Re: Caro (under 50 w/ PF)

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Thanks Kerry, so much!! I wish you all the best, too. Wow symptoms before the age of 30!! I was thinking symptoms around the age of 40 was bad!! You have really got it hard I can imagine!! Do you have young children? Fortunately all of mine are grown and can fairly well take care of themselves and I feel good about that for whenever the inevitable happens (unless by some miracle I can get a lung transplant). It is good to know there are others with PH I can talk to. I don't really know a whole lot about it. The only thing I do know is that 95% of the time my heart feels like it is about to explode out of my chest even with the least bit of exertion. Feels like it is beating 90 mph!! Especially when I go to Pulmo Rehab and workout, it is even worse. From the way the doc described it, it

sounds really scary. Something else I will worry about even though I try not to. Thanks so much Kerry for the encouragement! Hope you have a great day!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Caro (under 50 w/ PF)To: Breathe-Support Date: Thursday, June 19, 2008, 10:56 AM

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.Kerry37 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> >>