• thank you so much for responding to my mail. Sorry to say not feeling much better & this is not like me I think that’s why all the worry around me…sometimes I think & this all is for what ?? maybe 6 months? I am so sorry to say this to all those awesome people out there struggling everyday…..bless each & every one of you .Katlheen.

    also as a…[Read more]

  • Hello, I was so dispointed & surprised how much it affected me.(I wrote before) for almost 6 yrs .I did great but I really worked hard for it,but then in Oct. had an exacerbation & was hospitalized & told I would now have to be on Oxygen all the time and a high amount 8 resting 15 assertion but never used the 15 so far.   I am really down about t…[Read more]

  • Kathleen Greco posted a new activity comment 1 month, 2 weeks ago

    Mark,what a beautiful way to spent time,so happy you got to enjoy it..Take care ,Kathleen

  • Kathleen Greco posted a new activity comment 1 month, 2 weeks ago

    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…[Read more]

    • 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…[Read more]

  • Kathleen Greco posted a new activity comment 1 month, 3 weeks ago

    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…[Read more]

        • 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…[Read more]

  • 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…[Read more]

    • 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…[Read more]

            • 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…[Read more]

    • So sorry. Luck to you. Arthur

  • Thank You very much….@steve-dragoo & others who contributed to giving me info & sites that may or may not be useful for the medication, Metformin but at least enough info to get a handle on what’s going on with it.

    Thank you for your time& information. Kathleen Greco

  • Hello,

    I  like to know more about the drug Metformin & wonder is it beneficial or is it not? reading the comments one can not tell..2 people said it was & 1 said it was useless pretty much.

  • @thom, I have a hernia also & it’s very hindering to me, it’s very large & now wonder if it has something to do with IP  also same thing with me … it’s hard to be really comfortable but I have a great Dr’s. & hospitals too.

    I have checked also about the sweating  as I do have issues with that..ok I’ll write  more later

    sta

  • I didn’t realize that the humidity could do that & make one feel like something awful..I even went to urgent care.

  • Yes, I have heard of pineapple long ago for mucus & by a couple of Doctors also . I know people who use it drink it…eat it during allergy season. I myself can eat a half in the afternoon than the other half in the evening.

    It is really a wonder food for mucus. I have to find the info on it again & why & how it helps.

    I asked before does anyone…[Read more]

  • could someone tell me if this number morc RNA phone number is MORC RNA 1 586-273-2216 is related to this report I keep getting calls from this number & when I looked it up it had something to do with what (I think) you are talking about. monARC BioNetworksIt’s important yet cannot find info on it maybe someone out there knows something about…[Read more]

  • Kathleen Greco posted a new activity comment 11 months, 1 week ago

    Still waiting for a reply please!I had asked about Steve? having these free cards or something on that order to travel or for hotel rooms Steve who was talking about hotel rates some free? ^ other things but could not find more info …Thinking I might still be able to fly? haven’t discussed it with Dr.yet either. But would love a get-away rea…[Read more]

  • Kathleen Greco posted a new activity comment 11 months, 1 week ago

    I had asked about Steve? having these free cards or something on that order to travel or for hotel rooms Steve who was talking about hotel rates some free? ^ other things but could not find more info …THinking I might still be able to fly? haven’t discussed it with Dr.yet either. But would love a get-away really & had asked for more info….do you…[Read more]

    • Still waiting for a reply please!I had asked about Steve? having these free cards or something on that order to travel or for hotel rooms Steve who was talking about hotel rates some free? ^ other things but could not find more info …Thinking I might still be able to fly? haven’t discussed it with Dr.yet either. But would love a get-away rea…[Read more]

  • I didn’t know where to edit letter below ..because I meant Shoulder in note not should and some years ago was not just replacement but KNEE replacement or please take a min & you can see what I meant ….I have noticed with these notes too I have to look twice to see what was meant (but there must be a edit click) also was very interested in…[Read more]

    • Hello Kathleen, it is nice to hear from you and would like to welcome you in your forum. I see you currently have a lot going on. It’s ok, everything you mentioned is what happens to us who suffer from pulmonary fibrosis. You will find this forum is a safe place for you to vent, ask questions, and of course learn about others who going through t…[Read more]

    • I had asked about Steve? having these free cards or something on that order to travel or for hotel rooms Steve who was talking about hotel rates some free? ^ other things but could not find more info …THinking I might still be able to fly? haven’t discussed it with Dr.yet either. But would love a get-away really & had asked for more info….do you…[Read more]

      • Still waiting for a reply please!I had asked about Steve? having these free cards or something on that order to travel or for hotel rooms Steve who was talking about hotel rates some free? ^ other things but could not find more info …Thinking I might still be able to fly? haven’t discussed it with Dr.yet either. But would love a get-away rea…[Read more]

  • I have not been on to see or remark as much as I would like regarding news on PF/ IPF but do at glance at it then later I try to red more. I do believe this is such a valuable site for everyone who has P.F or in some way been touched by itas so many of us have.I have IPF & will be going into fourth yr…wow writing that yr down I must look up to…[Read more]

    • Hello again Kathleen, I am so happy you have a positive outlook. It’s nice to see and hear about a PF patient who is so active and also helping others as you are. Thank you

  • IHi, how is everyone doing,well here it is November & the season to be, Thankful!! ..Would everyone like to tell us all what you are grateful for? or many things you are grateful for…let’s spread the gratitude around.. I am grateful for Family…friends..that I am still here to enjoy them all..Thanking anyone who has been kind to me when I…[Read more]

    • Hi @kathleen-greco, this is a wonderful topic… I love it: thank you for posting! Being thankful is so important especially in today’s world where so much negativity is in the news and around the world. Focusing on gratitude is so good for our mental and emotional health. I’ve actually written many columns about it 🙂

      If you posted this in one…[Read more]

  • I’m sure everyone on this forum will agreed that exercise is the most important thing we can do for our IPF & just in general to feel & look well.I know I’ve been told this by my Dr.’s & in P.T. also.If we are limited in terms of exercise one can always do the breathing exercises or better yet both. There is one exercise you can do anywhere &…[Read more]

  • Thank you for putting my question out there about having an occasional drink, wine or some other preference. Also a big issue with me is swelling of legs ,feet & stomach protrusion (which stomach bloating is a side affect my Dr. said …as for other swelling it’s really becoming a big issues right now & waiting for answers… Maybe be due to…[Read more]

    • Hi @kathleen-greco, no problem, thank you for bringing it up to us as a question. It is a great one, and I am certainly interested in learning more about it as well! Sorry to hear you’re dealing with the swelling of your legs and feet too. This is a new symptom for me, and I’m not sure if it is medication-related or disease progression. I’ll need…[Read more]

  • I just read in here that one person who is on Esbriet had a glass of wine or rum & coke..can you (anyone) know if you can have mixed drink or wine??? I would love a glass of wine now &then.

    • Hi @kathleen-greco, this is an excellent question! Probably one best suited for the nurse of the anti-fibrotic drug you’re taking, but I don’t recall ever being told I couldn’t have a glass of wine on ofev. I’ve never “over done” it since starting the drug, but I definitely enjoy a glass of wine now and then…. perhaps I should have checked this…[Read more]

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