Posted , 5 users are following.
We need to know more about pulumonary fibrosis. We are depressed about how long will we live 🙏🙏😇😇 please professional help would be great..... Ipf is different than pf.
0 likes, 2 replies
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eric87817 debora82968
Posted
I find that this site helps me from feeling too "alone". It is great. There are some great folks here.
Depression is a pretty big topic. I think a lot of people do not understand the difference between depression and just bing bummed out. Also is the difference between a kind of normal, or expected period of depression (grief and the like) from real clinical depression.
When I am asked about being depressed by any of my far-too-many doctors these days, I explain the difference between my kind of perpetual state of melancholy and bouts of actual depression which I describe as feeling physically through my whole body. It is like being immersed in a cloud.
As far as not knowing how long we will live, yes, I get that. We are use to being able to make plans. We spend a great deal of our lives living in the future. I think now we must better familiarize ourselves with living in the present, something our culture does not prepare us for.
I am going to Stanford today for evaluation to see about getting on the lung transplant list. My third such evaluation. I feel damned if I get on it (I really am not keen on this transplant thing) and damned if I do not - more of a kind of feeling of personal failure. That, quite obviously, is a depressive thought in and of itself. The irony, the irony.
As for the "need to know more about IPF" thing, it seems to me that the awareness and research is growing extremely fast. Research projects, grants and studies abound on the Pulmonary Fibrosis News site (https://pulmonaryfibrosisnews.com ). Enough so that I can't help wondering if I should stay off the transplant list and chance it with meds and emerging treatments.
Didn't mean to stray off course here, but talking about our lives is a pretty dense topic isn't it?
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adrienne35302 debora82968
Posted
Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract
Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.