Connect
← Return to New and undiagnosed
Discussion
Comment receiving replies
@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
Replies to "@yvonne55 That must be frightening. Interstitial lung disease often takes some time and a number of..."
Connect
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!