The desaturations at rest are concerning, it would be reasonable to take her into the emergency room now. Given your post it seems that she would have very poor reserves, so if things worsen even a little bit she may have profound effects.Another option is to get ahold of her pulmonologist or the person whom is on call for the clinic. He/she would be able to give a more informed opinion based on her unique situation.
51F (pulmonary) under what circumstances should I take mom to the ER? She has chronic respiratory failure - hypoxia of unknown origin being worked up - but over past 3 days she's gotten worse51F, 59, very thin, getting thinner fast, white, USA. non-smoker, non-drinker; no prescriptions. On supplemental oxygen for chronic respiratory failure - hypoxia. Undergoing workup to figure out whats wrong but its taking taking forever. (This is for my mom.) (x-post)Very long story short: formerly vibrantly healthy moms been deteriorating since January. Shes lost over 25lbs since then, has been having daily oxygen desaturations down to as low as 80 whenever she started walking for months and is now on supplemental oxygen. Exhaustive pulmonary testing (including RHC and shunt studies) and cardiac testing (echo with bubble study) all inexplicably normal. The doctors are puzzled, as you can imagine. She looks awful. She does have a few "good" hours in the morning, but it slowly diminished til afternoons she crashed. As of now, "good" morning hours aren't lasting as long and she's crashing earlier in the day when she hits a wall, becomes totally sapped of energy, becomes very weak.At first her oxygen only went down when she was up and about and moving, down as low as 80, thats when she got the order for supplemental oxygen. But past 3 days, it's going down much more often, even at rest. (But it IS intermittent, not constant.)Heres why Im here today seeking advice: What would be a scenario that would mean we should take her to the ER? As of the past 3 days shes feeling worse, now has oxygen desats at rest, and it also is dipping down more and more often than ever before, and something very new - her heart rate keeps dipping a few times a day down into the 50s and occasional 40s (not necessarily when her oxygen is low - sometimes yes thats the case, sometimes when shes on oxygen it happens too. In the past few evenings shes been having severe shortness of breath even when her oxygen is at 100. Although shes been ill for months w/no answers yet, these worsening signs and symptoms have only been happening for about 3 days.Blessed to live in a city with a nationally known excellent medical center. The head of one of the lung hospital lung centers shes been seeing wants her to come back in to see him again for further investigation since the last study (shunt) was normal and they still dont know whats wrong (what the hell else can they test for???), but that conversation with him was last Thursday, before things suddenly got even worse on Friday til now - and who knows when that appt will happen. He's in high demand of course.In the meantime were in a holding pattern, so please can someone give advice on if there are certain signs or symptoms that would trigger us to take her to the ER?