Yeah, it was really weird. I got sick in December '08, and in retrospect, it was probably my first pneumonia, but we don't have any evidence. Let me put it this way: I was so sick that I don't remember being sick.
February '09 I had my first documented pneumonia. Well, it happens, you don't think much of it, you get over it. Then a little over a month later I had it again. My GP told me to see the lung doctor. Turns out there was only one practice in Las Cruces that did not only do sleep studies. And they had a 30 day wait for new patients, which makes zero sense to me. So I wait and finally see the doctor, who was any number of rude words that I shouldn't use on someone else's blog. My wife and I go in with four sets of x-rays: during and after for the two illnesses, radiologist reports, and bloodwork. Radiologist says pneumonia. Bloodwork says massive infection. You can see the shadows on the x-rays. Twit doctor holds up the x-rays TO THE OVERHEAD FLUORESCENT LIGHT! Flips back and forth between them so fast that there's no way he can be doing a valid comparison. And there's a proper light box in the hallway. There's also a sign in the exam room threatening defenestration if you use your cell phone in the exam room: the doctor took at least two calls while in the room with us.
He then proclaims "I don't see pneumonia. I think it was severe bronchitis." With a 103f fever?! He orders a PFT for Monday, this was a Friday.
So pneumonia #3 hits three days after I see him. My wife is an astronomer and worked that weekend: after working from before sundown to after sunrise for two days, exhausted, she had to drive 100 miles back to 'Cruces to take care of me. I survive it (obviously), and fire the lung doctor. By this time my wife has been doing research and found that I probably have CVID, Common Variable Immunodeficiency, or hypogammaglobulenimea (her father was a pathologist). But my GP won't order an immuneglobin workup. I don't expect him to treat me, but he could at least order the blasted test which might speed things up down the line. He says I should see a immunologist. THIRTY DAY WAIT.
And while waiting for to see the immunologist, I had pneumonia a fourth time. Including the previous December, probably five times. I'm recovering from the 4th, and we get word that my wife's mother is diagnosed with terminal lung cancer and not given much time, so wife flies out to Maine to see her for the last time. I can fend for myself, we play Warcraft together online and talk via speakerphone when she gets back to her hotel at night. GP says I should find another lung doctor and get a bronchoscopy to make sure that I don't have any permanent lung scarring. (the name eludes me for the moment: bronchiectasis?)
There's nothing to be found in Las Cruces, so I look to El Paso. Half an hour or so away, big city. I find a practice on the west side, so I don't have to drive all the way through town. I choose a doctor with a foreign name: foreign doctors have to pass the boards in their native country, then again here. I've found that serves me well. So I call them up, give them the whole litany of what I've been through, and ask for an appointment with Dr. A, expecting to be told 30 day wait. They can set me up with him within like 2 days. Mind goes poof
I meet Dr. A. Present him with three sets of x-rays and labs, explain everything, tell him my GP thinks I need a bronchoscopy, and Dr. A. agrees. Ask him how long to schedule it (I've never had one previously), expecting 30 days: "How about Friday?" Mind goes poof again. Unfortunately spousal unit is still in Maine, but we schedule it as soon as she returns.
End result of lung study was no damage, and biopsies found bacteria that was getting ready to burst forth into another pneumonia infection that was resistant to the fourth series of antibiotics but not the third, and since it was cultured, we knew exactly what it was vulnerable to, so another course of antibiotics put paid to that. And now I have a a set of lungs that would be the envy of most 80 year olds, which would be great if I weren't in my 50s.
When I finally got to see the immunologist, he wanted to blame the illnesses on allergies! My wife proverbially beat him about the head and shoulders until he ordered an immuneglobin panel, which showed my type-G to be 150, whereas the normal range is 700-1400.
I now do weekly infusions of immuneglobin: four needles in my abdomen for about 90 minutes, and I'll be doing it for the rest of my life. I've now done it over 500 times. The condition is genetic, and it has probably affected me for all my life: it just happened to kick in to high gear eight years ago. Uncommon, but not unheard of. No one else in my family or immediate relations has it. With treatment, I'm now actually healthier than I was before the illnesses, but my lungs are kinda trashed, and we have to be pretty careful. I'm prone to sinus infections and we're very careful to keep on top of flu and pneumonia vaccinations, even though the evidence as to how effective they are is mixed.
And that is the joy of my life. At least since '09.
Best of luck with your joy! Fortunately I did a full cardio workup a few years ago and the doctor said my heart was in great shape, so at least I'm fortunate in that regard, at least for now.
![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
timeasmymeasure
no subject
Date: 2017-07-27 05:59 am (UTC)Yeah, it was really weird. I got sick in December '08, and in retrospect, it was probably my first pneumonia, but we don't have any evidence. Let me put it this way: I was so sick that I don't remember being sick. February '09 I had my first documented pneumonia. Well, it happens, you don't think much of it, you get over it. Then a little over a month later I had it again. My GP told me to see the lung doctor. Turns out there was only one practice in Las Cruces that did not only do sleep studies. And they had a 30 day wait for new patients, which makes zero sense to me. So I wait and finally see the doctor, who was any number of rude words that I shouldn't use on someone else's blog. My wife and I go in with four sets of x-rays: during and after for the two illnesses, radiologist reports, and bloodwork. Radiologist says pneumonia. Bloodwork says massive infection. You can see the shadows on the x-rays. Twit doctor holds up the x-rays TO THE OVERHEAD FLUORESCENT LIGHT! Flips back and forth between them so fast that there's no way he can be doing a valid comparison. And there's a proper light box in the hallway. There's also a sign in the exam room threatening defenestration if you use your cell phone in the exam room: the doctor took at least two calls while in the room with us. He then proclaims "I don't see pneumonia. I think it was severe bronchitis." With a 103f fever?! He orders a PFT for Monday, this was a Friday.
So pneumonia #3 hits three days after I see him. My wife is an astronomer and worked that weekend: after working from before sundown to after sunrise for two days, exhausted, she had to drive 100 miles back to 'Cruces to take care of me. I survive it (obviously), and fire the lung doctor. By this time my wife has been doing research and found that I probably have CVID, Common Variable Immunodeficiency, or hypogammaglobulenimea (her father was a pathologist). But my GP won't order an immuneglobin workup. I don't expect him to treat me, but he could at least order the blasted test which might speed things up down the line. He says I should see a immunologist. THIRTY DAY WAIT. And while waiting for to see the immunologist, I had pneumonia a fourth time. Including the previous December, probably five times. I'm recovering from the 4th, and we get word that my wife's mother is diagnosed with terminal lung cancer and not given much time, so wife flies out to Maine to see her for the last time. I can fend for myself, we play Warcraft together online and talk via speakerphone when she gets back to her hotel at night. GP says I should find another lung doctor and get a bronchoscopy to make sure that I don't have any permanent lung scarring. (the name eludes me for the moment: bronchiectasis?) There's nothing to be found in Las Cruces, so I look to El Paso. Half an hour or so away, big city. I find a practice on the west side, so I don't have to drive all the way through town. I choose a doctor with a foreign name: foreign doctors have to pass the boards in their native country, then again here. I've found that serves me well. So I call them up, give them the whole litany of what I've been through, and ask for an appointment with Dr. A, expecting to be told 30 day wait. They can set me up with him within like 2 days. Mind goes poof I meet Dr. A. Present him with three sets of x-rays and labs, explain everything, tell him my GP thinks I need a bronchoscopy, and Dr. A. agrees. Ask him how long to schedule it (I've never had one previously), expecting 30 days: "How about Friday?" Mind goes poof again. Unfortunately spousal unit is still in Maine, but we schedule it as soon as she returns. End result of lung study was no damage, and biopsies found bacteria that was getting ready to burst forth into another pneumonia infection that was resistant to the fourth series of antibiotics but not the third, and since it was cultured, we knew exactly what it was vulnerable to, so another course of antibiotics put paid to that. And now I have a a set of lungs that would be the envy of most 80 year olds, which would be great if I weren't in my 50s. When I finally got to see the immunologist, he wanted to blame the illnesses on allergies! My wife proverbially beat him about the head and shoulders until he ordered an immuneglobin panel, which showed my type-G to be 150, whereas the normal range is 700-1400. I now do weekly infusions of immuneglobin: four needles in my abdomen for about 90 minutes, and I'll be doing it for the rest of my life. I've now done it over 500 times. The condition is genetic, and it has probably affected me for all my life: it just happened to kick in to high gear eight years ago. Uncommon, but not unheard of. No one else in my family or immediate relations has it. With treatment, I'm now actually healthier than I was before the illnesses, but my lungs are kinda trashed, and we have to be pretty careful. I'm prone to sinus infections and we're very careful to keep on top of flu and pneumonia vaccinations, even though the evidence as to how effective they are is mixed. And that is the joy of my life. At least since '09. Best of luck with your joy! Fortunately I did a full cardio workup a few years ago and the doctor said my heart was in great shape, so at least I'm fortunate in that regard, at least for now.