Caro

[Guest guest]

Caro

It sounds like you had an excellent experience at Birmingham. I'm happy that you've gotten a good thorough evaluation. It does have a way of putting our mind at ease in my experience.

I was told the same thing by Dr. on at Duke regarding how rare it is to have almost any type of lung fibrosis that is idiopathic in a woman under 50. Almost all women our age and younger have some type of underlying autoimmune or connective tissue disease that caused the fibrosis. So you are unique! (Though I'm sure you'd rather have a different way of expressing your uniqueness right? LOL)

The heart disease that we all associate as 'going hand in hand' with PF is pulmonary hypertension. It is a common consequence of our illness and people who survive a long time with this disease almost all experience some amount of PH. It doesn't generally appear though until much later in the disease process. As the fibrosis advances and our lungs become less pliable, our hearts have to work much harder to get blood through our lungs which causes the pressures in the arteries and veins to rise.

It's not something I spend alot of time worrying about now. Just be aware of taking care of myself and having a echocardiogram regularly to make sure all is well. But I am further along in the process than you are. You're not even on O2 yet, you lucky duck!

I'm just happy the visit to Birmingham went well. Keep taking such good care of yourself!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 19, 2008, 7:50 AM

Caro,

Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> 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>