Guest guest Posted February 24, 2008 Report Share Posted February 24, 2008 Dick, Iam 58, I was diagnosed with IPf in 1997 but have been having symptoms since 1995, treated mainly with prednisone starting with 60 mg went trough many side effects mainly hyper tension and osteoporsis,iam on o2 24/7 , and on 10mg of prednisone, but stable , i get infecions frequently and have to take antibiotics and increase my dose to 15mg or 20mg , I take 2lit/min at rest and 3lit/min or during activity. this is to give hope to those who have been diagnosed recently, i would like Dilwala also to know that you should not take this 2yrs theory very seriously, take care Geeta( from India) ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 Geeta... I'm checking to see if you saw my reply to you when we discussed the "pain thing".....? I do hope you saw it. Please let me know. Mama-Sher, 69, IPF 3-06, OR.Don't fret about tomorrow, God is already there! Re: IPF Dick,Iam 58,I was diagnosed with IPf in 1997 but have been havingsymptoms since 1995, treated mainly with prednisonestarting with 60 mg went trough many side effects mainly hyper tension and osteoporsis,iam on o2 24/7 ,and on 10mg of prednisone, but stable , i get infecions frequently and have to take antibiotics andincrease my dose to 15mg or 20mg , I take 2lit/min atrest and 3lit/min or during activity.this is to give hope to those who have been diagnosedrecently, i would like Dilwala also to know that youshould not take this 2yrs theory very seriously,take careGeeta( from India)__________________________________________________________Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 Hi All, I live in India and my husband is diagnosed with ILD for the past 3 years.Since he has combined heart problem also- (he underwent bypass and but the grafts are again blocked)he has severe breathlessness and gasping inspite of supplemental oxygen almost for 20 hours a day.How could i improve the quality of his life?Any suggestions and advice from anybody? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 Dear Sher, yes, I saw your reply and thank you for the same, how are you ?I have been reading that you are adjusting to your o2 with considerable sucess, at least that is one thing that does us only good and has no side effects! love Geeta ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 Glad your VATS went well. Don't bet on pain being gone in month but it might. Either way you came through in flying colors. As to living normally. As much as possible but always making sure oxygen is over 90% in anything you do. Less than that will destroy your other organs, especially your heart. So normally, but protect yourself and live as long as possible. The one other thing is germs. Avoid them as much as possible, keep hand sterilizer and sterile wipes. Also, make sure you've had pneumonia and flu vaccines. But understand the flu that you previously just waited out or the cold can be more dangerous now. You're going to do great with it. Treat it with respect but don't surrender to it. > > > > Dick, > > Iam 58, > > > > > > I was diagnosed with IPf in 1997 but have been having > > symptoms since 1995, treated mainly with prednisone > > starting with 60 mg went trough many side effects > > mainly hyper tension and osteoporsis,iam on o2 24/7 , > > and on 10mg of prednisone, but stable , i get > > infecions frequently and have to take antibiotics and > > increase my dose to 15mg or 20mg , I take 2lit/min at > > rest and 3lit/min or during activity. > > this is to give hope to those who have been diagnosed > > recently, i would like Dilwala also to know that you > > should not take this 2yrs theory very seriously, > > take care > > Geeta( from India) > > > > > > > _____________________________________________________________________ > _______________ > > Be a better friend, newshound, and > > know-it-all with Yahoo! Mobile. Try it now. > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Dilwala... good to hear from you. I'm amazed at you fixing your fence! But no sob so you did good work. Sounds like your life is indeed busy. I pray your life stays normal for you and your family. Is your wife adjusting a bit to this news? I know God will watch over you and yours Dilwala. Mama-Sher, age 69. UIP (IPF?) 3-06, OR.Don't fret about tomorrow, God is already there! Re: IPF Thanks Geeta, I will think of you whenever I hit the monsoon. It would certainly lift me out of it.Only remaining affect from the VATS is what my surgeon categorized as phantom pain. It is not really pain but very uncomfortable feeling on my right side, from top of the rib cage to the bottom of the rib cage. He said that it will go away in approximately one month. It is limiting my movement somewhat. We had rain/high winds over the weekend. I lost a small part of the fence; ~12 feet. It was on the road side and would have allowed anyone to walk into my yard. After returning from visiting the surgeon on Monday, I called a few places to get the fence fixed. It did not need any new wood; simply erect and nail the existing boards. The cheapest estimate was $500. It angered me so much that I went at it myself. It took me about two hours. I had a little sweat going and my phantom pain was a bit worsening but no shortness of breath. Today, I held a basketball practice for the 7th grade All-Net team. Practice lasted for two hours. I did my usual yelling and screaming (short but loud) and did get involved in guarding (only stepping in the way) on a few plays. Again, no shortness of breath. I will be attending Baseball tryouts for 13-14 yr's old on Saturday, followed by a balk class (If you know Baseball you know what balk is). Thus, from 8 – 4 p.m. on Saturday I will be on a baseball field. If Saturday goes well then I'm ready to return to work on Monday and face this thing head on. I'm not sure what lies ahead or how things will go from here on out, but I will not let this dampen my style. I will follow up with the folks at UCSF. I will follow their directions and treatment plans as they appear to be THE authority on PF. What I have gathered so far on PF tells me to live normally. I will update when I have news. I will likely not be an active participant on the site as work, kids' home work, very young and beautiful and demanding wife, son's sports, and his twin sister's academic activities will keep me plenty busy. Please feel free to send me an individual email and I will respond accordingly. This site is much needed. It taught me not to distraught but to focus on life. It educated me beyond what any clinical trial paper ever could have. I applaud all of you and I wish and pray for a speedy cure for this illness.Dilwala, 47, UIP, 2/2008, Northern California>> Dick,> Iam 58,> > > I was diagnosed with IPf in 1997 but have been having> symptoms since 1995, treated mainly with prednisone> starting with 60 mg went trough many side effects > mainly hyper tension and osteoporsis,iam on o2 24/7 ,> and on 10mg of prednisone, but stable , i get > infecions frequently and have to take antibiotics and> increase my dose to 15mg or 20mg , I take 2lit/min at> rest and 3lit/min or during activity.> this is to give hope to those who have been diagnosed> recently, i would like Dilwala also to know that you> should not take this 2yrs theory very seriously,> take care> Geeta( from India)> > > _________________________________________________________________________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Hema....I want to acknowledge I read your post but unfortunately, I can't help with advice on O2...I'm still learning myself. We have another member: Geeta. She is also in India. I'm sorry your family is going through this worry. Mama-Sher, age 69. UIP (IPF?) 3-06, OR.Don't fret about tomorrow, God is already there! Re: IPF Hi "hema" Have you talked to his Dr. about keeping him on oxygen 24/7 ? I really can't help you other that oxygen is all I could recommend. I'll pray for strength and peace for you and your family through this rough time. Love and Prayers, Peggy>> Hi All,> I live in India and my husband is diagnosed with ILD for the past 3> years.Since he has combined heart problem also- (he underwent bypass> and but the grafts are again blocked)he has severe breathlessness and> gasping inspite of supplemental oxygen almost for 20 hours a day.How> could i improve the quality of his life?Any suggestions and advice> from anybody?> > Thank you> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Hema, Thanks for coming here to our group. I think you are wonderful for searching for ways to help your husband. Do you have an oximeter? Being able to measure his saturations to see if he is indeed getting the correct amount of oxygen from his source would be a great help. Have him pace his movements very slowly. That is so hard for me because I have hurried all my life. Another thing that makes me uncomfortable is being "closed up".....in a room with the doors closed, no air flow. There has to be moving air or I just smother. Having heart and lung disease combined makes the shortness of breath so much worse. I hope that you can find ways to help. Hugs, Joyce D. Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 I will not forget you...Behold, I have engraved you on the palms of my hands. Isaiah 49:15-16 >> Hi All,> I live in India and my husband is diagnosed with ILD for the past 3> years.Since he has combined heart problem also- (he underwent bypass> and but the grafts are again blocked)he has severe breathlessness and> gasping inspite of supplemental oxygen almost for 20 hours a day.How> could i improve the quality of his life?Any suggestions and advice> from anybody?> > Thank you> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Dear Hema , iam from mumbai and have ILD since 13 yrs and am being treated at Hinduja, u can contact me on phone 27820740, we live in vashi navi mumbai, i will be glad to exchage my experiences with you, iam on 02 24/7 Geeta ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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