Because of the Holidays

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I have not told My Family what is going on. I feel it best. Have not seen Dr yet for a plan on whats next for me, This was my first CT so I read the results my self, It shows PF & a few small noduals 4mm. I have COPD & a racing heart hardining of the arteries & alot more, Just wondering how long I will live , so I can plan . My Family is the most important thing to me. I will NOT be a burden to them. I took care of My Mom for 3 yrs 24/7 & my baby sis for 5 yrs She passed in March of this year  My Little sister passed 7 mos previous. & My Big sis 5 years ago.  I am so Happy I had the chance to care & Love them so much. I never saw it as a burden to me, BUT today it seems even Family are overwhelmed with so much stress .Any Ideas ? T/Y all

 

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    Hello Nancy

    It must be very difficult for you being diagnosed with PF with the other ailments , You seemed to have a tough if very rewarding few years looking after your family .My wife has some troubled years with her 3 brothers dying in a short space of time. Because of this I have not told her the whole story when I was diagnosed with PF 2  years ago.I feel I have had the problem possibly 4 years having some chest problems when I was running and putting iot down to over exertion at my age. I am 68 but have been fit all my life . When I was diagnosed I decided to keep as much as I could for as long as possible. I have been on nintedanib for 6 months now and hopefully it will delay the disease. I am pretty good and able to walk a couple of hours daily but at a slower pace . My family know I have a lung problem but not the seriousness of it. I have  all my affairs ready to sort out iwhen my disease progresses,transfer of house savings etc from joint names to my wifes name as I want her to have as little legal stuff to worry about when I go. I am going for my three monthly check up next week so am hoping all will be reasonably well as all my family are coming home for Christmas. I hope you stay well and I will be thinking of you. Regards 

    John 

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    • Posted

      Thank you John for your reply,  I'm happy to hear your are doing as well as you are smile  I guess after seeing my Dr. I will know more of what to do. Walking is very hard for me, I'm lucky to have my husband that loves to go to the store ! Hahah , Big help to me there smile I will prob let family know what I think they can handle after the Holidays. Of course we never know when anyone will go, But feel its important to get everything in order as well. Thanks again, Everything I read on this is great for me, information is key. Happy Holidays to you & All. 

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    • Posted

      Hello John, I started a new discussion this afternoon, I'm so confused right now !! It is really hurting me to type, so if you feel up to it, Maybe you can take a look I titled it Now I'm really confused. T/Y Best wishes to you  & T/Y again  Nancy

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    Send toRev Pneumol Clin.1985;41(2):91-100.[Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]

    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.

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