New and undiagnosed

Posted by yvonne55 @yvonne55, Sep 7 8:07am

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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@yvonne55 That must be frightening.
Interstitial lung disease often takes some time and a number of tests to diagnose. Were you referred to a pulmonologist for further testing and evaluation? Here is a little information from Mayo: https://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/diagnosis-treatment/drc-20353113

The second part of your question, about the low O2, is separate matter. Resting sats of 93% are not uncommon with lung issues. The standard for treatment is 88-90% depending on the underlying condition. When you say it "dips" to 85-88%, is that immediately on rising? How long (while you are up) does it take to get above that level? When & how is it being measured?

In answer to your question about being "chained to my bed", unless bed rest was ordered, it is better to get up and move as much as you can! Staying in bed, or in your recliner, or on the couch leads to very rapid deconditioning – your body gets weaker and more unable to recover.

A little about hospital diagnoses – in general, their job is to get you well enough to go home, and to find a tentative diagnosis of your condition if they can. Then, unless it is a comprehensive/integrated system like Mayo, they refer you to community care, but it is usually up to you to make the arrangements. Have you reviewed your discharge orders to see what they recommended for you? Do you have a follow-up appointment with your primary provider or a specialist?

I would like to hear more from you, having trouble getting enough air is really scary.
Sue

REPLY
@sueinmn

@yvonne55 That must be frightening.
Interstitial lung disease often takes some time and a number of tests to diagnose. Were you referred to a pulmonologist for further testing and evaluation? Here is a little information from Mayo: https://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/diagnosis-treatment/drc-20353113

The second part of your question, about the low O2, is separate matter. Resting sats of 93% are not uncommon with lung issues. The standard for treatment is 88-90% depending on the underlying condition. When you say it "dips" to 85-88%, is that immediately on rising? How long (while you are up) does it take to get above that level? When & how is it being measured?

In answer to your question about being "chained to my bed", unless bed rest was ordered, it is better to get up and move as much as you can! Staying in bed, or in your recliner, or on the couch leads to very rapid deconditioning – your body gets weaker and more unable to recover.

A little about hospital diagnoses – in general, their job is to get you well enough to go home, and to find a tentative diagnosis of your condition if they can. Then, unless it is a comprehensive/integrated system like Mayo, they refer you to community care, but it is usually up to you to make the arrangements. Have you reviewed your discharge orders to see what they recommended for you? Do you have a follow-up appointment with your primary provider or a specialist?

I would like to hear more from you, having trouble getting enough air is really scary.
Sue

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I never had a lung issue in my life. I'd driven my granddaughter to the beach, came home and suddenly my back felt on fire! There was no air and everything was going black. I remember the paramedics vaguely. I was given 100% oxygen and tossed in the ct machine. Then to the ICU. I dont recall day 1. Later I was put on an evo? for air. Big tubes with water rushing through. I was there for 4 days as although I could use the commode beside my bed, I would de sat by the time I'd finished and laid back down. Then nasal prongs on 6 litres 02 and put on a Ward. They weaned me off the oxygen completely in the next 5 days and sent home. My own doctor was not involved but just sent info from hospital doctors. They ruled out covid and pneumonia. I was on a ton of antibiotics and prednisone but nothing really made a difference. I had no mucous and white cell count normal. No one knows. All I have is an appt in 3 months for another ct.
My sats are ok if I go very slow. They seem to dip most when I sit back down. I'm now on a cpap which last night I put my oximeter on and my sats were 85.
I did have pneumonia 20 years ago but no one said anything after I recovered and never had an issue.
There were no discharge orders other than I will be called for a ct appointment and I can return to work Sept 18! That's not happening! I have an appointment with my gp tomorrow and have been put on small doses of ativan because I'm panicked to move. Will this get better? Is this as good as it gets? I'm a grandma of 9 and still working in the medical field. Is that done? So many questions. No answers. Thank you for reading!

REPLY
@yvonne55

I never had a lung issue in my life. I'd driven my granddaughter to the beach, came home and suddenly my back felt on fire! There was no air and everything was going black. I remember the paramedics vaguely. I was given 100% oxygen and tossed in the ct machine. Then to the ICU. I dont recall day 1. Later I was put on an evo? for air. Big tubes with water rushing through. I was there for 4 days as although I could use the commode beside my bed, I would de sat by the time I'd finished and laid back down. Then nasal prongs on 6 litres 02 and put on a Ward. They weaned me off the oxygen completely in the next 5 days and sent home. My own doctor was not involved but just sent info from hospital doctors. They ruled out covid and pneumonia. I was on a ton of antibiotics and prednisone but nothing really made a difference. I had no mucous and white cell count normal. No one knows. All I have is an appt in 3 months for another ct.
My sats are ok if I go very slow. They seem to dip most when I sit back down. I'm now on a cpap which last night I put my oximeter on and my sats were 85.
I did have pneumonia 20 years ago but no one said anything after I recovered and never had an issue.
There were no discharge orders other than I will be called for a ct appointment and I can return to work Sept 18! That's not happening! I have an appointment with my gp tomorrow and have been put on small doses of ativan because I'm panicked to move. Will this get better? Is this as good as it gets? I'm a grandma of 9 and still working in the medical field. Is that done? So many questions. No answers. Thank you for reading!

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Yvonne, I can understand that you're afraid to move and feeling like your body betrayed you. It's hard to trust it again especially when you don't have clear indications of what you're dealing with or medical guidance. @sueinmn gave you some great tips and knowledge.

I'm glad you have an appointment with your GP tomorrow. In the meantime, scroll to the bottom of this article from Mayo Clinic
– Interstitial lung disease https://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/diagnosis-treatment/drc-20353113

At the bottom of the page, you will find question to help you prepare for your appointment. Question you should be prepared to answer and question to ask your doctor.

@SusanEllen66 was also asking about sudden low blood oxygen levels related to vasculitis. You may be interested in reading this related discussion:
– Sudden low blood oxygen levels: Anyone else have Vasculitis?: https://connect.mayoclinic.org/discussion/sudden-low-blood-oxygen-levels/

Let us know how your appointment goes tomorrow.

REPLY
@colleenyoung

Yvonne, I can understand that you're afraid to move and feeling like your body betrayed you. It's hard to trust it again especially when you don't have clear indications of what you're dealing with or medical guidance. @sueinmn gave you some great tips and knowledge.

I'm glad you have an appointment with your GP tomorrow. In the meantime, scroll to the bottom of this article from Mayo Clinic
– Interstitial lung disease https://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/diagnosis-treatment/drc-20353113

At the bottom of the page, you will find question to help you prepare for your appointment. Question you should be prepared to answer and question to ask your doctor.

@SusanEllen66 was also asking about sudden low blood oxygen levels related to vasculitis. You may be interested in reading this related discussion:
– Sudden low blood oxygen levels: Anyone else have Vasculitis?: https://connect.mayoclinic.org/discussion/sudden-low-blood-oxygen-levels/

Let us know how your appointment goes tomorrow.

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I havent gone out since coming home from hospital so this is a first. If I find myself out anywhere, and out of breath, what's best? Just find a chair until my normal breathing and sats come up?
Just going to the washroom a few minutes ago and my sats fell to 88. Glad my bed was close!

REPLY
@yvonne55

I never had a lung issue in my life. I'd driven my granddaughter to the beach, came home and suddenly my back felt on fire! There was no air and everything was going black. I remember the paramedics vaguely. I was given 100% oxygen and tossed in the ct machine. Then to the ICU. I dont recall day 1. Later I was put on an evo? for air. Big tubes with water rushing through. I was there for 4 days as although I could use the commode beside my bed, I would de sat by the time I'd finished and laid back down. Then nasal prongs on 6 litres 02 and put on a Ward. They weaned me off the oxygen completely in the next 5 days and sent home. My own doctor was not involved but just sent info from hospital doctors. They ruled out covid and pneumonia. I was on a ton of antibiotics and prednisone but nothing really made a difference. I had no mucous and white cell count normal. No one knows. All I have is an appt in 3 months for another ct.
My sats are ok if I go very slow. They seem to dip most when I sit back down. I'm now on a cpap which last night I put my oximeter on and my sats were 85.
I did have pneumonia 20 years ago but no one said anything after I recovered and never had an issue.
There were no discharge orders other than I will be called for a ct appointment and I can return to work Sept 18! That's not happening! I have an appointment with my gp tomorrow and have been put on small doses of ativan because I'm panicked to move. Will this get better? Is this as good as it gets? I'm a grandma of 9 and still working in the medical field. Is that done? So many questions. No answers. Thank you for reading!

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I’m so sorry you are going through all of this.
My oxygen levels are normal now. The pulmonologist I saw at Mayo Phoenix believes that the ground glass opacity as shown on the CT scan was a direct result of one of the medications I was taking for my Vasculitis. The Rheumatologist is sure it was the methotrexate.

I hope you get some answers soon! Please keep in touch.🌻

REPLY
@SusanEllen66

I’m so sorry you are going through all of this.
My oxygen levels are normal now. The pulmonologist I saw at Mayo Phoenix believes that the ground glass opacity as shown on the CT scan was a direct result of one of the medications I was taking for my Vasculitis. The Rheumatologist is sure it was the methotrexate.

I hope you get some answers soon! Please keep in touch.🌻

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Thank you for replying. How long did it take for your 02 levels to return to normal? I keep hearing from people that have had lung issues that lungs are a slow heal (provided they can heal).

REPLY
@yvonne55

Thank you for replying. How long did it take for your 02 levels to return to normal? I keep hearing from people that have had lung issues that lungs are a slow heal (provided they can heal).

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Actually, it was just a few weeks. I guess it was quick because the medication, methotrexate that caused the inflammation had been stopped about 2 months before.
At my worst I was down to 84. I’m fine now.

REPLY

I'm so happy about that for you!! Today will be my 1st venture out. I guess if I run short of breath to find a chair until it passes.
Little nervous!

REPLY
@colleenyoung

Yvonne, I can understand that you're afraid to move and feeling like your body betrayed you. It's hard to trust it again especially when you don't have clear indications of what you're dealing with or medical guidance. @sueinmn gave you some great tips and knowledge.

I'm glad you have an appointment with your GP tomorrow. In the meantime, scroll to the bottom of this article from Mayo Clinic
– Interstitial lung disease https://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/diagnosis-treatment/drc-20353113

At the bottom of the page, you will find question to help you prepare for your appointment. Question you should be prepared to answer and question to ask your doctor.

@SusanEllen66 was also asking about sudden low blood oxygen levels related to vasculitis. You may be interested in reading this related discussion:
– Sudden low blood oxygen levels: Anyone else have Vasculitis?: https://connect.mayoclinic.org/discussion/sudden-low-blood-oxygen-levels/

Let us know how your appointment goes tomorrow.

Jump to this post

So my appointment was over the phone, I didnt realize it was booked that way until the doctors office called to confirm beforehand. I told him about my sats, and that they are still the same as in hospital. He asked if I had arthritis feeling fingers I said no. He checked me for autoimmune type disease as I once thought I had fibromyalgia. He said there were no markers in my bloodwork to indicate autoimmune anything. He asked am I fatigued. I said no. If I could get up and clean house and shop, I've got energy! He asked if I'm losing weight. No it's the same. Am I coughing? No I'm not. Are my fingers arthritic or clubbing? No they are normal. And no blue nor red fingernails.
Dizzy when up? No.
I just see my sats go into the high 80s no blue lips no gasping for air.
So he did not put me on any new medications.
I'm only on a blood pressure pill and a stomach acid reducer.
So he did say he'd like to see me next week to listen to heart and lungs so he has a baseline to go by. In hospital, all heart lungs were clear when listened to and there was no decreased entry sounds as there was during the beginning of my stay. Any ideas ? Oh and he asked about headaches. No I dont have headaches.

REPLY
@yvonne55

So my appointment was over the phone, I didnt realize it was booked that way until the doctors office called to confirm beforehand. I told him about my sats, and that they are still the same as in hospital. He asked if I had arthritis feeling fingers I said no. He checked me for autoimmune type disease as I once thought I had fibromyalgia. He said there were no markers in my bloodwork to indicate autoimmune anything. He asked am I fatigued. I said no. If I could get up and clean house and shop, I've got energy! He asked if I'm losing weight. No it's the same. Am I coughing? No I'm not. Are my fingers arthritic or clubbing? No they are normal. And no blue nor red fingernails.
Dizzy when up? No.
I just see my sats go into the high 80s no blue lips no gasping for air.
So he did not put me on any new medications.
I'm only on a blood pressure pill and a stomach acid reducer.
So he did say he'd like to see me next week to listen to heart and lungs so he has a baseline to go by. In hospital, all heart lungs were clear when listened to and there was no decreased entry sounds as there was during the beginning of my stay. Any ideas ? Oh and he asked about headaches. No I dont have headaches.

Jump to this post

Hi Yvonne, I'm going to ask a question here –
When you get the low O2 sat readings, is it while you are standing or sitting? How is your hand positioned?
The reason I ask is that home Pulse Oximeters are meant to be read while you are seated with your hand resting on the arm of a chair or a tabletop. They are not necessarily accurate on a hand that is not resting, because there may not be a good connection.
I get wildly different O2 readings depending on the finger I use, and it changes as I change position.
Sue

REPLY
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