlleeeeze!!! I'm speechless.> Do you mean that you have a liquid 02 reservoir that goes> up to 10?> Did you decide against the experimental med? On Friday> my doctor mentioned two drugs that he wants to read up> on for me. They're both scary but he's really wanting to> DO something for me. One is a cancer drug called Gleevec.> He isn't advocating it yet, and said even if it got to that> point, it would be my decision (just like in your case).> I'm sure the side effects can be terrible.These kinds of> decisions make you old and grumpy before your time. x-[> > Irene,> I hope you're getting much-needed rest and feeling> better. ((((((((Hugs)))))))))> > Mama Sher,> Geeeeeez, all that withholding of information from> you makes me want to screeeeeeaaaaaammmmm.> To me, this behavior falls under the heading of seriously> incompetent, not to mention negligent, discompassionate,> arrogant, and totally irresponsible. I've been angry off> and on for three and a half years due to poor> communications or record-keeping at my transplant> center, but at least (I think) my doctor has always been> forthright with me in stating what my health status is.> He stays frustrated that there isn't more he can do to help> me. He's never pretended to have all the answers for> the big unknowns, although he vows to keep searching> for me. He's never minimized the severity of my disease.> If your questions intimidate some people, TOUGH! Don't> they know that "If Mama ain't happy, ain't nobody happy!"?> It's a very good move to change doctors!> > Tammy,> You're a star!!! I hope you are very proud of your> huge accomplishment. I'll bet you are also going> to start feeling better, if you aren't already.> > ,> We'll be cheering you on at . Sounds like you'll> be there when I'm meeting the transplant folks in> San . It does seem like they ought to have 02> for you in one form or another.> > Jane,> It's good that is going to church and things> like that. A little exploring is good for the soul as> well as for self-confidence. I'm glad you are doing> better and staying warm... me, too. Eddie's decency> and love for you are obvious in your posts. Lucky> girl.> > Tina,> It's a parent's nightmare that was taken to> to London clubs at that age. I would have been> livid. My daughter Kate was poorly supervised on a> college trip to China, and I was horrified. I went to> Paris to summer school in Paris for 6 weeks once.> It's a wonder any of us grows up, when you> consider the stuff that happens to us or that we do> when we're young!> > Leanne and Peggy,> The most recent doggie photos from you two didn't> come through to me. Fortunately, I've seen photos of> your cuties before. They're lucky to be loved so much,> and we're lucky to have them! Peggy, the only red and> BURNING feeling I ever had in my hand was accompanied> by a wart-like rash, which was an allergic reaction to> cutting up raw shrimp. It does sound like maybe another> dermatologist visit's in order. Do you think you need to> see a neurologist? That may be a dumb idea, but I'm> stumped. Hope you feel better today.> > I found out that I'm required to take with me to San> Antone the person who will be caring for me post-> transplant. My son insists on being that person,> whether it's in Dallas or San , for at least> two months. He's the best. My sister-in-law and> father will also be going with me. will> also be here the end of this week for a visit. He'll get> to come to the first organizational meeting of the> nonprofit I told you guys about. I think it's so> cool that he wants to go, plus I love to show him off. :-)> > Tina,> You're a strong woman. I know Kaleb gives you much> of your strength, bless his heart. He's a little doll, and> he will continue to do just fine because of the type of> mother you are. I'm grateful that you have each other.> God loves you both.> > Sandie,> I SO apologize if I've forgotten, but was a pulmonologist> one of the docs you saw? It just seems like you haven't> gotten all the info you deserve, or had the appropriate> tests done, by a competent pulmonology physician. I can> tell your attitude is better though. That a girl - stay strong.> > ,> Thank you GIO. You're always so thoughtful, and I> appreciate it. Big hugs from across the pond.> > Love and blessings,> Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas>