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Trust your knowledge of your own body. Ok, there are people out there who believe everything they see on TV is wrong with them, but if you've had a diagnosed condition for years, please trust what you feel. As I'm writing this my husband of 13 years is in ICU with pneumonia and low blood oxygen saturation.

This started as the flu, or rather "not the flu but a flu-like illness". But, he's on beta blockers for heart arrythmia (which means he can't take decongestants), he has cerebral palsy because he was 3.5 months premature (so he has weak lungs as well), and asthma. Monday night into Tuesday he was up all night coughing despite cough medication and he'd been running a fever of 102-103.5 for several days. His doctor couldn't fit him in until later in the week and recommended he go to the urgent care run by the hospital instead. Several other people in the household had been ill with this 'pseudo flu' over the past week, and so we were unsurprised with that part of the diagnosis.

However, despite his asthma, his weak lungs, the cough and continuous high fever that would not break even with Tylenol and ibuprofen alternated, the Urgent Care doctor refused even to look at the possibility of pneumonia. As a matter of fact he said we were "over reacting" by worrying about it in the first place. He diagnosed it as the pseudo flu and sinusitis, sent him home with a relatively weak antibiotic and Tylenol with codeine for the cough and fever.

36 hours later, He was again running a fever of 103.5 that wouldn't break or even come down much, he was breathing like.. well like a race horse after the race, even just laying in bed, couldn't sit up on his own, and was coughing worse then ever. And to top it off he had that palish/bluish tint to his skin that I know all too well from my own breathing issues.

By the time I convinced him to go to the hospital Thursday morning (yes, it took convincing, he's stubborn like that, and it was sinusitis, remember, the doctor said so) his oxygen saturation was down to 82%!! They did the chest x-ray the urgent care should have (they have the capability to do it in house, which was another reason his Dr. wanted him to go to that one) and he had a diagnosis of pneumonia. Even before that was official the Er Doc was talking about keeping him at least one night for observation because of his oxygen level (which came up to a whopping 88% even on oxygen).

Saturday morning he was still running a fever, his oxygen levels dropped further, and his breathing worsened so they downgraded him to the ICU and ran another x-ray. The pneumonia had worsened despite IV antibiotics. He spent most of Saturday on a bipap (non-invasive ventilator) and 15 liters of oxygen, and this morning they managed to take him off the bipap without his sat dropping below 90%. 90% oxygen saturation on 15 liters still isn't very good though. He can talk, in broken sentences, but can't talk on the phone, and his youngest can't visit him in the ICU, which means I can't visit him for very long. I'm keeping in contact with the nursing staff by phone. He's weak; a man who can, despite his disability, pick up his not quite 8 year old daughter and lift her into his lap can't pick up a paper cup half filled with juice. We don't know if he'll be home in time for her birthday in 2 weeks, though if he's out of the ICU we can move some of the celebration to him. Right now I am upset, scared that he's going to worsen and that I may lose him to this, and trying to deal with two upset (and hence whiny) children as well as get the house ready in case my mother-in-law decides to fly down (she's a neat freak, no excuses person, and things have been.. in an upheaval with everyone sick lately with this 'not-flu').

On Tuesday we strongly suspected he had pneumonia, and with reason. He has many risk factors for it and it's not uncommon for him to get it in such situations. He had a high temperature over a long period of time, he was coughing, he wasn't breathing well. The Urgent Care doctor was not interested however in listening to any of that. If he had, my husband may still have pneumonia, it may even still be worsening, but his oxygen saturation would not have gotten so low because we would have been watching for it. It also would have been a lot easier to talk him into going into the hospital because he wouldn't have been convinced it was only sinusitis and he was 'over-reacting' to his symptoms.

And so I say again, listen to your body. Doctors aren't perfect, and some are down right negligent. If you think a Doctor is wrong.. get a second opinion. And if you think they may be wrong and you feel worse definitely go to the hospital don't wait just because you're afraid they're going to laugh at you. Any Doctor who laughs at you isn't worth the paper his degree is printed on. There's some nasty viruses going around, and if you've anything that can be complicated by it, please, pay attention and get help before things get critical.

Updated by FloridaSNMOM at Fri Feb 18, 2011, 03:11:46 PM

Still in the icu, but they've moved him to a regular canula finally instead of the high-flo. PT is starting today as well and the pulmonologist is hoping to move him to a 'regular' room tomorrow. We're in week two in the hospital though, and hoping he'll be home before week three. At least if he's out of icu our youngest can visit.

Updated by FloridaSNMOM at Mon Feb 21, 2011, 10:48:02 PM

Update 2

Good news at last, he's coming home tomorrow!!  IV antibiotics and we'll have a nurse visiting, plus they're sending him home on oxygen and still on steroids and the whole bit, but he'll be home. 2 weeks in the hospital, half of that in ICU, all over a flu that went into double pneumonia because a doctor didn't take his symptoms seriously.

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Comment Preferences

  •  My first (6+ / 0-)

    this is my first diary, and personal, but it's something that had to be said.

  •  couldn't agree with your (5+ / 0-)

    premise more.

    A few years ago I had some symptoms that I went to my primary care physician about. He thought it might be apendicitis and sent me to the emergency room. 4 hours later I really wanted a friggin' cigarette and the emergency room physicians had taken some blood and basically ignored me for ever ...

    So when one of them spoke to me and told me he didn't think it was apendicitis I convinced myself I felt better and went home. A couple of days later symptoms getting worse - primary care physician and I thought maybe an ulcer - prescribed some meds. 3 days later I called him, told him I was on the way to emergency room where I was either gonna die or get cured - but not leaving until one or the other ...

    Turns out - ruptured appendix. that had been ruptured for 5 days. Was a miracle I was still breathing. Primary care physician was right - emergency room physician didn't take it seriously enough.

    My mom wrote a great book on the church & gay marriage - buy it here!

    by hpchicago on Sun Feb 13, 2011 at 07:36:35 PM PST

  •  Reminds me of the (unfunny) joke ... (4+ / 0-)
    Recommended by:
    irishwitch, RageKage, hpchicago, Lucy2009

    Q:  What do you call the medical student who graduates last in his class?

    A:  Doctor!

  •  absolutely! (2+ / 0-)

    you gotta be your own doctor these days.  Even so this treatment is absolutely appalling.  My gripe about docs is they want you to be really sick before they do anything about it but this is absurd.

    What should the action level be for low O2 sat? Mine is ~97 normally. (I am actually a recovered former asthmatic). You can get your own O2 sat meter from Allegro med for about $80.  Sounds like it wouldn't hurt for you to have appropriate antibiotics on hand either.

    Scientific Materialism debunked here

    by wilderness voice on Sun Feb 13, 2011 at 08:00:27 PM PST

    •  Low O2 sat (3+ / 0-)

      They consider above 94% as "normal range" usually, so yours would be ok. Mine runs from 94-98 usually with moderate copd. Once it drops below 90 is when the hospital staff really gets worried.  But all that's on 'room air'. I've thought about getting an O2 Sat meter, we'll have to talk to his doctor about that, maybe medicaid will even pay for it if we're lucky. We have 3 asthmatic or copd people in the house, including our daughter.

      What's worrying me is that he's on what they consider 100% oxygen (the dial is turned all the way up) of 15 liters and still only barely in the safe (90% or above) range. Add in that his respiration rate has stayed above 30/minute, which is really fast... and things are.. touch and go right now.

      We're actually considering filing a complaint against the urgent care doctor, because he should have at least considered the possibility of pneumonia with the risk factors. At least that way it would be on his record should he do this again and someone ends up injured.

  •  I hope your hubby is feeling much better soon! (7+ / 0-)

    So sorry you are going through this crappy situation.

    Thank you for writing this diary. You are so right. You have to listen to your body and follow your own gut on what needs to be done when it comes to medical issues. Better safe than sorry.

    Long story short, I had a pituitary (base of the brain) tumor, and the resultant weight gain, insomnia, depression, panic/anxiety, etc. All classic symptoms of this type of rare tumor. Went to all kinds of docs, including Endocrinologists, and everybody said "it's all in your head". Take some psych meds, sleeping pills, stop eating twinkies and exercise more. I walked out of office after office for years in tears and enraged with anger.
    Finally I met my Endocrinologist who took one look at me, asked me a few questions and said, "I think you have Cushings" (pituitary tumor). We did the tests, and htat was it. Unfuckingbelievable. After the surgery, and feeling better, I called the Head of the Endocrinology Dept at Cedars Sinai to let her know what I though about her "Lead" endo, as well as sending letters to several other docs. I felt compelled to let them know if they had another patient like me to call me and I'd help get the patient properly diagnosed and tell them what labs to use for tests and what tests to do, since they surely didn't have a freakin clue.

    OK, that's my rant. I can relate to you completely. He's lucky to have a smart woman by his side that loves him and made sure he got care.      :)

    Best to you both, and I think he'll be home for the birthday!!  

    I believe that banking institutions are more dangerous to our liberties than standing armies. Thomas Jefferson

    by Lucy2009 on Sun Feb 13, 2011 at 08:21:38 PM PST

  •  same lack of competence here (5+ / 0-)

    I fell off my horse, broke my arm, smashed my head into an oak fence, passed out 3 times, barfed, obvious trauma.  Doogie Houser tells me at the after hours clinic to come back in the morning for an x-ray on my arm.  I lived through the night surprisingly and hubby took me to the ER where they took one look at my broken face and other damage and whisked me in for a full CAT and 22 x-rays.  The last time I go to urgent care, I say.

    Oh, for Pete's sake!

    by sow hat on Sun Feb 13, 2011 at 08:29:41 PM PST

  •  Sorry this happened. Hope your (3+ / 0-)
    Recommended by:
    RageKage, melpomene1, hpchicago

    husband is feeling better soon.

  •  100% true. Problem is convincing doctors (0+ / 0-)

    While we're often better at diagnosing our own problems -- or, at least in being able to question an ill-fitting diagnosis -- getting professionals to believe you and act on it can be almost impossible.

    My litany:

    12-13 years old, I was losing sight in one eye -- got a ridiculous diagnosis that I was just becoming myopic in the one eye and the other would catch-up. Only when I developed excruciating inflammation a couple of years later if the doctor admit it was more serious. Sent me to a retinal specialist, who diagnosed total detachment.

    I Had surgery -- various complications and several procedures later, my sight was coming back in that eye. I could even read some small print in the newspaper. Then, I noticed it was getting worse again. I told the doctor, who dismissed that, claiming it was the same as the last time he'd seen me. That may or may not have been true -- I don't think it was -- but it had gotten better and then worse.

    Some months later, after constantly complaining about it, I convinced my mother, when I couldn't even read the largest headline. Then, the doctor looked a little harder -- even though the usual test showed normal eye pressure, he tried a different instrument and discovered that my pressure was almost through the roof. I had developed a severe, acute glaucoma in that eye -- a not unheard of complication of both the retinal surgeries and the steroid drops I'd been given.

    Even now, I'm not sure I'm getting great treatment for my bad eye -- even though I'm seeing probably the leading specialist in the country. My eye pressure is normally well-controlled with medicine, so much so that it's usually almost identical to my healthy eye, except that I have little usable vision left in the bad eye.

    The pressure has been creeping up over the last year. I was alarmed six months ago when it was 19 -- and I was experiencing new levels of discomfort. My doctor dismissed the idea that I could actually feel the difference. at my semi-anual check-up last month, the pressure was up to 21, which is the upper limit of normal -- but not normal for me.  I am sure this is too high for me and that I need more aggressive treatment -- either new medicine or more surgery, but my doctor is satisfied with the number. NO clue what to do now.

    Another example -- in law school, I injured my knee. The school doctor said the pop I felt was my kneecap dislocating and popping back. I didn't buy it. Got a second opinion over break -- doctor speculated it was torn cartilage, but wouldn't order an MRI because of expense. A year later, I hurt my other knee and the same school doctor again dismissed it. When my knee gave out on my a month later just walking about, and then my knee wouldn't straighten out, it was obvious that it was more serious.

    While rehabbing the second knee from ACL reconstruction and cartilage repair, I finally got an MRI on the first knee and learned that my ACL was also completely torn there, along with cartilage. Because my rehab hadn't gone so well, and since my non-surgical knee was holding up, he suggested I not have surgery on that one. Bad choice. Really hurt it less than a year later, while dancing -- tearing more cartilage and leading to severe arthritis in that knee.

    So, sometimes having the right diagnosis isn't even enough.

    Coming Soon -- to an Internet connection near you:

    by FischFry on Mon Feb 14, 2011 at 08:48:13 AM PST

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