Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Hello cap....are you the one w/PF? When dx (diagnosed) and how? Do you see a pulmonologist? If not do so ASAP and then get a second opinion! You will find out all the 'mechanics' you can tolerate right here on the board...many who are extremely knowledgeable and/or experienced with the symptoms and side effects. There is no time line. Peggy, one of our members, says, "There is no expiration date on our butts". PF does progress, other strains (over 200) do so but at different rates. Start out easy here. Tell us about yourself, where you live, married, kids? Most important when were you dx? I'm one of the older ones here...I'll be 70 in August. We have members in their 30s and all in between. Living all over the nation. I was dx 3-06 and have been fairly stable since. First w/IPF then dx changed in April to NSIP because I was remaining stable and IPF progresses. I am on O2 w/exertion and at night. You'll learn more as you go along. Can't absorb it all in one or two posts. come back and join in. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! New guy here Hello all, new to the group and hope to garner as much info as poss. re: pf. If any one can point me to some good info on the mechanics and time lines involved in the progression of pf I would appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Hi, I am new as well. I have RADS, ILD, fibro, MCS, Inflammatory Respiratory, TMJD, Mayo-facial, Herniated and collapsed dicks, and some others. Nice to here from you!!! dragonflymcs New guy here Hello all, new to the group and hope to garner as much info as poss. re: pf. If any one can point me to some good info on the mechanics and time lines involved in the progression of pf I would appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Sher; Thanks for the quick response. I'm a 64yr old male from Long Island NY. Tentative dx 11/07, after more tests ct and pft they seem to have been right back in Nov. I seem to be in an early stage as I'm still not in need of o2 and am able to live my normal routine. Just trying to get an idea about what to expect. The dr's don't paint a pretty picture nor does some of the material I've read. My wife and I are both retired and we enjoy traveling, plus we snow bird between here and Fla. so we are pretty much always on the move. Thanks again for your reply. cap Subject: Re: New guy hereTo: Breathe-Support Date: Saturday, May 17, 2008, 9:35 PM Hello cap....are you the one w/PF? When dx (diagnosed) and how? Do you see a pulmonologist? If not do so ASAP and then get a second opinion! You will find out all the 'mechanics' you can tolerate right here on the board...many who are extremely knowledgeable and/or experienced with the symptoms and side effects. There is no time line. Peggy, one of our members, says, "There is no expiration date on our butts". PF does progress, other strains (over 200) do so but at different rates. Start out easy here. Tell us about yourself, where you live, married, kids? Most important when were you dx? I'm one of the older ones here...I'll be 70 in August. We have members in their 30s and all in between. Living all over the nation. I was dx 3-06 and have been fairly stable since. First w/IPF then dx changed in April to NSIP because I was remaining stable and IPF progresses. I am on O2 w/exertion and at night. You'll learn more as you go along. Can't absorb it all in one or two posts. come back and join in. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! New guy here Hello all, new to the group and hope to garner as much info as poss. re: pf. If any one can point me to some good info on the mechanics and time lines involved in the progression of pf I would appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Hi , my name is Beth, I'm 48 and I live in Durham NC. Until last November though I lived in NY, Rockland County specifically, just a few miles up the Hudson from Manhattan. Not far from where you are on the island. I'm glad you found the group but as we always say we're sorry you had reason to look for us. I'm assuming that you've been told you have IPF. There are over 200 different forms of pulmonary fibrosis. I have NSIP diagnosed with multiple CT scans and an open lung biopsy in June of 06. Some forms of fibrosis progress faster than others, it's pretty impossible to predict the course of any one persons illness. There really aren't any easy answers or any reliable timelines. It does sound as though you've been diagnosed fairly early before you even have need for supplementary oxygen. That's great and you will hopefully remain stable for a long time to come. Make sure you're taking good care of yourself and getting excellent medical care. Have you been seen by someone at one of the university medical centers in NY? As much as you may like and respect your doctor locally, it's worth it to be evaluated by people who see alot of this type of lung disease. You may have already done this so if that's the case just ignore my 'mother hennishness'. Again, welcome aboard! I hope you find what you need here. You've stumbled onto a great group of folks! Beth Co-Moderator Breathe-Support Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive New guy here Hello all, new to the group and hope to garner as much info as poss. re: pf. If any one can point me to some good info on the mechanics and time lines involved in the progression of pf I would appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Here are some good site to check outhttp://findarticles.com/p/search?qt=pulmonary+fibrosis'>http://www.pulmonaryfibrosis.org/patient.pdfhttp://www.pulmonaryfibrosis.org/education.htmhttp://www.coalitionforpf.org/AboutUs/resources.asphttp://findarticles.com/p/search?qt=pulmonary+fibrosis & qf=all & qta=1 & tb=art & x=0 & y=0 good search enginehttp://findarticles.com/p/search?qt=pulmonary+fibrosis & qf=all & qta=1 & tb=art & x=0 & y=0http://www.medicinenet.com/pulmonary_fibrosis/index.htmhttp://www.medicinenet.com/antinuclear_antibody/article.htm everyone should have4 this test. Simple blood drawhttp://www.medicinenet.com/pulmonary_fibrosis/index.htmhttp://www.wrongdiagnosis.com/p/pulmonary_fibrosis/intro.htm This should keep you busy for a while P UIP 8/00 o2 8/04cap08634 wrote: Hello all, new to the group and hope to garner as much info as poss. re: pf. If any one can point me to some good info on the mechanics and time lines involved in the progression of pf I would appreciate it. P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 ...I know you and your wife (what is her name?) are thoroughly confused and full of anxiety. You are not going to die next week! Take some deep breaths and relax a bit...there are many of us here and answers are available. There are no silly questions! We are all in the same boat and we all row. You'll help us too with your own 'stuff'. Remember what I said about considering filing for disability. (I think it was you...we have a couple newbies). You'll no doubt get it. How fortunate you are to be able to travel back and forth. That doesn't necessarily have to stop and surely not RIGHT NOW! Bruce will be back in June and he is absolutely the greatest in giving full information to questions and symptoms. No , the picture is not a pretty one but your life can still be full of what you want to do for a long while. Be sure to start thinking about getting your affairs in order....not as in dying...but just as in organizing your thoughts and getting YOUR ideas of what to expect. What about your families....are they close by....how is your wife taking this all in? Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! New guy here Hello all, new to the group and hope to garner as much info as poss. re: pf. If any one can point me to some good info on the mechanics and time lines involved in the progression of pf I would appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Hi and all newbies, I am Joe Lamenskie and wife Joanie(support) and I was diagnosed in mid Jan. With IPF. I have found a lot of knowledge, support, and compassion with fellow inmates of this disease. As you will find out you will have good days and bad days, lots of ups and downs. Joanie has been a rock for me and when I was on Prednisone she tolerated a mad man and never wavered. It helps to have support and a good listener available at all times. I went for a total of 4 Dr.'s as I could not believe I could have this disease. I went to Emory in Atlanta (I live 50 minutes south) as my final place. I could not find any Dr. that would lie to me and make me feel better, so I accepted the diagnosis. As you will find out this disease affects all differently and meds do also have varying affects and results. Most find Prednisone helps and I found that I am better without it at this time. I cough a lot and take cough syrup with codeine and Benzonatate Caps. Of course I have the O2 and use a lot. I started Pulmonary rehab last week and they got excited when my BP jumped to 190/110 in 2 minutes when I started the treadmill. I had O2 on also so they scaled my exercise back quickly. Hope you find this site as helpful as Joanie and I have. If you are in Atlanta area try to look us up.     JOE/JOANIE JOE 60 IPF1/2008 GRIFFIN, GA. -- Re: New guy hereTo: Breathe-Support@ yahoogroups. comDate: Saturday, May 17, 2008, 9:35 PM Hello cap....are you the one w/PF? When dx (diagnosed) and how? Do you see a pulmonologist? If not do so ASAP and then get a second opinion! You will find out all the 'mechanics' you can tolerate right here on the board...many who are extremely knowledgeable and/or experienced with the symptoms and side effects. There is no time line. Peggy, one of our members, says, "There is no expiration date on our butts". PF does progress, other strains (over 200) do so but at different rates. Start out easy here. Tell us about yourself, where you live, married, kids? Most important when were you dx? I'm one of the older ones here...I'll be 70 in August. We have members in their 30s and all in between. Living all over the nation. I was dx 3-06 and have been fairly stable since. First w/IPF then dx changed in April to NSIP because I was remaining stable and IPF progresses. I am on O2 w/exertion and at night. You'll learn more as you go along. Can't absorb it all in one or two posts. come back and join in. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! New guy here Hello all, new to the group and hope to garner as much info as poss. re: pf. If any one can point me to some good info on the mechanics and time lines involved in the progression of pf I would appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Hi Joe and Joanie, As of right now I have very few symptoms and my Dr. is monitoring my numerous X-rays and CT scans. Wish you the best. G From: Sher Bauman <bofuswbcable (DOT) net>Subject: Re: New guy hereTo: Breathe-Support@ yahoogroups. comDate: Saturday, May 17, 2008, 9:35 PM Hello cap....are you the one w/PF? When dx (diagnosed) and how? Do you see a pulmonologist? If not do so ASAP and then get a second opinion! You will find out all the 'mechanics' you can tolerate right here on the board...many who are extremely knowledgeable and/or experienced with the symptoms and side effects. There is no time line. Peggy, one of our members, says, "There is no expiration date on our butts". PF does progress, other strains (over 200) do so but at different rates. Start out easy here. Tell us about yourself, where you live, married, kids? Most important when were you dx? I'm one of the older ones here...I'll be 70 in August. We have members in their 30s and all in between. Living all over the nation. I was dx 3-06 and have been fairly stable since. First w/IPF then dx changed in April to NSIP because I was remaining stable and IPF progresses. I am on O2 w/exertion and at night. You'll learn more as you go along. Can't absorb it all in one or two posts. come back and join in. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! New guy here Hello all, new to the group and hope to garner as much info as poss. re: pf. If any one can point me to some good info on the mechanics and time lines involved in the progression of pf I would appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Cap...do you prefer this or ''?... Use this time while you are fairly symptom free to look ahead and plan for what you may need to.......well,.....plan. I'm glad you are not joining us in a crisis situation. Did you say you have a definite diagnosis by a pulmonologist? Did you get a second opinion and what tests were given to diagnosis you? I ask because different strains progress differently............... Have a good week. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! New guy here Hello all, new to the group and hope to garner as much info as poss. re: pf. If any one can point me to some good info on the mechanics and time lines involved in the progression of pf I would appreciate it. Quote Link to comment Share on other sites More sharing options...
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