New pulmonary fibrosis post COVID: Preparing for vitual follow-up

Posted by susie333 @susie333, Jan 8 10:29am

daughter in hosp 1 week with covid pneumonia. discharged with pulmonary fibrosis after 2nd ctscan. now home on 02 3L and can't see pulmonologist virtually before end of Jan near Seattle. is it OK to wait this long.

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Hello, When they sent your daughter home with oxygen, did they also send an oximeter to keep an eye on her oxygen levels? Or does she have home nursing visits set up? If so, as long as there are no new problems, she should be okay to watch and wait. If not, she (or you if you are her caregiver) may want to contact her doctor to set it up. If she doesn't have a primary doctor, you could try social services at the hospital for help.
Sue

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@sueinmn

Hello, When they sent your daughter home with oxygen, did they also send an oximeter to keep an eye on her oxygen levels? Or does she have home nursing visits set up? If so, as long as there are no new problems, she should be okay to watch and wait. If not, she (or you if you are her caregiver) may want to contact her doctor to set it up. If she doesn't have a primary doctor, you could try social services at the hospital for help.
Sue

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she has the pulse oximeter. but she's afraid to use it now that she's home as that's when she saw it at 83% and then went to hosp. I was able to set up a telephone visit at mayo this Thurs!!! and I spoke to a local retired pulmonologist who gave me great info and wisdom. I'm 2000 miles from my daughter. while she was in hosp we facetimed pretty much 24/7. she was so anxious with good reason. thanks so much for ur reply. nice to know I'm not alone… she's still on daily steroid so that gives her blinded energy. she actually walked up their stairs last nite with her husband's assist.

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@susie333

she has the pulse oximeter. but she's afraid to use it now that she's home as that's when she saw it at 83% and then went to hosp. I was able to set up a telephone visit at mayo this Thurs!!! and I spoke to a local retired pulmonologist who gave me great info and wisdom. I'm 2000 miles from my daughter. while she was in hosp we facetimed pretty much 24/7. she was so anxious with good reason. thanks so much for ur reply. nice to know I'm not alone… she's still on daily steroid so that gives her blinded energy. she actually walked up their stairs last nite with her husband's assist.

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Since you were able to get her a phone appointment, tell her they will want as much info as she can provide. The pulse odometer will give them a picture of how she is doing – can you get her or her husband to record it several times a day, especially after any activity and when waking up. In addition if it falls below 90% while on the O2, she should call her doc or the hospital for adjustment of the flow.
They will also use it as a tool when she begins weaning from the oxygen.
You're a great mom, even long distance! Hang in there – we went through this in March, Aprill 2020 when our daughter was 1500 miles away.
Ask anytime for help, I know how hard this is.
Sue

REPLY
@susie333

she has the pulse oximeter. but she's afraid to use it now that she's home as that's when she saw it at 83% and then went to hosp. I was able to set up a telephone visit at mayo this Thurs!!! and I spoke to a local retired pulmonologist who gave me great info and wisdom. I'm 2000 miles from my daughter. while she was in hosp we facetimed pretty much 24/7. she was so anxious with good reason. thanks so much for ur reply. nice to know I'm not alone… she's still on daily steroid so that gives her blinded energy. she actually walked up their stairs last nite with her husband's assist.

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Have you been able to talk to your daughter about what she learned in her telephone visit today?
Have her symptoms improved at all since we talked last? And how are you holding up, Mom?
Sue

REPLY
@sueinmn

Have you been able to talk to your daughter about what she learned in her telephone visit today?
Have her symptoms improved at all since we talked last? And how are you holding up, Mom?
Sue

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thanks so much for checking in! when I scheduled this appt for her I must have missed something in the fine print…. they wanted $5K to proceed further. thus the call never happened. she did see her PCP on Tuesday who gave a very positive report/prognosis. but she will follow up with meeting a local pulmonologist virtually end of this month. in the meantime she is slowly lowering her 02 while monitoring her PO with activity. she is young so we have so much more hope. she will need to moderate her activity so she doesn't feel like she's run a marathon after doing laundry ir going up her stairs. my words for her are strength. courage. hope.

REPLY
@susie333

thanks so much for checking in! when I scheduled this appt for her I must have missed something in the fine print…. they wanted $5K to proceed further. thus the call never happened. she did see her PCP on Tuesday who gave a very positive report/prognosis. but she will follow up with meeting a local pulmonologist virtually end of this month. in the meantime she is slowly lowering her 02 while monitoring her PO with activity. she is young so we have so much more hope. she will need to moderate her activity so she doesn't feel like she's run a marathon after doing laundry ir going up her stairs. my words for her are strength. courage. hope.

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Wonderful news that she is recuperating – just remind her that anytime one has been hospitalized, there is a recovery period – it just seems that with Covid, it is longer. We got word this week that our son-in-law and 3yo grandson have Covid – fever, cough & stuffy nose – my daughter is sure the rest of them will follow (she's a school nurse, the schools are now remote due to enormously high levels of the virus circulating.) It seems like all her friends and their kids have it racing through their homes – kids are just little germ incubators – even hers, who are exceptionally good at masking! We just keep encouraging from afar – we couldn't be with them even if we travelled there.

Just keep encouraging your daughter and her family – maybe send her a meal subscription for a few weeks if you really want to do something. That's what my friend's daughter did for her after surgery down here. It really helped her to have some easy meals to prep.
Sue

REPLY
@sueinmn

Wonderful news that she is recuperating – just remind her that anytime one has been hospitalized, there is a recovery period – it just seems that with Covid, it is longer. We got word this week that our son-in-law and 3yo grandson have Covid – fever, cough & stuffy nose – my daughter is sure the rest of them will follow (she's a school nurse, the schools are now remote due to enormously high levels of the virus circulating.) It seems like all her friends and their kids have it racing through their homes – kids are just little germ incubators – even hers, who are exceptionally good at masking! We just keep encouraging from afar – we couldn't be with them even if we travelled there.

Just keep encouraging your daughter and her family – maybe send her a meal subscription for a few weeks if you really want to do something. That's what my friend's daughter did for her after surgery down here. It really helped her to have some easy meals to prep.
Sue

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I can’t seem to remind her enough…… I only wish she would slow down……. She went out to feed the horse without 02 one day. Yesterday she went to grocery store with her portable 02 and has picked the kids up from school. She is learning to sit at a stool at kitchen counter to prepare meals. Last night she complained of chest discomfort. Steroid has now worn off so that seems normal. I AM concerned about the kids bringing germs home (they r 6 & 9). I am sorry ur family is dealing with this. Fortunately the kids really bounced back with a few days! My SIL is back to shift work (he had mostly a head cold and stress of wife in hospital who he couldn’t see). My daughter has been given off from work til April. That seems reasonable. Thankfully her MIL is living with them and can help out too. Thanks for ur reply and hope ur family gets better sooner than later!

REPLY
@susie333

I can’t seem to remind her enough…… I only wish she would slow down……. She went out to feed the horse without 02 one day. Yesterday she went to grocery store with her portable 02 and has picked the kids up from school. She is learning to sit at a stool at kitchen counter to prepare meals. Last night she complained of chest discomfort. Steroid has now worn off so that seems normal. I AM concerned about the kids bringing germs home (they r 6 & 9). I am sorry ur family is dealing with this. Fortunately the kids really bounced back with a few days! My SIL is back to shift work (he had mostly a head cold and stress of wife in hospital who he couldn’t see). My daughter has been given off from work til April. That seems reasonable. Thankfully her MIL is living with them and can help out too. Thanks for ur reply and hope ur family gets better sooner than later!

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Thanks for checking in – my family is doing better, just hoping the rest of them will continue to test negative. And the 5 year-old is very unhappy with remote classes, so they are able to convince him to be cautious. I am glad to hear your daughter is improving. One thing about post-Covid effects on the body seems to be that she will have to slow down…but it is best for her to learn on her own what her limits are. As for going out without the O2, she will learn when it is OK or not as well.
Let me know how your daughter progresses these next few weeks. After Covid in 2020, my other daughter had to go on and off the prednisone a few times before her lungs completely healed.
Sue

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thanks for ur encouragement. she has a virtual with her PCP today. he had lowered her 02 to 2L. I'm hoping he won't stop it and let the pulmonologist do that end of jan with her first virtual appt then. all in time I know…..

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