• Kathleen Greco posted an update 3 months, 2 weeks ago

    Hi I was really active & doing well even my doc’s en pressed but then in Sept I had an exacerbation & everything when down hill .They say now I have 6 months to live. I cannot believe this & in total shock I am on oxygen for the first time. Was in hospital; on steroids .also but was able to com-home with the highest levels one could have at home. . will write more later very depressed. Hope everyone has a nice Christmas

    • Hello Kathleen, please keep your spirits up. This is such a complicated disease you may remain stable for years to come. Please update us. Take care and best wishes, mark.

      • thank you for the concern…working on so many things now.Does anyone out there had this happen & did then recover? I’m still on 6 if sitting & so on 15 they say if I move a lot>

        • Kathleen, my highest dosage was 8 lpm at exertion. I had the same problem when I started to move. At rest I was at 2-4 lpm and as soon as I stood up my heart rate shot up and o2 saturation went down considerably. Mark

          • Really,this has got me very concerned & usually I am not one to panic or anything…I am a therapist and take my own advice most times. This tie before first time in hospital I was on no oxygen at all but came home with it at 15 the highest anyone can come home on it ……without moving around 4-6 and a order for hospice care. but My son & i& I chose Hap home health care…going to give it my best shot.Will write more if interested have a meeting now,but either way THANK YOU so much that even gave me a little hope. How about you? what is going on there? Take Care Kathleen

            • Thank you Kathleen for thinking of me during this time when you are not feeling well and have been given much to think about. I am doing fine, I recently celebrated my 4th lungaversary and also had a favorable appointment with my transplant doctor. Yesterday I returned from California visiting family and touring the coast from Monterey to Morro Bay. Take care and check in. Mark.

    • So sorry. Luck to you. Arthur

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