Caro (under 50 w/ PF)

[Guest guest]

Caro,

Back when I was diagnosed my pulmonologist presented my case at a

national conference. Remember I was 30 when diagnosed and we

remember symptoms back to when I was 28. 37 now. No other co

factors except the bronchiectasis that has become this monster's

partner in harrassing me. Any other things we've tried to treat to

help w/ cough, irritation and mucous, nasal drip are all just shots

in the dark that I may or may not have and are marginal at best

(taking Allegra for possible allergies and Prevacid for questionable

GERD/hiatal hernia). The osteopenia is probably from me cutting

down on diary to lessen mucous and lessened exercise due to

coughing, O2 issues (so actually from the PF if you look at it that

way) and that I'm high risk (for Osteoporosis) just being a very

small white female. Most things you read say found mostly in people

over 60, but other's say 40 or 50, we seem to have more and more

young people on this site. This board started out w/ as it's

only real baby, then she went and jumped out of our diagnosis pool.

(, (or Peggy or Wally or anyone in touch w/ ) I'd love to

hear a real update on you and your latest treatment by the way).

Now, I'd say there are more on the under 50 side than over. And

Caro, you can certainly talk to many on here about PH, Joyce,

Tina... and so on. That's probably your biggest immediate concern.

I wish you the best with your continued testing.

Kerry

37 IPF '01 S. IN

> >

> > Hi All,

> >

> > Sorry I haven't posted in a few days again, but I am back from

> > Birmingham. Still don't know anything definite other than the

> > diagnosis I already have of UIP. First when I got there, they

did

> > ABGs (OMG!! It hurt so bad!! I had it done once before and I

didn't

> > even feel it, but not this time. She had to pry (her words)).

Then

> > I had to do PFTs, which showed 57% lung function, compared to

the 68%

> > I had in December. Next, I visited with the doc. Actually there

> > were 2 docs. The first one was a fellow of Dr. de Andrade (who

was

> > the Assistant Professor). His name was Dr. , very nice

guy.

> > He took down all my history and said he thinks I may have

pulmonary

> > hypertension (which would explain the rapid heart rate). He did

exam

> > and then goes to discuss with Dr. de Andrade, who comes back in

and

> > again, very nice guy. He explains that it is very rare in a

woman

> > under the age of 50 to have pulmonary fibrosis and since I have

been

> > sick for 6 years already, even more rare, not unheard of, just

rare.

> > So I am a model case!! Anyhoo, due to this fact that I AM so

rare,

> > he thinks there is an underlying disease causing the PF, so I

get

> > blood work (10 tubes of blood) for various autoimmune diseases.

He

> > is leaning towards Sjogren's or scleroderma (mostly scleroderma

for

> > which also there is no cure). Dr. did a heart exam and

looked

> > at the veins in my neck before talking to Dr. de Andrade who

decided

> > I needed another chest CT (my last one was in February 2008), so

I

> > had that done (without contrast thank God!!) and also that I

needed

> > an ultrasound of my heart to check for blood flow to the heart

and

> > for any blockages to the valves. All in all, he said if I don't

hear

> > from them in a week, to call them to get the results. Other than

> > that, he didn't change any of my medications, except to decrease

the

> > prednisone even further to 10 mg a day. He said he wants me to

get

> > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I

> > told him I had gained 20 pounds since being on them starting in

> > January, and told him I have moon faces and he agreed. He said

they

> > want me lean and healthy and I did not need to be on that for

sure.

> > Any weight gain is out of the question, he said. He told me I

have

> > to keep moving. He told me to eat lean proteins, fruits, and

veggies

> > and no snacks. He PROMISED me the weight will come off. He said

he

> > expects me to lose 10 pounds rather quickly. I sure hope he is

> > right, because I am miserable and I told him so, too!! He said

there

> > are no real medications to treat PF, and I knew that, but he

said

> > when I come back, I can decide either to go with the Imuran and

N-

> > Acetyl-Cysteine (NAC), which is all the best they know at this

point

> > to give patients with PF, or I can try an experimental drug

(clinical

> > trial), which I don't know what the side effects will be, but I

am

> > kinda leaning towards doing anyway, because I feel like even if

it

> > doesn't help me, it may help some other person with this stupid

> > disease on down the road and it would be worth it. As for lung

> > transplant, I don't yet qualify because my sats are not low

enough

> > and I am not on oxygen yet. Note that I said " YET. " He said the

key

> > to prolonging oxygen use as long as possible is to stay as

active and

> > healthy as possible and that is what I am going to try and do.

> > (my grandson) is here with me this summer, and he really

> > helps to keep me motivated and I think I need that right now.

Also

> > the docs were really glad to know that I am in pulmonary rehab

and

> > that I am going to stay in the Wellness Program when I get done

with

> > the rehab program. All in all, even though I did get some not so

> > good news, I feel like I got some good news, also, so until next

week

> > or whenever I get the results, I am just trying to keep my self

in

> > exercise and health mode the best I can and keep going.

> >

> > So that was my Birmingham visit. My parents went with me and we

> > really had a nice trip. I don't know what I would do without

them.

> > They have been my rock through all of this. Thank God for my

Mama

> > and Daddy!!

> >

> > I hope you all have a great week and now that I am back I hope

to be

> > able to keep up with posts better and write more than I have

been. I

> > do reads all the posts and think of each and every one of you

> > everyday. You are my air family and you are my rock, as well.

Don't

> > know what I would do without you guys, either!! I love you all!!

> >

> > Have a great day!!

> >

> > Caro

> >

>