Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 you're getting through now richard. thanks for joining us. i wish i could say it was for a different reason but it seems this is how the cookie crumbles for us. in a way i think of it as a small blessing. without the PF i never would have met this wonderful group of people. and believe me, they are all the light at the end of the tunnel sometimes. always there when you need them, and even when ya don't. jaime PF 10-05 age 30 > > Hi, I'm .Diagnosed with IPF June 06.I have made a few attempts > to communicate on this on-line service,but can't seem to get thru. Any > suggestions???? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Hello ...I'm reading your post. What trouble are you having? I had a heck of a time trying to figure everything out but finally I did and I'm glad I stuck with it. This group is so caring and most of all honest. Welcome and keep coming back, Sher ipf 5-06 IPF Hi, I'm .Diagnosed with IPF June 06.I have made a few attemptsto communicate on this on-line service,but can't seem to get thru. Anysuggestions???? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Sher, I think the problem was that I hadn't gone on the site to approve him. We were having some storms so I had to shut down. But I think he's up and running now. My son-in-love is south of Salem ??? My daughter is as good with memory as I am.. OOPS.. He is inspecting covered bridges.. Peggy 09/04 ipf > Hello ...I'm reading your post. What trouble are you having? I had a > heck of a time trying to figure everything out but finally I did and I'm glad > I stuck with it. This group is so caring and most of all honest. Welcome and > keep coming back, Sher ipf 5-06 > IPF > > > Hi, I'm .Diagnosed with IPF June 06.I have made a few attempts > to communicate on this on-line service,but can't seem to get thru. Any > suggestions???? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Hello Everyone.I'm glad I made thru. I've been reading alot of the messages an wonder how you all do it. I started with a small cough about a year ago,which progressivly got worse an more annouying(sp?). I went to the doctors, an each time was told it's probabley(sp?) allergies. I was given an Albuterol Inhaler.After six months, I asked for a chest xray,which was clear. One the next visit I was lucky enough to get a Resident who was aggressive an went to the attending with my history. You see, I was a runner all my life until now. The attending sent me for a high res.CT Scan which showed honey combing in the bases of my lungs. a week later I went to Pulm. for a PFT which revealed a 40% loss in total lung capacity! 2 weeks later I went to the Pulmonologist an was Diagnosed with IPF. 2 weeks after that I was scheduled for a V.A.T. the cultures were neg. The Pulm.Dr. has sent the cultures to Hopkins for a second opinion. In the mean time I sit here on no other meds than the inhaler. The Pulm.Dr. feels that Prednisone would be ineffectinve ,"an that while I'm healthy", I should start thinking about a Lung Transplant.WOW in about 6 weeks , I went from a cough to wether I want a Lung TX or not? How do you all handle it? I'm handling it on a day by day status. Any suggestions?? An THANK YOU an GOD BLESS YOU ALL!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Ric, Isn't it amazing how your whole world can be turned upside down in the space of a few days? I was just diagnosed with IPF last month. I had had a increasingly annoying cough over the last year or so which was attributed at various times to allergies, bronchitis etc. I got very sick this past Memorial Day, my color was bad, I was very short of breath and my lower legs had begun to swell up. I was at a barbecue at my sisters house and she called 911 for me. When the paramedics arrived my oxygen sats were in the low 60's. Long story short, I was in the hospital for 2 weeks, had an open lung biopsy with a positive diagnosis of IPF. Now we're trying to get some etiology and possibly a differential diagnosis to facilitate treatment. In the meantime, I am on prednisone for the last nearly 2 months without difficulty. I seem to be one of the lucky ones. Some aspects of my pulmonary function are improving a little bit so the doctors think the prednisone may be helping. I'll take any improvement I can get. My lung capacity is currently at about 43% and I'm 47 years old. Get lots of opinions and ask lots of questions. Ask if pulmonary rehab is appropriate. I'm going to a great program at a local rehab program and it's the best thing I've done since my diagnosis. I only just found this group a couple of weeks ago. There is lots of kindness and support and I'm grateful to have stumbled across this group!! First and foremost look after yourself. Life has changed completely but it's still precious!! m wrote: Hello Everyone.I'm glad I made thru. I've been reading alot of the messages an wonder how you all do it. I started with a small cough about a year ago,which progressivly got worse an more annouying(sp?). I went to the doctors, an each time was told it's probabley(sp?) allergies. I was given an Albuterol Inhaler.After six months, I asked for a chest xray,which was clear. One the next visit I was lucky enough to get a Resident who was aggressive an went to the attending with my history. You see, I was a runner all my life until now. The attending sent me for a high res.CT Scan which showed honey combing in the bases of my lungs. a week later I went to Pulm. for a PFT which revealed a 40% loss in total lung capacity! 2 weeks later I went to the Pulmonologist an was Diagnosed with IPF. 2 weeks after that I was scheduled for a V.A.T. the cultures were neg. The Pulm.Dr. has sent the cultures to Hopkins for a second opinion. In the mean time I sit here on no other meds than the inhaler. The Pulm.Dr. feels that Prednisone would be ineffectinve ,"an that while I'm healthy", I should start thinking about a Lung Transplant.WOW in about 6 weeks , I went from a cough to wether I want a Lung TX or not? How do you all handle it? I'm handling it on a day by day status. Any suggestions?? An THANK YOU an GOD BLESS YOU ALL!! BethDraw close. Hold hands. Life is short. God is good. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 HI Everyone, I have learned so much from all of you. Your group is amazing. I am trying to get my dad to join...but he is "scared" of the computer. :-) I was wondering if you are already on oxygen can you be in pulmonary rehabiliatation. I am writing down all sorts of questions to ask my dad's doctor next week, and want to get all my ducks in a row. Thanks, Cyndi (Dad IPF 12/-05) Beth Murtha wrote: Ric, Isn't it amazing how your whole world can be turned upside down in the space of a few days? I was just diagnosed with IPF last month. I had had a increasingly annoying cough over the last year or so which was attributed at various times to allergies, bronchitis etc. I got very sick this past Memorial Day, my color was bad, I was very short of breath and my lower legs had begun to swell up. I was at a barbecue at my sisters house and she called 911 for me. When the paramedics arrived my oxygen sats were in the low 60's. Long story short, I was in the hospital for 2 weeks, had an open lung biopsy with a positive diagnosis of IPF. Now we're trying to get some etiology and possibly a differential diagnosis to facilitate treatment. In the meantime, I am on prednisone for the last nearly 2 months without difficulty. I seem to be one of the lucky ones. Some aspects of my pulmonary function are improving a little bit so the doctors think the prednisone may be helping. I'll take any improvement I can get. My lung capacity is currently at about 43% and I'm 47 years old. Get lots of opinions and ask lots of questions. Ask if pulmonary rehab is appropriate. I'm going to a great program at a local rehab program and it's the best thing I've done since my diagnosis. I only just found this group a couple of weeks ago. There is lots of kindness and support and I'm grateful to have stumbled across this group!! First and foremost look after yourself. Life has changed completely but it's still precious!! m <jric55> wrote: Hello Everyone.I'm glad I made thru. I've been reading alot of the messages an wonder how you all do it. I started with a small cough about a year ago,which progressivly got worse an more annouying(sp?). I went to the doctors, an each time was told it's probabley(sp?) allergies. I was given an Albuterol Inhaler.After six months, I asked for a chest xray,which was clear. One the next visit I was lucky enough to get a Resident who was aggressive an went to the attending with my history. You see, I was a runner all my life until now. The attending sent me for a high res.CT Scan which showed honey combing in the bases of my lungs. a week later I went to Pulm. for a PFT which revealed a 40% loss in total lung capacity! 2 weeks later I went to the Pulmonologist an was Diagnosed with IPF. 2 weeks after that I was scheduled for a V.A.T. the cultures were neg. The Pulm.Dr. has sent the cultures to Hopkins for a second opinion. In the mean time I sit here on no other meds than the inhaler. The Pulm.Dr. feels that Prednisone would be ineffectinve ,"an that while I'm healthy", I should start thinking about a Lung Transplant.WOW in about 6 weeks , I went from a cough to wether I want a Lung TX or not? How do you all handle it? I'm handling it on a day by day status. Any suggestions?? An THANK YOU an GOD BLESS YOU ALL!! BethDraw close. Hold hands. Life is short. God is good. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Hi Cyndi, Yes you can, I took mine with me and when you get there they give you a tank to use. I do everything with my O2. Showering is so much easier. I put it up almost to 4 L. If we can help in any way don't hesitate. Tell your dad hello from the back of the boat. LOL Peggy 09/04 ipf > HI Everyone, > I have learned so much from all of you. Your group is amazing. I am trying > to get my dad to join...but he is " scared " of the computer. :-) I was > wondering if you are already on oxygen can you be in pulmonary > rehabiliatation. I am writing down all sorts of questions to ask my dad's > doctor next week, and want to get all my ducks in a row. > Thanks, > Cyndi (Dad IPF 12/-05) > > Beth Murtha wrote: > Ric, > Isn't it amazing how your whole world can be turned upside down in the space > of a few days? I was just diagnosed with IPF last month. I had had a > increasingly annoying cough over the last year or so which was attributed at > various times to allergies, bronchitis etc. I got very sick this past > Memorial Day, my color was bad, I was very short of breath and my lower legs > had begun to swell up. I was at a barbecue at my sisters house and she called > 911 for me. When the paramedics arrived my oxygen sats were in the low 60's. > Long story short, I was in the hospital for 2 weeks, had an open lung biopsy > with a positive diagnosis of IPF. Now we're trying to get some etiology and > possibly a differential diagnosis to facilitate treatment. > > In the meantime, I am on prednisone for the last nearly 2 months without > difficulty. I seem to be one of the lucky ones. Some aspects of my pulmonary > function are improving a little bit so the doctors think the prednisone may be > helping. I'll take any improvement I can get. My lung capacity is currently > at about 43% and I'm 47 years old. > > Get lots of opinions and ask lots of questions. Ask if pulmonary rehab is > appropriate. I'm going to a great program at a local rehab program and it's > the best thing I've done since my diagnosis. > > I only just found this group a couple of weeks ago. There is lots of kindness > and support and I'm grateful to have stumbled across this group!! > > First and foremost look after yourself. Life has changed completely but it's > still precious!! > > > > > > > m wrote: > Hello Everyone.I'm glad I made thru. I've been reading alot of the messages an > wonder how you all do it. I started with a small cough about a year ago,which > progressivly got worse an more annouying(sp?). I went to the doctors, an each > time was told it's probabley(sp?) allergies. I was given an Albuterol > Inhaler.After six months, I asked for a chest xray,which was clear. One the > next visit I was lucky enough to get a Resident who was aggressive an went to > the attending with my history. You see, I was a runner all my life until now. > The attending sent me for a high res.CT Scan which showed honey combing in the > bases of my lungs. a week later I went to Pulm. for a PFT which revealed a 40% > loss in total lung capacity! 2 weeks later I went to the Pulmonologist an was > Diagnosed with IPF. 2 weeks after that I was scheduled for a V.A.T. the > cultures were neg. The Pulm.Dr. has sent the cultures to Hopkins for a > second opinion. In the mean time I sit here on no other > meds than the inhaler. The Pulm.Dr. feels that Prednisone would be > ineffectinve , " an that while I'm healthy " , I should start thinking about a > Lung Transplant.WOW in about 6 weeks , I went from a cough to wether I want a > Lung TX or not? How do you all handle it? I'm handling it on a day by day > status. Any suggestions?? An THANK YOU an GOD BLESS YOU ALL!! > > > > > > Beth > > Draw close. Hold hands. Life is short. God is good. > > > > --------------------------------- > Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates > starting at 1¢/min. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Hi I was diagnosed with IPF March 2006. I still find this on-line service confusing. But I am getting better at it. Just keep reading what interests you. Respond when something strikes you. Or pose a question, and see if people respond to you. Joyce IPF 3/06 > > Hi, I'm .Diagnosed with IPF June 06.I have made a few attempts > to communicate on this on-line service,but can't seem to get thru. Any > suggestions???? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Joyce & , If you'll put Breath-Support in your address book you can start a post from that.. OR just click reply when reading a post here.. OK?? Alrighty then.. LOL God Bless... Peggy 09/04 ipf > Hi > I was diagnosed with IPF March 2006. I still find this on-line service > confusing. But I am getting better at it. Just keep reading what > interests you. Respond when something strikes you. Or pose a > question, and see if people respond to you. > Joyce IPF 3/06 > > >> >> Hi, I'm .Diagnosed with IPF June 06.I have made a few attempts >> to communicate on this on-line service,but can't seem to get thru. Any >> suggestions???? >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Hi Ric Jim We all do it with some difficulty, and with support from family, friends and each other. When I was diagnosed march 2006, i was told by the pulmonary doc that there was nothing he could do for me. He wrote a script for a cough med, but didn't really think it would do anything. Suggested going to Penn or Temple where they specialize in interstitial lung diseases. I left his office that day feeling very disappointed. I really expected that once we got the diagnosis, he would prescribe something that would relieve the symptoms. so I called Penn and arranged to see the first available doc. At the first consult, he told me the worst case scenerios first. It really scared the you know what out of me. He requested another High Resolution Cat scan to be done at Penn, because the one done at the local hospital didn't show what he was looking for. fortunately, the one at penn didn't show it either, but he said it was a better scan. He put me on 10mg prednisone and that has really made a difference for me. Less coughing, less SOB, less tired. It relieves the symptoms, but the disease is still there. Also recommended contacting transplant team, just in case I need it down the road. Two weeks ago, I went for the 3 day evaluation. Still waiting for the results. While there met several people who recently had lung transplants. At that time they all appeared to be very happy with the transplants. They didn't need O2 anymore, etc. I went into denial about this disease. When discussing it, it was academic. Like we were talking about someone else's body, not mine. In fact, even though i know that i have this horrible disease, I don't feel that sick. the doc at penn also sent me to pulmonary rehab. Keeping your body in good condition enables you to need less O2. this was explained to me but it is still a tough concept for me to grasp. At any rate, i am sorry that you have this disease, but glad you found this supportive site. Joyce IPF 3/06 > > Hello Everyone.I'm glad I made thru. I've been reading alot of the messages an wonder how you all do it. I started with a small cough about a year ago,which progressivly got worse an more annouying(sp?). I went to the doctors, an each time was told it's probabley(sp?) allergies. I was given an Albuterol Inhaler.After six months, I asked for a chest xray,which was clear. One the next visit I was lucky enough to get a Resident who was aggressive an went to the attending with my history. You see, I was a runner all my life until now. The attending sent me for a high res.CT Scan which showed honey combing in the bases of my lungs. a week later I went to Pulm. for a PFT which revealed a 40% loss in total lung capacity! 2 weeks later I went to the Pulmonologist an was Diagnosed with IPF. 2 weeks after that I was scheduled for a V.A.T. the cultures were neg. The Pulm.Dr. has sent the cultures to Hopkins for a second opinion. In the mean time I sit here on no other meds than > the inhaler. The Pulm.Dr. feels that Prednisone would be ineffectinve , " an that while I'm healthy " , I should start thinking about a Lung Transplant.WOW in about 6 weeks , I went from a cough to wether I want a Lung TX or not? How do you all handle it? I'm handling it on a day by day status. Any suggestions?? An THANK YOU an GOD BLESS YOU ALL!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 No problem to be on O2 at rehab. I use the hospitals o2 tanks and crank them up highter than mine. On 02 24/7 4 LPM at home P UIP 8/00 58 yrs old wrote: HI Everyone, I have learned so much from all of you. Your group is amazing. I am trying to get my dad to join...but he is "scared" of the computer. :-) I was wondering if you are already on oxygen can you be in pulmonary rehabiliatation. I am writing down all sorts of questions to ask my dad's doctor next week, and want to get all my ducks in a row. Thanks, Cyndi (Dad IPF 12/-05) Beth Murtha <mbmurtha> wrote: Ric, Isn't it amazing how your whole world can be turned upside down in the space of a few days? I was just diagnosed with IPF last month. I had had a increasingly annoying cough over the last year or so which was attributed at various times to allergies, bronchitis etc. I got very sick this past Memorial Day, my color was bad, I was very short of breath and my lower legs had begun to swell up. I was at a barbecue at my sisters house and she called 911 for me. When the paramedics arrived my oxygen sats were in the low 60's. Long story short, I was in the hospital for 2 weeks, had an open lung biopsy with a positive diagnosis of IPF. Now we're trying to get some etiology and possibly a differential diagnosis to facilitate treatment. In the meantime, I am on prednisone for the last nearly 2 months without difficulty. I seem to be one of the lucky ones. Some aspects of my pulmonary function are improving a little bit so the doctors think the prednisone may be helping. I'll take any improvement I can get. My lung capacity is currently at about 43% and I'm 47 years old. Get lots of opinions and ask lots of questions. Ask if pulmonary rehab is appropriate. I'm going to a great program at a local rehab program and it's the best thing I've done since my diagnosis. I only just found this group a couple of weeks ago. There is lots of kindness and support and I'm grateful to have stumbled across this group!! First and foremost look after yourself. Life has changed completely but it's still precious!! m <jric55> wrote: Hello Everyone.I'm glad I made thru. I've been reading alot of the messages an wonder how you all do it. I started with a small cough about a year ago,which progressivly got worse an more annouying(sp?). I went to the doctors, an each time was told it's probabley(sp?) allergies. I was given an Albuterol Inhaler.After six months, I asked for a chest xray,which was clear. One the next visit I was lucky enough to get a Resident who was aggressive an went to the attending with my history. You see, I was a runner all my life until now. The attending sent me for a high res.CT Scan which showed honey combing in the bases of my lungs. a week later I went to Pulm. for a PFT which revealed a 40% loss in total lung capacity! 2 weeks later I went to the Pulmonologist an was Diagnosed with IPF. 2 weeks after that I was scheduled for a V.A.T. the cultures were neg. The Pulm.Dr. has sent the cultures to Hopkins for a second opinion. In the mean time I sit here on no other meds than the inhaler. The Pulm.Dr. feels that Prednisone would be ineffectinve ,"an that while I'm healthy", I should start thinking about a Lung Transplant.WOW in about 6 weeks , I went from a cough to wether I want a Lung TX or not? How do you all handle it? I'm handling it on a day by day status. Any suggestions?? An THANK YOU an GOD BLESS YOU ALL!! BethDraw close. Hold hands. Life is short. God is good. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Hi Joyce, Have you had any kind of biopsy, or a hypersensitivity blood panel done yet.I can't remember if you have or not.If not, make sure the ones at Penn do these, for it will give you a lot more information.God watch over you and everyone on this board. HP 6/06pinkrockybeach wrote: Hi Ric JimWe all do it with some difficulty, and with support from family, friends and each other. When I was diagnosed march 2006, i was told by the pulmonary doc that there was nothing he could do for me. He wrote a script for a cough med, but didn't really think it would do anything. Suggested going to Penn or Temple where they specialize in interstitial lung diseases. I left his office that day feeling very disappointed. I really expected that once we got the diagnosis, he would prescribe something that would relieve the symptoms. so I called Penn and arranged to see the first available doc. At the first consult, he told me the worst case scenerios first. It really scared the you know what out of me. He requested another High Resolution Cat scan to be done at Penn, because the one done at the local hospital didn't show what he was looking for. fortunately, the one at penn didn't show it either, but he said it was a better scan. He put me on 10mg prednisone and that has really made a difference for me. Less coughing, less SOB, less tired. It relieves the symptoms, but the disease is still there. Also recommended contacting transplant team, just in case I need it down the road. Two weeks ago, I went for the 3 day evaluation. Still waiting for the results. While there met several people who recently had lung transplants. At that time they all appeared to be very happy with the transplants. They didn't need O2 anymore, etc. I went into denial about this disease. When discussing it, it was academic. Like we were talking about someone else's body, not mine. In fact, even though i know that i have this horrible disease, I don't feel that sick. the doc at penn also sent me to pulmonary rehab. Keeping your body in good condition enables you to need less O2. this was explained to me but it is still a tough concept for me to grasp. At any rate, i am sorry that you have this disease, but glad you found this supportive site.Joyce IPF 3/06>> Hello Everyone.I'm glad I made thru. I've been reading alot of the messages an wonder how you all do it. I started with a small cough about a year ago,which progressivly got worse an more annouying(sp?). I went to the doctors, an each time was told it's probabley(sp?) allergies. I was given an Albuterol Inhaler.After six months, I asked for a chest xray,which was clear. One the next visit I was lucky enough to get a Resident who was aggressive an went to the attending with my history. You see, I was a runner all my life until now. The attending sent me for a high res.CT Scan which showed honey combing in the bases of my lungs. a week later I went to Pulm. for a PFT which revealed a 40% loss in total lung capacity! 2 weeks later I went to the Pulmonologist an was Diagnosed with IPF. 2 weeks after that I was scheduled for a V.A.T. the cultures were neg. The Pulm.Dr. has sent the cultures to Hopkins for a second opinion. In the mean time I sit here on no other meds than> the inhaler. The Pulm.Dr. feels that Prednisone would be ineffectinve ,"an that while I'm healthy", I should start thinking about a Lung Transplant.WOW in about 6 weeks , I went from a cough to wether I want a Lung TX or not? How do you all handle it? I'm handling it on a day by day status. Any suggestions?? An THANK YOU an GOD BLESS YOU ALL!!> How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 Hey , I too was a runner ,I started with a clear ing of the throat to a cough , to spitting up gelly substance it took 4 years to get the docters to listen to me but thank goodness I went for a second appion at u of m my diffsion is 49 and I am 47 years old I have been going to rehab since Jan walking anywhere from 1-8 miles out side yoga lots of lower abdomine breathing it just depends if its a good day or not I take all natural suppliments except one puff of flovent in the morning when weather changes quickly. doris nsip pf scleroderma 05Sher K Bauman wrote: Hello ...I'm reading your post. What trouble are you having? I had a heck of a time trying to figure everything out but finally I did and I'm glad I stuck with it. This group is so caring and most of all honest. Welcome and keep coming back, Sher ipf 5-06 IPF Hi, I'm .Diagnosed with IPF June 06.I have made a few attemptsto communicate on this on-line service,but can't seem to get thru. Anysuggestions???? Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 i take both actimmune and prednisone so yes you can definitely take them both. jaime > > > HI, > Can you be on acctimmune if you were already on predisone? Just wondering...I appreciate all of your help and advice. You are all wonderful and positive and in my prayers. > Cyndi (dad IPF 12/05) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2006 Report Share Posted September 24, 2006 Don't believe in the numbers. We are all effected in different ways and at different times. Some of us believe that the 3-5 time clock doesn't start till the o2 hose goes up your nose for 24/7. I was diagnosed by lung biopsy 8/00 and started O2 24/7 8/04and diagnosed with PH 6/06. I am not eligible for a lung TX as I also have Polymyositis 12/98. I am still kicking just not as high. P 58 yr old joynoel3208 wrote: You know how you always hear the est. life expectancy is 3-5 years. I'm wondering if anyone has a reply to that. And, are most people now electing to get a lung transplant as they get worse. Thanks. Joy How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 Hi Leanne! No need to apologize about venting-where else would you go? I am feeling great! I have been slowly coming off the steroids. I am down to 5 mg and I can't tell you how much better I feel. I did get sick last week (sinus infection) and had to take antibiotics but I am really learning how to pace myself to get through the day and to be in tune with my body in order to catch infections quicker. I had a small pity party last week- I had to sell my beautiful home since I just can't afford it and I can't maintain it any longer. I had prayed about it before I put it on the market and it sold in 1 day! My daughter flew in yesterday from Oregon and she is going to stay for a month to help me pack and to help me unpack as soon as I find a place. I have always wanted to live by the beach and after I got done feeling sorry for myself I am actually quite excited about waking up to ocean waves each morning. I also am feeling very lucky that I have such great kids. Tami will pack and 3 of my sons will do the moving. All I have to do is sit on the couch and supervise. Maybe I will but a hawaiian bra to match Gordon's and then I will really be ready to celebrate! Love you-Leanne Storch wrote: Hello all, I was diagnosed 1/03 and started on oxygen (at night) right away. Went on 24/7 about a year later. It's funny you bringing up the 3-5 life span because I was just thinking I'm coming up on 4 years.....so....do I only have a year or 2 to live? I can't live my life thinking this way. I can't let this disease define me. I can't live waiting to die. We have to do all we can to not let it get the best of us. Louise, good for you enrolling in pulmonary rehab. I hope it works out well for you. , welcome back. We've missed you. How are you feeling? Now Beth is on her way to see her son and sister. I love that we just keep on going.... Thanks to all of you for being here. This is such a safe place to go. Working at the Foundation gets hard sometimes because I live with the disease and deal with the disease daily and it's heart breaking on one hand and soul lifting on another. I have to trust in God that there is a purpose for all of this, but some days it gets hard. I lost another friend Ron who lived in Florida - he was waiting for a transplant and he was 65 years old. He had such a joy of life. He was a snow boarder, free diver, loved to fly and I'm going to miss him. Sorry, kids, just needed to vent a little... Leanne john closs <lobofroto> wrote: I concur with , I was diagnosed with IPF in 1996, but did not go on oxygen until 6/05 and then it was @ 3 liters 24/7. Now I need 4-5 liters but I have enrolled in a Pulmonary Fibrosis Rehab. Class and plan to continue to do whatever I can to keep going. So, go for whatever you think will help. G-d Bless, . Louise /.ipf/96 <kpoooh9> wrote: Don't believe in the numbers. We are all effected in different ways and at different times. Some of us believe that the 3-5 time clock doesn't start till the o2 hose goes up your nose for 24/7. I was diagnosed by lung biopsy 8/00 and started O2 24/7 8/04and diagnosed with PH 6/06. I am not eligible for a lung TX as I also have Polymyositis 12/98. I am still kicking just not as high. P 58 yr old joynoel3208 <joynoel3208> wrote: You know how you always hear the est. life expectancy is 3-5 years. I'm wondering if anyone has a reply to that. And, are most people now electing to get a lung transplant as they get worse. Thanks. Joy How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Do you Yahoo!?Get on board. You're invited to try the new Yahoo! Mail. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 , Thanks for the encouraging words. Some days just SUCK! as I know we all know. I went on my new treadmill this weekend and I was trying one of the programs. Incline. Well didn't the sucker go up to 4.5 miles per hour and I had a hell of a time getting it back down and my saturation dropped to 80 and I couldn't get it back up. My husband turned up my 02 but it stayed down for about a minute. It scared me. I felt sick. I laid down for two hours. I couldn't move. I wanted to throw up. I'm fine now, but boy o boy did I learn my lesson. I just have to pace myself a little better. I went for a 45 minute walk both yesterday and today and I'm feeling ok. So, I just can't overdo it I guess. It is all about pacing ourselves. How's the breathing going? I'm so glad that you are off the prednisone. As we've said before, it's the best of drugs and the worst of drugs. , I'm glad that your family is rallying behind you. I'm sorry that you had to sell your beautiful house, but God has good things in store for you at your beach house. I'm jealous. Listening to the ocean waves all the time. How peaceful. How idyllic! God bless you and your beautiful family. Love you right back, Leannedenise randel wrote: Hi Leanne! No need to apologize about venting-where else would you go? I am feeling great! I have been slowly coming off the steroids. I am down to 5 mg and I can't tell you how much better I feel. I did get sick last week (sinus infection) and had to take antibiotics but I am really learning how to pace myself to get through the day and to be in tune with my body in order to catch infections quicker. I had a small pity party last week- I had to sell my beautiful home since I just can't afford it and I can't maintain it any longer. I had prayed about it before I put it on the market and it sold in 1 day! My daughter flew in yesterday from Oregon and she is going to stay for a month to help me pack and to help me unpack as soon as I find a place. I have always wanted to live by the beach and after I got done feeling sorry for myself I am actually quite excited about waking up to ocean waves each morning. I also am feeling very lucky that I have such great kids. Tami will pack and 3 of my sons will do the moving. All I have to do is sit on the couch and supervise. Maybe I will but a hawaiian bra to match Gordon's and then I will really be ready to celebrate! Love you-Leanne Storch wrote: Hello all, I was diagnosed 1/03 and started on oxygen (at night) right away. Went on 24/7 about a year later. It's funny you bringing up the 3-5 life span because I was just thinking I'm coming up on 4 years.....so....do I only have a year or 2 to live? I can't live my life thinking this way. I can't let this disease define me. I can't live waiting to die. We have to do all we can to not let it get the best of us. Louise, good for you enrolling in pulmonary rehab. I hope it works out well for you. , welcome back. We've missed you. How are you feeling? Now Beth is on her way to see her son and sister. I love that we just keep on going.... Thanks to all of you for being here. This is such a safe place to go. Working at the Foundation gets hard sometimes because I live with the disease and deal with the disease daily and it's heart breaking on one hand and soul lifting on another. I have to trust in God that there is a purpose for all of this, but some days it gets hard. I lost another friend Ron who lived in Florida - he was waiting for a transplant and he was 65 years old. He had such a joy of life. He was a snow boarder, free diver, loved to fly and I'm going to miss him. Sorry, kids, just needed to vent a little... Leanne john closs <lobofroto> wrote: I concur with , I was diagnosed with IPF in 1996, but did not go on oxygen until 6/05 and then it was @ 3 liters 24/7. Now I need 4-5 liters but I have enrolled in a Pulmonary Fibrosis Rehab. Class and plan to continue to do whatever I can to keep going. So, go for whatever you think will help. G-d Bless, . Louise /.ipf/96 <kpoooh9> wrote: Don't believe in the numbers. We are all effected in different ways and at different times. Some of us believe that the 3-5 time clock doesn't start till the o2 hose goes up your nose for 24/7. I was diagnosed by lung biopsy 8/00 and started O2 24/7 8/04and diagnosed with PH 6/06. I am not eligible for a lung TX as I also have Polymyositis 12/98. I am still kicking just not as high. P 58 yr old joynoel3208 <joynoel3208> wrote: You know how you always hear the est. life expectancy is 3-5 years. I'm wondering if anyone has a reply to that. And, are most people now electing to get a lung transplant as they get worse. Thanks. Joy How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Do you Yahoo!?Get on board. You're invited to try the new Yahoo! Mail. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 Leanne, 4.5 mph???!!!! Holy Moly girl, don't do that to yourself! I'd be terrified to try anything that fast. Go easy on yourself. I never tried any of the pre-programmed programs on the treadmill and now I don't think I will. I'm glad you're feeling better but be careful! We love you and want you healthy. I can only imagine how much of a toll this could take on you. Please give yourself a break and know that no one here expects you to be superwoman. You're not just our moderator but you're one of us too and we all know that. Love, Beth NSIP/IPF 06/06Draw close. Hold hands. Life is short. God is good. Re: ipf , Thanks for the encouraging words. Some days just SUCK! as I know we all know. I went on my new treadmill this weekend and I was trying one of the programs. Incline. Well didn't the sucker go up to 4.5 miles per hour and I had a hell of a time getting it back down and my saturation dropped to 80 and I couldn't get it back up. My husband turned up my 02 but it stayed down for about a minute. It scared me. I felt sick. I laid down for two hours. I couldn't move. I wanted to throw up. I'm fine now, but boy o boy did I learn my lesson. I just have to pace myself a little better. I went for a 45 minute walk both yesterday and today and I'm feeling ok. So, I just can't overdo it I guess. It is all about pacing ourselves. How's the breathing going? I'm so glad that you are off the prednisone. As we've said before, it's the best of drugs and the worst of drugs. , I'm glad that your family is rallying behind you. I'm sorry that you had to sell your beautiful house, but God has good things in store for you at your beach house. I'm jealous. Listening to the ocean waves all the time. How peaceful. How idyllic! God bless you and your beautiful family. Love you right back, Leannedenise randel <dnsrndlyahoo (DOT) com> wrote: Hi Leanne! No need to apologize about venting-where else would you go? I am feeling great! I have been slowly coming off the steroids. I am down to 5 mg and I can't tell you how much better I feel. I did get sick last week (sinus infection) and had to take antibiotics but I am really learning how to pace myself to get through the day and to be in tune with my body in order to catch infections quicker. I had a small pity party last week- I had to sell my beautiful home since I just can't afford it and I can't maintain it any longer. I had prayed about it before I put it on the market and it sold in 1 day! My daughter flew in yesterday from Oregon and she is going to stay for a month to help me pack and to help me unpack as soon as I find a place. I have always wanted to live by the beach and after I got done feeling sorry for myself I am actually quite excited about waking up to ocean waves each morning. I also am feeling very lucky that I have such great kids. Tami will pack and 3 of my sons will do the moving. All I have to do is sit on the couch and supervise. Maybe I will but a hawaiian bra to match Gordon's and then I will really be ready to celebrate! Love you-Leanne Storch wrote: Hello all, I was diagnosed 1/03 and started on oxygen (at night) right away. Went on 24/7 about a year later. It's funny you bringing up the 3-5 life span because I was just thinking I'm coming up on 4 years.....so. ...do I only have a year or 2 to live? I can't live my life thinking this way. I can't let this disease define me. I can't live waiting to die. We have to do all we can to not let it get the best of us. Louise, good for you enrolling in pulmonary rehab. I hope it works out well for you. , welcome back. We've missed you. How are you feeling? Now Beth is on her way to see her son and sister. I love that we just keep on going.... Thanks to all of you for being here. This is such a safe place to go. Working at the Foundation gets hard sometimes because I live with the disease and deal with the disease daily and it's heart breaking on one hand and soul lifting on another. I have to trust in God that there is a purpose for all of this, but some days it gets hard. I lost another friend Ron who lived in Florida - he was waiting for a transplant and he was 65 years old. He had such a joy of life. He was a snow boarder, free diver, loved to fly and I'm going to miss him. Sorry, kids, just needed to vent a little... Leanne john closs <lobofrotoyahoo (DOT) com> wrote: I concur with , I was diagnosed with IPF in 1996, but did not go on oxygen until 6/05 and then it was @ 3 liters 24/7. Now I need 4-5 liters but I have enrolled in a Pulmonary Fibrosis Rehab. Class and plan to continue to do whatever I can to keep going. So, go for whatever you think will help. G-d Bless, . Louise /.ipf/96 <kpoooh9yahoo (DOT) com> wrote: Don't believe in the numbers. We are all effected in different ways and at different times. Some of us believe that the 3-5 time clock doesn't start till the o2 hose goes up your nose for 24/7. I was diagnosed by lung biopsy 8/00 and started O2 24/7 8/04and diagnosed with PH 6/06. I am not eligible for a lung TX as I also have Polymyositis 12/98. I am still kicking just not as high. P 58 yr old joynoel3208 <joynoel3208@ yahoo.com> wrote: You know how you always hear the est. life expectancy is 3-5 years. I'm wondering if anyone has a reply to that. And, are most people now electing to get a lung transplant as they get worse. Thanks. Joy How low will we go? Check out Yahoo! Messengers low PC-to-Phone call rates. Do you Yahoo!?Get on board. You're invited to try the new Yahoo! Mail. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 Hi Joy, I can't remember your story so I will just tell you that the decision for transplant or not is such a hard one. I am trying to loose 20 more lbs. to be qualified for TX I am not sure yet. You can read so much about this monster and about TX that it takes your breath away..... I one day say yes I'm doing it. Next No It's just to iffy. We'll see down the road. It is a very individual decision. At 64 I am really praying about it. Love and Prayers, Peggy 9/04 ipf You know how you always hear the est. life expectancy is 3-5 years. I'm wondering if anyone has a reply to that. And, are most people now electing to get a lung transplant as they get worse. Thanks. Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 Leanne! I agree with Peggy-Are you crazy?!!! 4.5!!! You must have been scared to death. I was just reading about it. My breathing seems to be stabilizing AND I can work up to 3.0 for about 10 minutes. Use to do 4.5 for 30 minutes 4 times a week and then work up to 6.0 Unfortunately I think those days are long gone. I do feel so good right now and I am sure it's because the prednisone dose is so low. Take care and no more o2 readings of 80! Leanne Storch wrote: , Thanks for the encouraging words. Some days just SUCK! as I know we all know. I went on my new treadmill this weekend and I was trying one of the programs. Incline. Well didn't the sucker go up to 4.5 miles per hour and I had a hell of a time getting it back down and my saturation dropped to 80 and I couldn't get it back up. My husband turned up my 02 but it stayed down for about a minute. It scared me. I felt sick. I laid down for two hours. I couldn't move. I wanted to throw up. I'm fine now, but boy o boy did I learn my lesson. I just have to pace myself a little better. I went for a 45 minute walk both yesterday and today and I'm feeling ok. So, I just can't overdo it I guess. It is all about pacing ourselves. How's the breathing going? I'm so glad that you are off the prednisone. As we've said before, it's the best of drugs and the worst of drugs. , I'm glad that your family is rallying behind you. I'm sorry that you had to sell your beautiful house, but God has good things in store for you at your beach house. I'm jealous. Listening to the ocean waves all the time. How peaceful. How idyllic! God bless you and your beautiful family. Love you right back, Leannedenise randel <dnsrndl> wrote: Hi Leanne! No need to apologize about venting-where else would you go? I am feeling great! I have been slowly coming off the steroids. I am down to 5 mg and I can't tell you how much better I feel. I did get sick last week (sinus infection) and had to take antibiotics but I am really learning how to pace myself to get through the day and to be in tune with my body in order to catch infections quicker. I had a small pity party last week- I had to sell my beautiful home since I just can't afford it and I can't maintain it any longer. I had prayed about it before I put it on the market and it sold in 1 day! My daughter flew in yesterday from Oregon and she is going to stay for a month to help me pack and to help me unpack as soon as I find a place. I have always wanted to live by the beach and after I got done feeling sorry for myself I am actually quite excited about waking up to ocean waves each morning. I also am feeling very lucky that I have such great kids. Tami will pack and 3 of my sons will do the moving. All I have to do is sit on the couch and supervise. Maybe I will but a hawaiian bra to match Gordon's and then I will really be ready to celebrate! Love you-Leanne Storch wrote: Hello all, I was diagnosed 1/03 and started on oxygen (at night) right away. Went on 24/7 about a year later. It's funny you bringing up the 3-5 life span because I was just thinking I'm coming up on 4 years.....so....do I only have a year or 2 to live? I can't live my life thinking this way. I can't let this disease define me. I can't live waiting to die. We have to do all we can to not let it get the best of us. Louise, good for you enrolling in pulmonary rehab. I hope it works out well for you. , welcome back. We've missed you. How are you feeling? Now Beth is on her way to see her son and sister. I love that we just keep on going.... Thanks to all of you for being here. This is such a safe place to go. Working at the Foundation gets hard sometimes because I live with the disease and deal with the disease daily and it's heart breaking on one hand and soul lifting on another. I have to trust in God that there is a purpose for all of this, but some days it gets hard. I lost another friend Ron who lived in Florida - he was waiting for a transplant and he was 65 years old. He had such a joy of life. He was a snow boarder, free diver, loved to fly and I'm going to miss him. Sorry, kids, just needed to vent a little... Leanne john closs <lobofroto> wrote: I concur with , I was diagnosed with IPF in 1996, but did not go on oxygen until 6/05 and then it was @ 3 liters 24/7. Now I need 4-5 liters but I have enrolled in a Pulmonary Fibrosis Rehab. Class and plan to continue to do whatever I can to keep going. So, go for whatever you think will help. G-d Bless, . Louise /.ipf/96 <kpoooh9> wrote: Don't believe in the numbers. We are all effected in different ways and at different times. Some of us believe that the 3-5 time clock doesn't start till the o2 hose goes up your nose for 24/7. I was diagnosed by lung biopsy 8/00 and started O2 24/7 8/04and diagnosed with PH 6/06. I am not eligible for a lung TX as I also have Polymyositis 12/98. I am still kicking just not as high. P 58 yr old joynoel3208 <joynoel3208> wrote: You know how you always hear the est. life expectancy is 3-5 years. I'm wondering if anyone has a reply to that. And, are most people now electing to get a lung transplant as they get worse. Thanks. Joy How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Do you Yahoo!?Get on board. You're invited to try the new Yahoo! Mail. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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