Normally I find it very difficult to discuss personal issues, but at this point, my doctors have no idea why I'm having an issue and my frustration is mounting. It is clear all of them are trying, but there are no indicators yet what the diagnosis might be. What I am hoping for is that one of you TUGgers has known someone with a similar issue and set of circumstances who has found an answer, or is at least hot on the trail. I will not go into all the nitty gritty details of my treatment so far, since that would be quite tedious, but I am a senior female, in good health (only typical aging problems).
Last March, I was hospitalized for 6 days with pneumonia. At discharge, I was given a pulseoximeter to monitor my oxygen saturation levels, to hopefully spot any issues early on. Right after getting home. I began using the oximeter, and regularly got lower than normal oxygen saturation readings but only after some kind of exertion (at rest, all was normal). Having had pneumonia several times in my life, I initially attributed those readings to just the difficulty of recovery following my illness. It didn't take long for me to realize the there was no improvement. I did, and still do, have home oxygen to use as needed.
About a month later, breathing issues returned, and I was directed to the ER. There, it was determined I had a pulmonary embolism, with additional clots my leg. So, it was back to the hospital for a couple of days, followed by blood thinners at home.
From the beginning of April until now, I have been under the care of a pulmonologist and a cardiologist. And starting in May, after the occurrence of the blood clots, a hematologist joined the team treating me. I have undergone all kinds of tests as prescribed by the different specialists. The results of all the testing have indicated everything is working normally! Heart, lungs, and blood. Which is very good news, except, I still have a problem. All the doctors have indicated they have no idea what is going on, why my oxygen levels drop with exertion.
So, in December, I was referred to a university hospital about an hour away to see if anyone there can figure out what's going on. The earliest appointment I could get is later this month. Meanwhile, I continue to have breathing issues with exertion. And by exertion, I mean doing things like personal hygiene (showers are a real challenge), walking into the grocery, just eating or talking sometimes. When I measure the levels, they seem to be getting lower, more fr3equently, for a given activity, as time passes. My frustration is increasing, though I do appreciate the doctors have worked hard to figure out what the problem is. It's just hard to be so inactive. What really hurts is I've been unable to fly anywhere for most of 2024, and still have that restriction. Only short driving trips are permitted, unless there are frequent stops, which i hate; I want to get there!
Does anyone have any ideas what might be going on? Know that I continue to seek medical care, and will continue to do so, but I'd also like to be able to contribute to my care if possible, even if that suggestion or thought proves to be wholly worthless ultimately.
Thank you!
Last March, I was hospitalized for 6 days with pneumonia. At discharge, I was given a pulseoximeter to monitor my oxygen saturation levels, to hopefully spot any issues early on. Right after getting home. I began using the oximeter, and regularly got lower than normal oxygen saturation readings but only after some kind of exertion (at rest, all was normal). Having had pneumonia several times in my life, I initially attributed those readings to just the difficulty of recovery following my illness. It didn't take long for me to realize the there was no improvement. I did, and still do, have home oxygen to use as needed.
About a month later, breathing issues returned, and I was directed to the ER. There, it was determined I had a pulmonary embolism, with additional clots my leg. So, it was back to the hospital for a couple of days, followed by blood thinners at home.
From the beginning of April until now, I have been under the care of a pulmonologist and a cardiologist. And starting in May, after the occurrence of the blood clots, a hematologist joined the team treating me. I have undergone all kinds of tests as prescribed by the different specialists. The results of all the testing have indicated everything is working normally! Heart, lungs, and blood. Which is very good news, except, I still have a problem. All the doctors have indicated they have no idea what is going on, why my oxygen levels drop with exertion.
So, in December, I was referred to a university hospital about an hour away to see if anyone there can figure out what's going on. The earliest appointment I could get is later this month. Meanwhile, I continue to have breathing issues with exertion. And by exertion, I mean doing things like personal hygiene (showers are a real challenge), walking into the grocery, just eating or talking sometimes. When I measure the levels, they seem to be getting lower, more fr3equently, for a given activity, as time passes. My frustration is increasing, though I do appreciate the doctors have worked hard to figure out what the problem is. It's just hard to be so inactive. What really hurts is I've been unable to fly anywhere for most of 2024, and still have that restriction. Only short driving trips are permitted, unless there are frequent stops, which i hate; I want to get there!
Does anyone have any ideas what might be going on? Know that I continue to seek medical care, and will continue to do so, but I'd also like to be able to contribute to my care if possible, even if that suggestion or thought proves to be wholly worthless ultimately.
Thank you!
