Quote:
Originally Posted by AnnieB3
Alice, I love sarcasm. What I don't love is a pulmonologist who thinks that 66% oxygen saturation while sleeping during my crisis doesn't even warrant a Bi-Pap or C-Pap. No way would she think I should have one now. Yes, I'm getting a second opinion. 
When I've had the overnight oximetry done, my oximeter corresponds exactly to theirs. And that reading of 85% was while lying on my bed, not moving, perfectly hydrated, no extremes of temperature and with new batteries in the oximeter. That combined with my extreme shortness of breath, which may or may not be MG, is what is concerning. I can't sleep during sleep studies or I'd do that. I appreciate all of your feedback.
Annie59, I'm not an airliner but I sort of feel like I've been hijacked. Not that your questions don't need answers too. 95%, like Alice inferred, can be okay for some and not for others. It all depends upon you overall health and exactly what is going on. If you can find a good pulmonologist who will do arterial blood gases, as well as breathing tests, that would be best. Have they done a chest CT? Have you been assessed by a cardiologist? Shortness of breath can be from more than one reason, if when you have MG. When they do oximetry in the ER, make sure you are walking around doing it. MG is all about weakness upon exertion and if your MG is doing worse, those numbers will tank while walking or shortly after stopping (after your heart stops going higher). When MG is bad and oxygen is relatively lower, the heart will beat faster to get you more oxygen. So it's not only the oxygen saturation but what your heart is doing (at rest). Good ER docs will also do a beside spirometry or at least a peak flow meter. Do you have a peak flow meter? Knowing what your "normal" readings are will help them to determine what is too low. Alice had good advice about getting the best doctors you can, who will then be your "backup" when you do have to go to the ER.
Jana, I think everyone needs to be specific - now that there are two of us named Annie - which one of us they are referring to. I think you posted that for Annie59. Thanks for the info for Annie59.
I would appreciate any other feedback anyone would have. Thanks.
Annie |
Annie,
I am glad that you are getting a second opinion, and I would not hesitate to get a third/fourth or even fifth one if needed.
over the years of my illness, and through encounters with patients in the real world and in cyberspace, I gradually realized that neuromsucular respiratory medicine is one of the blackest holes of medicine. I can't understand how this came about, but it's a reality we have to live with (and hopefully correct).
With me they eventually went from not giving me any respiratory support to giving me two respirators (one for back up , after they realized that if I don't have a functioning respirator with me, I could actually die).
when they last checked my respirator memory, they told me that I "only" had one hour over the last week in which I could not breath at all on my own (they could see that I could not even trigger the respirator, which means near-paralysis of the respiratory muscles ). I do not want to think what would have happened if I did not have my respirator with me during that one hour.
From my experience, very few pulmonologists (including very good ones) understand the importance of NIV. In retrospect, there is no doubt in my mind that I should have been given a Biapap long before and not only after I nearly died, or started having episodes of acute respiratory failure that could no longer be ignored (by pulmonologists).
Not that it made much of a difference for the neurologist in charge of my care at that time, who still thought I was not breathing to the extent that my vital capacity could no longer be measured, because I was afraid to go home (or some other idiotic explanations of that sort), but like I said, I try as much as I possibly can, not to put my care in the hands of those people any more (although, unfortuately, you can't always know what they really think, until it is put to some test. they can appear to be completely normal reasonable people until you realize that there is no doubt in their mind that the world is flat and there is nothing you or any one can do to make them change their mind).
Breathing is a very essential activity of life. It's very hard to do anything if you can't breath properly. it's true that it doesn't endager your life immadiately, as if you are relatively young and healthy you have good reserves to keep some reasonable gas exchange going on, even if you have servere weakness of your respiratory muscles. Even you vital capacity may be preserved and be normal or near-normal if you have good and compliant lungs.
But, then all your efforts will be put into this one very essential activity- breathing. you will not be able to do much other then that. you will fight and work hard for every breath, like a person drowning in the ocean, part of the time hoping that you will be able to keep on doing it and save you life and part of the time hoping that this agony will end.
And many physicians will (very wrongly) think that it is not possible to maintain such gas exchange with significant respiratory muscle weakness.
and also (as I have recently found out) patient with myasthenia may have abnormally low baseline CO2 levels due to impaired ability of their muscles to metabolize the CO2 produced in them (my baseline CO2 level for instance is 30, which explains why I start experiencing symptoms of CO2 retention with a "normal" level of 40).
none of the physicians I have met so far (pulmonologists or neuroloigsts) are interested in any of this, and when I told them about my findings and the way it may affect management of patients with MG (as their CO2 levels may appear as if they are hyperventilating and having an "anxiety" attack, when in fact they are doing very poorly) they just shrugged their shoulders and told me that CO2 levels are not important and what matters is how the patient is doing clinically.
No doubt they are right, and that's why in that one time I was convinced (by my very concerned pulmonologist) to come to the ER, and the resident there noticed I could hardly breath, they "safely" discharged me home, when they were reassured by my CO2 level of 45. (even though my bicarbonate levels clearly showed of compensated respiratory acidosis, which means that I have been having CO2 levels that were high for me, for a significant number of hours, fully correlating with how I was doing clinically).
I didn't want to tell them (as it wouldn't make any difference any how) that I sent a patient of mine to gastroenterology (where they diagnosed colon cancer) because his Hgb. was 13.0 (which is completely normal, but not for someone who has a Hgb. of 16.0 at baseline), or dehydration, when I was told on the phone that my patient's Hgb. was 12.0 (as I knew she never went over 10.0, in the six years I have been following her).
survival with this illness, unfortuately means an endless struggle with the illness itself and even more so, with those that are supposed to help.
The gap between their notion of what this illness is, and what it really is, is so large that I am not sure we will ever be able to cross it.