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Table 2 Information sought by reader-participants

From: Seeking and sharing: why the pulmonary fibrosis community engages the web 2.0 environment

Type of information sought Number Example post
Pathophysiology 43 What usually causes a exacerbation in IPF? Mine always follow, by several weeks, being sick with a cold that does or not does go to my lungs. We have been treating the exacerbation as inflammation and since I respond so well to using prednisone at that time, that would seem to confirm the inflammation… if IPF isn’t inflammation, why would a cold now trigger inflammation and is inflammation a normal response in the lungs to a cold?
Signs/symptoms 39 I was diagnosed with lung cancer in August of 2012 using a CT scan (15 months ago). In March 2013 I was diagnosed as having IPF from a follow up CT scan for the lung cancer issue (8 months ago). I have no symptoms of lung cancer or IPF to date. I have a question for you if you can answer for me. How long after being diagnosed for there diseases, should I expect to develope symptoms?
Medicinal/pharmaceutical treatment 37 Is Cyclophosphamide more likely than Imuran or Cellcept to produce drug induced megloblastic or pernicious anemia. I have LcSSc and have been on a 50 mg daily dose of Azathioprine now since 2005. I was on prednisone for only 6 months in 2005, but none since then. Last year I developed pernicious anemia and am suspicious that Azathioprine may have contributed to the condition. I also had a laproscopic partial fundoplication procedure, and am aware that development of pernicious anemia after the procedure is a possibility. My hematologist indicates I have an inadequate amount of intrinsic factor, and regular B12 injections have returned my CBC counts to normal levels. Would Cyclophosphamide make the pernicious anemia problem worse?
Diagnoses and diagnostic process 36 I have a diagnosis of LcSSc (Limited Cutaneous Systemic Sclerosis) with a UIP pattern of Interstitial Lung Disease. My Rheumatologist and Pulmonologist use different terminology when defining my diagnosis. The American Thoracic Society and the American College of Rheumatology may have different diagnostic criteria, which may explain the difference. I have heard my diagnosis described as LcSSc with secondary ILD-UIP pattern. Based upon exact wording used in the diagnostic criteria, what is the diagnosis for a patient with LcSSc who also has Pulmonary Fibrosis with a UIP pattern.
Supplemental oxygen 24 I’ve asked my Pulmo about using O2 supplementation so that I can maintain a better excercise program, but he continues to maintain that I am not in need of O2 supplementation at this time. I’ve been trying to figure out why my body makes me quit exerting before my O2 level desaturates below 90 %. I asked my Pulmo about having an exercise stress test done but he doesn’t seem to interested in the idea. I have also been diagnosed with Scleroderma, and am wondering if the blood vessel constriction due to the collegen vascular problems can account for why my O2 levels don’t desaturate, even though my muscles feel like they are deprived of O2? Could supplemental O2 help with this situation and allow me to exercise more?
Behavioral/non-medicinal treatment 15 I was diagnosed with IPF in May 2013 - since modern medicine really has nothing to offer me in terms of treatment, I have been working with a natural therapist, as well as a 105-year old retired osteopath and physicist, who has been researching natural (Native American) therapies for over 60 years. My treatment includes natural anti-inflammatories, natural immune system support supplements, hydro-colon therapy, and an extremely high alkaline diet, with no wheat, no dairy, no sugar, no caffeine, and no alcohol. My follow up with my pulmonologist showed a "marked improvement" in lung function. What are your thoughts regarding diet and natural therapies?
Research 13 I seem to remember that you shared some information with me at one of our support group meetings in the summer…about a Michigan study on desaturation during the 6MWT (six minute walk test) which showed that those patients who desaturated during the test had a higher mortality rate than the patients that did not desaturate. The study concluded that the test seems to be the best predictor of longevity; better than Spirometry or PFT. Did I get that right…was there more news on that?
Lung transplantation 11 I do have a question about the transplant process. In 2009 I had a lung biopsy and told I had IPF I was also told I had 2 years to live unless I had a double lung transplant. Also told to make my funeral arrangements in case I didn't live long enough to get my transplant. I went through the process and told I needed to loose 6pds. to be listed. The visit I had to return when loosing the 6pds. I was told I didn't need a transplant at this time I was too healthy. I was 54 y.o. at that time and had high hopes of returning to my productive life. Now I am in limbo not healthy enough to do daily routines yet too healthy for a double lung transplant. Do you have any input on this kind of decision making? Thank you for taking time to respond to this question. I am sure I am not the only person out there that this has happened too.
Progression/prognosis of disease 9 is there any connection between age (my age) an how many years left to live with ipf ?
Administrative/community issues 7 I believe it's Courtney that keeps the PFF Support Group list up to date. However, your list is only for the US. Does PFF have any plans to incorporate a list for other countries such as Canada?
Origin of/explanation for disease 5 I was diagnosed with ILD this summer through a bronchoscopy and hi-res cat scan, and consider my case mild to moderate, for which I am grateful. I wondered as I read your blog — has there been any research into the relationship of dust mites and their waste to PF? For years I slept on the same mattress unaware of this problem. It would seem to me that their environmental “leavings” could be as much a problem as other animal dander and poo.
Treatment centers/referrals 4 As it is virtually impossible to obtain the stem cell treatment for IPF in the USA at this time, is there anywhere out of country where you would feel comfortable in having this treatment done?
Other 5 Any idea of how many home O2 concentrators are sold each year?