Guest guest Posted December 23, 2009 Report Share Posted December 23, 2009 Hi Dave, Attached is the form you can fill out and mail to the Pulmonary Fibrosis Foundation, they are $3 each. I gave one to my not nice Respitory Therapist too. She was wearing a COPD bracelet. I wear mine every day, good conversation starter and identifier if I ever need help. My son wears his everyday too! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Wed, December 23, 2009 9:11:24 AMSubject: - bracelets ,How do you get bracelets?? Is there a web site I can order them from?Thanks and have a good holiday.Dave UIP/IPF / 43/ Miami>> Hi everyone,> > I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. > My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. > My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. > My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor!> I gave him a PFF brochure and a bracelet and he said he is going to make a donation! > > C_53_Familial IPF_5/09, Washington> HOPE doesn't disappoint!> Order Pulmonary Fibrosis Wrist Bands Minimum Contribution is $3.00 each* Name____________________________________ Address__________________________________ City_____________________ State_______ Zip__________ Phone________________ Email_________________________ Quantity_________________ Credit Card Purchase Type of Card_______________________ Expiration date_____________ Card Number_________________________________ Name of Card Holder_______________________________ Address__________________________________________ City__________________ State__________ Zip___________ Print Order form and send check or credit card information to: Pulmonary Fibrosis Foundation1332 N. Halsted ST. Suite 201Chicago, IL 60642 *For orders under five wrist bands add $5.00 for handling and shipping *For large quantity orders call: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2009 Report Share Posted December 24, 2009 Sorry , but there was no form attached... maybe you can resend thanks, dave > > > > Hi everyone, > > > > I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them.. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. > > My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. > > My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. > > My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor! > > I gave him a PFF brochure and a bracelet and he said he is going to make a donation! > >  > > C_53_Familial IPF_5/09, Washington > > HOPE doesn't disappoint! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Sorry 'bout that, let's try this again.... C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Thu, December 24, 2009 7:05:32 AMSubject: Re: - bracelets Sorry , but there was no form attached... maybe you can resendthanks, dave> >> > Hi everyone,> > > > I had my 3 month follow-up with my pulmo doc on Monday. My PFT was terrible, my DLCO dropped from 51% in Aug to 42%. I wasn't even able to complete the TLC part of the test at all. I just couldn't blow the air out without coughing and the RT made me try like 4 times! She wasn't very nice either, you'd think the test was all about them.. Like why do they get so upset if you can't do it. My doctor said not to worry about it. I have noticed since Dr. Raghu lowered my prednisone to 15mg in October that my breathlessness has increased because I have to keep turning up my O2. I was at 3 lpm for exertion and now I'm at 4 lpm. > > My 6-min walk was done with O2 on 3 lpm and on completion I was at 89%.So my pulmo doc and I decided to increase my prednisone to 20mg and see if I improve and I'll go back in a month for another PFT. He is starting me at 30mg for one week, then 25mg for a week and then the 20mg. I started the 30mg yesterday and already feel a difference. I might just be one of those that prednisone helps. > > My MCV blood count has been elevated for 2 months now. He said its probably due to the Azathioprine but ordered a Vitamin B-12 and Folate blood check. > > My doc said he talked to Dr. Raghu about the importance of me getting my weight down so I'll be eligible for the transplant (which I reallly want) and scheduled me to see a Dietician, saw her yesterday and she didn't tell me much that I already knew. But I am taking it much more serious now and am not making but one goodie for the kids this Christmas. They are young adults and are all on board with me too. My doc said he was going to be thinking of me at Christmas and eat less himself. I have such a wonderful doctor!> > I gave him a PFF brochure and a bracelet and he said he is going to make a donation! > >  > > C_53_Familial IPF_5/09, Washington> > HOPE doesn't disappoint!> >> 1 of 1 File(s) Bracelet Order Form.doc Quote Link to comment Share on other sites More sharing options...
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