Hi there! I’m new to the group. I’ve had asthma all of my life though it seems to vary in its severity. I was hospitalized for a few days last May due to low oxygen saturation. I’ve struggled more than “normal” since then though my oxygen saturation levels stay at 93 and above. Currently, I am breathless doing anything and am so tired from just talking and walking. I’m a very active person so this is really taking a toll on my mental health as well.
I’m confused as to why my oxygen saturation level would be good at 97/98 but I’m feeling super short of breath, even after treatment. I’m sure I’m not the only person with this experience and am hoping for some insight from others.
Best to you all.
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sullivan776
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You need to see your pulmonologist for a diagnosis. It will probably require quite a few tests, including one of the big pulmonary function tests.
In the meantime, sit down and write down everything you can think of that may be related.
When did this begin? Has it worsened over time? What makes it better? Worse? Describe specific things you are doing — I.e., standing at the sink washing dishes, grocery shopping, rushing to catch my bus, etc. Does it happen regularly during the day and night? Worse at night?
There can be a number of possible explanations. I went through this and it took my doctors (I have an entire team at a major med center) 6 years to figure out. My problem is rare and rather than scare you (because explanations could be as simple as new allergies to chemicals in household products or the fragrance in the soap and detergents you use), please make an appointment with your pulmonologist ASAP.
If the tests don’t turn up anything, don’t settle — keep a daily journal of every symptom, activity, where etc, and seek a second opinion or repeat the tests in a few months. Stay on top of it. Keep discussing it with your doctors and demand more/better answers.
IF YOU DON’T ADVOCATE FOR YOUR HEALTH, AND STAY ON TOP OF THINGS, WHO WILL?
Good luck! Please write back and let us know how you are doing.
Thank you for the reply. Keeping a journal is great advice. I will start that today. I slept through the night for the first time in what feels like forever! I usually wake up and need my nebulizer. I woke up wheezing but it wasn’t bad enough to interrupt my sleep.
I went to a pulmonologist about a month ago and had bloodwork done two days ago. I have an appt on Monday with my general practitioner. I can see that my CO2 levels are high and I have some other numbers that are out of whack too. I’m hoping Monday is the beginning of figuring this out. I’ll keep you updated. Thanks!
My Dr. explained to me that sometimes even when you are having an asthma attack (even a more severe one) oxygen levels may remain stable but heart rate will rise to compensate and pump oxygenated blood more quickly to the rest of the body.
In my case I’ve had some very severe asthma attacks and sometimes I may even black out while my oxygen levels remain >93. But my heart rate will run >130 at least.
Thank you! That makes sense that my heart would be working overtime to get my oxygen level up. I have a resting heart rate in the high 40s/low 50s and when I walk down the stairs from my bedroom to my kitchen, my heart rate goes up to about 110. It’s just not right and I’m looking forward to figuring it out so I can have my life back.
My oxygen is 97% but it's difficult to get a deep breath most of the time. My doctors don't know why my oxygen is so high, but I cannot breathe. I have had double pneumonia twice in six months, and my breathing has become more difficult but my rate is still 97%. If the doctors don't know, how can I understand what is happening to me?
What are your peak flows? Any triggers that cause the difficulty? What results have you been getting from your pulmonary function test etc?
Anytime you are trying to describe a medical problem, it’s important to provide as much data as possible. Do you keep a daily journal with your peak flows, known or possible triggers/symptoms and response to any medication/environmental changes etc?
All of those things can make it easier for you and your physicians to arrive at a diagnosis.
But here’s the real-life answer to your question - I have a very rare condition that took 5 years to diagnose, and ultimately the diagnosis had to be confirmed by NIH. My doctors admitted they didn’t know what was causing my problems, but here’s the crucial point - they told me they were determined to figure it out and work with me to do so.
I’ve also been in what sounds like your situation, when a doctor said he didn’t know and instead of helping find someone who did, and committing to learn as much as possible, he had me on a dangerous level of medication. That taught me to be a lot more assertive.
I’d have a “come-to-Jesus” meeting with the doctor, tell him/her exactly why you are concerned and then ask him/her directly if they can refer you to a local medical school or researcher who may be able to
come up with a diagnosis. Get a copy of all your test results on a DVD, and of your electronic medical record/chart and notes. And make some appointments.
The reality check is that diagnosing a lot of problems is not like taking a couple of symptoms, putting them in the computer and then out pops the correct one. It is a long slog - ruling out all sorts of possibilities until ultimately they hit on one that fits best. Then they try a treatment protocol (or 5) and see if any of them make you better (or worse), adjust their assumptions and ideas and go to the next thing on the list.
Most enlightening, but I don't think the doctors know how to give me an answer.
What Meds are you taking? I was doing fine when I stopped taking Pulmacort for a PFT and didn't go back on it. Then 3 weeks later at my last appointment they got all scared at my numbers, which were no different from 15 years ago, so they changed my drugs. I was having a mild allergic reaction to Pulmacort so they switched me to Sybicort which nearly killed me. Believe it or not, it was Adderall that saved me. After all it was initially made as an Asthma drug by its creator for himself. When I first started taking it I was "cured". Everything went away and you'd never know I had a problem. But I was forced to take a sabbatical from it and when I returned it no longer worked as miraculously as it first did. But in a small way it helped save me this last time. I'm not as good as I was, but a heck of a lot better.
They've filed the paperwork for NUCALA and I hope to be starting that soon. They're about 3 months late. But then I'm the only one suffering during the delay.
Make sure it's not the drugs and not you. After all they love throwing drugs at the symptoms, but not at the problem.
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