Glad to be back

[Guest guest]

Hi all,

OMG, I have missed you guys so much!! My PC has been down and I have

been unable to post. I have tons of emails to go through!! LOL!!

Well, I will give you all an update on my end of this disease --

My pulmo FINALLY came back into the country. I went to see him on

March 31. He told me the diagnosis, which I already knew was UIP. He

said, " Unfortunately, you have the worst one and there is no

medication to treat the disease. " (I already knew that, too.) Then

he said, I have rheumatoid arthritis, which I didn't know, and he

thinks that is what caused the UIP in the first place. He told me I

have to be on prednisone 30 mg a day for the rest of my life (unless

he increases it). He started me on Imuran 50 mg a day twice a day

forever, too. Then he said he wants me to take Os-Cal D twice a

day. Stay on the Advair 250/50, the Singulair 10 a day, the

albuterol inhaler p.r.n., the Xopenex nebs p.r.n., and the Rhinocort

Aqua daily. Then he said if I wanted to I could get a second opinion

because someone else may know something knew that he did not. I told

him he WAS my second opinion cuz my family doc had already told me I

had IPF but he didn't know which one. Also he told me that I have to

have a CBC and liver function tests every 4 weeks for the rest of my

life because the Imuran can make your white count drop drastically or

you liver can shut down. He said he wants to watch me very closely.

Finally, he decided on sending me to the University of Alabama in

Birmingham and the nurse called me today with an appointment for June

17. She said they will send me a welcome packet with more info on

what to do. Also, she said that I will have to have another PFT when

I get there before I see the doc and also ABGs, because even though I

had them in December, they want to get their own. Meanwhile, a week

ago my back went out again. I can tolerate it standing up, but when

I sit down, or lie down it is horrible. I can barely get in and out

of the car to go anywhere because I can't twist around. I still have

some Lorcet left from the lung biopsy so I have been taking those for

the back pain. Last time it went out in December 2006, they said I

had degenerative disk disease with osteoarthritis and sacroiliitis.

They sent me to physical therapy for 3 weeks. I found the sheet of

the back exercises they gave me and I have been trying to do them,

but it is so painful, I am not getting much done. This time, though,

the pain is not only in my back. It is radiating down my right leg

and every time I cough (which you all know is very often), it is like

knife-stabbing in my lower back and then shoots down my leg again. I

probably should go to the ER but I don't want to go. I have just

been sitting on a heating pad whenever I absolutely have to sit.

Even when I lie down in the bed, I can't even get comfortable. It

really sucks. Oh yeah, I almost forgot. I asked the pulmo, " So,

what am I looking at, a year maybe? " He couldn't really answer that.

He said it is bad, but the good thing is in December, I still had 68%

lung function. So I am still just taking it one day at a time.

I am really so sad to hear about . She will really be missed.

Caro