Birmingham

[Guest guest]

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