Re: want better stats on IPF

[Guest guest]

Owen, When looking at stats alone, the info can be 'deceptive'. As you probably already know, there is a significant difference between IPF and PF. With IPF, the cause is unknown. With PF, the cause is known. Whenever the cause is unknown, it is automatically labeled IPF. Most (but not all) cases of IPF involve lung inflammation. (Most known organic causes fall under the category of PF..not IPF.) There are only two ways to reduce/eliminate inflammation: remove the cause or use steroids. If the cause (even if unknown) is removed, the only other factor influencing life expectancy seems to be the amount of damage done to the lungs. Just because a person has IPF does not mean the cause has not been removed. It only means the cause is not known. In like manner, just because the cause is known does not mean it can always be removed! Therefore, the real

question is .... "Has the cause been removed?" Oftentimes, when one has IPF, it is difficult to know if the cause has been removed BECAUSE the person is on steroids to, hopefully, minimize inflammation. (Steroids can cause problems unrelated to PF.) If the cause has been removed, inflammation will subside on its own. If, without steroids, inflammation subsides before significant damage has occurred (terminal damage to other organs), life expectancy will be greater than if the cause has not been removed or if terminal damage has been done to other organs (lack of 02). Assuming the cause has been removed (so that no further fibrosis occurs), assuming that other organs have not been terminally damaged by lack of adequate 02, and assuming that you have sufficient lung capacity to do some form of exercise, you have some control over how long you live as well as the quality of that life. However, if the cause has

not been removed, other organs have been terminally damaged, or you have lost too much lung capacity to do even breathing exercises, your lifespan will be less. I refused to allow my life to be determined by 'stats'. I was told I would die very soon after my open lung biopsy. Those who saw me then find it hard to believe where I am now! Granted, I still have only 52% diffusion, had to move to sea level to maximize lung volume, and had to learn to do deep breathing exercises as well as strength-training. However, I intend ot live for many years! From what I can gather (on the internet), if the fibrosis has stabilized (cause has been removed), and, assuming that I don't die of some other unrelated cause, my lungs will eventually 'wear-out' from having to 'over-work' (due to the fibrosis). As I reach this point, my lungs will weaken and put stress on my

heart. I will then either die of pneumonia or congestive heart failure. I do breathing exercises and strength training daily to stregthen my lungs in the hopes of pushing this reality into the distant future. Obviously, if you have been diagnosed as having IPF, the doctors do not know the cause of your fibrosis. Are you on steroids? If not, have your PFT shown any improvement which might indicate a decrease in lung inflammation? mary reillyov wrote: Hi - I'm Owen and new to the group, but I like it already. I'm working my way up the archives from first to, well, this one. But I haven't seen any reference to better stats on IPF than the one from

the Foundation that gives only the 50% rate for everyone. What I'm interested in is more detailed information about the tails of the distribution. What, for instance, are the ages, sexes and the like for those who die earlier than the 3 to 6 years for the 50% rate and what are the age characteristics for those that survive longer. And all like that. So what, if you know, is the best source for such statistics? Naturally I'd love it if someone knew exactly who to contact, so if that's the case tell me. But even if you only have an idea of where to start I'd appreciate that too. And, ofcourse, I expect I'll be insatiable about this sort of thing so if there is a source that can tell me the typical progress of the disease, (when is O2 typically perscribed after diagnosis by age, sex and the like - when is pul rehab? - etc.) so if you know sources for that sort of thing I'd

appreciate. Someone must be collecting such info but the docs are so scared of being shown to have been wrong they don't tell people the stats, (if they know them,) for fear of being misinterpreted. Thanks. Best wishes Owen

marymassung

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[Guest guest]

Hi Owen,

What you will find with this group is everyone is typical, yet they are atypical. My husband has had this cursed disease for about 4 1/2 years. He is 54 years old. His lung volume is 53% and diffusing capacity is a mere 35%. However-he works a full time job as an electrician. He is on oxygen but only 2L. After and during strenuous activity he uses the O2 at 6L. His doctor did not suggest O2, my husband asked if it was a good idea, the doc said with his numbers O2 might be a good idea. We are hopeful that his health will stay stable long enough to be considered for a transplant. To answer your questions, though, everyone seems to progress at their own rate. I have heard of those who are quite young and healthy who progress more rapidly then the older patients. I say just keep busy. Do what you are able to do. Keep up-to-date with new information on this disease. We all joined for the same reason that you did. The comradery. In reading through the archives I'm sure that you noticed many similarities. Sleep apnea for one. Those on this site want to live as long as possible. They want to have a quality life. Most of all it is comforting to talk with others about anything big or small.

Carman

-------------- Original message -------------- Hi - I'm Owen and new to the group, but I like it already. I'm working my way up the archives from first to, well, this one. But I haven't seen any reference to better stats on IPF than the one from the Foundation that gives only the 50% rate for everyone. What I'm interested in is more detailed information about the tails of the distribution. What, for instance, are the ages, sexes and the like for those who die earlier than the 3 to 6 years for the 50% rate and what are the age characteristics for those that survive longer. And all like that. So what, if you know, is the best source for such statistics? Naturally I'd love it if someone knew exactly who to contact, so if that's the case tell me. But even if you only have an idea of where to start I'd appreciate that too. And, ofcourse, I expect I'll be insatiable about this sort of thing so if there is a source that can tell me the typical progress of the disease, (when is O2 typically perscribed after diagnosis by age, sex and the like - when is pul rehab? - etc.) so if you know sources for that sort of thing I'd appreciate. Someone must be collecting such info but the docs are so scared of being shown to have been wrong they don't tell people the stats, (if they know them,) for fear of being misinterpreted. Thanks. Best wishes Owen