1. < Lung Health

New and undiagnosed

Posted by yvonne55 @yvonne55, Sep 7, 2022

Just spent 10 days in hospital. Never had a lung problem but did have GERD briefly. Suddenly couldn't breathe. No air! Blacked out. In hospital received 100% oxygen. Slowly weaned and sent home. Got a "maybe" diagnosis of Interstitial lung disease. Im on no oxygen. Drs said I didnt need it. At rest 02 is 93%. Getting up out of bed and 02 dips 88, 85 %. Drs seem unconcerned. I'm scared! Am I chained to my bed for life? Are my 02 sats ok to go that low as long as they come up?

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Mentor
Sue, Volunteer Mentor | @sueinmn | May 10, 2023
In reply to @yvonne55 "I went to my pulmonologist today and he said my lung function test was good and..." + (show)
@yvonne55

I went to my pulmonologist today and he said my lung function test was good and my 6 minute walk test was good however the CT scan I had last week compared to the one I had 3 months ago was still basically the same. The ground glass opacities are much less and he is pretty sure that it was ours due to aspiration pneumonia from GERD. He said the scarring has not changed. Now I don't know if scarring gets better with lungs ? Or stays the same or gets worse. But he said it's the same as in the last CT. Having said that he has decided to err on the side of caution and is sending me to a lung scarring specialist. And he wants my lung function test and CT repeated in 6 months. Is anyone familiar with lung scarring and does it generally get better? I think just the thought of going to another specialist, when I thought this nightmare was over, of course worries me. I'd never even heard of a lung scarring specialist. Anyone? Thanks in advance 🙂

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Hi Yvonne - I'm glad to hear the doctor is happy with your progress - I bet it's a big relief for you.

You asked "I'd never even heard of a lung scarring specialist. Anyone? " Well, if you had asked my Dad, he would have said there's a specialist for everything. At one point he asked the doctor if he had to see a different doctor for his left shoulder than the right one. I would say it's not exactly a separate specialty, just someone he knows with more experience than he has in evaluating scarring. I think he may be concerned because you had such a difficult case, and wants to make sure he isn't missing anything.
As to whether scars change, my scarring after an infection never went away altogether, although the nodules eventually disappeared. On the other hand, after Covid my daughter's scarring has gotten better.

I don't think this is cause for anxiety - more like cause for celebration because your doc is so thorough!
Sue

REPLY
2 replies
yvonne55 | @yvonne55 | May 11, 2023
In reply to @sueinmn "Hi Yvonne - I'm glad to hear the doctor is happy with your progress - I..." + (show)
@sueinmn

Hi Yvonne - I'm glad to hear the doctor is happy with your progress - I bet it's a big relief for you.

You asked "I'd never even heard of a lung scarring specialist. Anyone? " Well, if you had asked my Dad, he would have said there's a specialist for everything. At one point he asked the doctor if he had to see a different doctor for his left shoulder than the right one. I would say it's not exactly a separate specialty, just someone he knows with more experience than he has in evaluating scarring. I think he may be concerned because you had such a difficult case, and wants to make sure he isn't missing anything.
As to whether scars change, my scarring after an infection never went away altogether, although the nodules eventually disappeared. On the other hand, after Covid my daughter's scarring has gotten better.

I don't think this is cause for anxiety - more like cause for celebration because your doc is so thorough!
Sue

Jump to this post

Thank you Sue! Loved your dads comments about having a specialist for everything.
I had covid in Jan of 2021 and 3 days of no smell or taste and it was over. This didn't hit till Aug/22. I had severe pneumonia back in 1998 which brought my priest in giving me Last Rites so I think there was scarring from that. But my pulmonologist couldn't tell because my first cts in August were an inflammatory "mess". I know they queried Interstitial LD which , underneath it all has been my main concern. Hearing my scarring had not gotten worse was great!! It had me thinking I could rule out ILD. But maybe not? This new specialist is in yet another city. I thought he'd just be sending her pics of my scans. But no. So how DO these specialists look at my scars?
Hes also adamant I keep taking my pantaprazole and sleep on a wedge.

REPLY
yvonne55 | @yvonne55 | Dec 12, 2023
In reply to @sueinmn "Hi Yvonne - I'm glad to hear the doctor is happy with your progress - I..." + (show)
@sueinmn

Hi Yvonne - I'm glad to hear the doctor is happy with your progress - I bet it's a big relief for you.

You asked "I'd never even heard of a lung scarring specialist. Anyone? " Well, if you had asked my Dad, he would have said there's a specialist for everything. At one point he asked the doctor if he had to see a different doctor for his left shoulder than the right one. I would say it's not exactly a separate specialty, just someone he knows with more experience than he has in evaluating scarring. I think he may be concerned because you had such a difficult case, and wants to make sure he isn't missing anything.
As to whether scars change, my scarring after an infection never went away altogether, although the nodules eventually disappeared. On the other hand, after Covid my daughter's scarring has gotten better.

I don't think this is cause for anxiety - more like cause for celebration because your doc is so thorough!
Sue

Jump to this post

Hello Sue!
Been thinking of you. Just got results from my latest ct scan and pulmonary function test. The function test was "great". 6 min walk was "perfect". Lung scars are stable and were post infectious. They do not suspect ipf or anything like that. Im working full time but unfortunately not in my chosen loved field of health care. Dr suggested getting out as hes not sure how strong my immune system is and care homes and hospitals are the germiest places. So I was working with handicapped adults run by staff but not enough hours so I do that and work at a major supermarket. I'm always on the run. And doing a lot of stair work. No passing out nor dizziness. Respirologist still wants me to lose 40 lbs but 60 are off now. The ground glass opacities and nodules are gone. I did catch a cold but had no breathing problems. My hair is slowly growing back. I asked the pulmonologist if taking collagen is safe but he admitted he didn't know. I was taking it for 2 years before my pneumonia and it worked wonders. My gp didnt know either.
Does anyone know if collagen is safe for lungs that have had a beating but come back?
The last time I took my 02 Sue it said 98%. I then put it away permanently. THANK YOU for all of your words of encouragement especially when I was in panic mode!! 🙏🙏

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 12, 2023
In reply to @yvonne55 "Hello Sue! Been thinking of you. Just got results from my latest ct scan and pulmonary..." + (show)
@yvonne55

Hello Sue!
Been thinking of you. Just got results from my latest ct scan and pulmonary function test. The function test was "great". 6 min walk was "perfect". Lung scars are stable and were post infectious. They do not suspect ipf or anything like that. Im working full time but unfortunately not in my chosen loved field of health care. Dr suggested getting out as hes not sure how strong my immune system is and care homes and hospitals are the germiest places. So I was working with handicapped adults run by staff but not enough hours so I do that and work at a major supermarket. I'm always on the run. And doing a lot of stair work. No passing out nor dizziness. Respirologist still wants me to lose 40 lbs but 60 are off now. The ground glass opacities and nodules are gone. I did catch a cold but had no breathing problems. My hair is slowly growing back. I asked the pulmonologist if taking collagen is safe but he admitted he didn't know. I was taking it for 2 years before my pneumonia and it worked wonders. My gp didnt know either.
Does anyone know if collagen is safe for lungs that have had a beating but come back?
The last time I took my 02 Sue it said 98%. I then put it away permanently. THANK YOU for all of your words of encouragement especially when I was in panic mode!! 🙏🙏

Jump to this post

Hugs! and more hugs, Yvonne. You have made remarkable progress.

Wow, all that activity has really helped with the weight loss I bet - and overcoming your anxiety is great news. Yes, lungs recovery is slow, but you seem to have made it.

I am so happy for you - and that you tossed that Pulse Ox in the drawer.
Please keep me updated on your progress.
Sue

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