Thursday, April 12, 2007

Sometimes, *Not Pneumonia* Is Not Good News

Sorry, smokers. Hey. He's a lung doc. What can we expect? I mean, this is what he's SUPPOSED to put on his exam room walls!

I'm starting to feel a tiny bit better, lung-wise. The pain patches and hot baths and sleeping sitting up are helping. But...I had to do a lot of physical work Tuesday and that was not good. It wore me out, bad. I'm still trying to recover from it. There's this constant headache, much worse than the usual chronic one, and it just won't go away for nuthin. Fever, sweats, shakes, chills. Weak and exhausted.

I saw the lung doc Monday, and he ordered a new higher-resolution cat scan, and a breathing test, and some bloodwork. I do the hospital tests on Monday, the soonest available slot.

He wants those done before doing a bronchoscopy. Good. That's a sort of invasive procedure, with biopsies, and if you carry MRSA and such you don't want scrapes or cuts in your lungs if you can help it.

He also repeated what other docs said: --Why the heck didn't Holy Cross do the bronchoscopy while you were there?!?

--Not sure. Maybe two reasons: I was a charity patient and bronchoscopies are expensive, and they really wanted my bed - they were full up and I insisted on being isolated because I have CA MRSA and also I'm immunocompromised. I mean, that should be protocol, the isolation. Over and over, they kept trying to put another patient in with me. Maybe once they finally GOT that I'm a CA MRSA carrier, they wanted me out of the hospital entirely.

--How's the CPAP working out?

Big grin! --Fabulous. Changed my life. Thank you.

Then I told him about borrowing Walter's Lidoderm patch, cause I can't afford to fill my own prescription. I asked the doc this:
--If the Lidoderm pain patches make me able to fully breathe, when nothing else works, are they then medically necessary?


But he refused to take it up with the insurance company. He said that's up to my chronic pain doc. I don't see him till next Thursday.

Big breathing help there, doc. Gee. Thanks.

This is a great doctor, but we do have some disagreements.

He also didn't know that oxygen is the #1 recommended treatment for dyspnea (shortness of breath) - even if your oxygen saturation is good. Like mine. From what I've seen on the web, this is in the context of hospice care. But I got him to agree to look at anything I could research up. While my primary would probably prescribe me oxygen, the insurance won't pay for it if my saturation is good.

By *curing* my COPD, I shot myself in the foot. Now I can't get oxygen.

And it's helpful for both serious allergies, and this shortness of breath accompanying my current acute lung disease.


Walter and I went to get special pillows for me to sleep sitting up and keep my feet elevated. This sleeping with 6 regular pillows under my feet is a problem; it's hard to keep them stacked through the night. Unfortunately, we had to end up at Bed Bath and Beyond to get ones that worked for me. I tested them out, lying on the floor.

I haven't been inside a mall for many years. That's a hugely allergenic environment. It was HORRIBLE.

So is BB&B. That vicious poisonous so-called air freshener, and potpourri, and effing house perfume, some effing plug-ins or something equally toxic. The pillows we bought - three wedge-shaped and two big square ones - were so contaminated that after leaving them outside airing out for a few days, two are still completely unusable. They just got rained on too. Hypoallergenic, my dying ass.

BTW: I know some of you really love those smells. So please, excuse my scent rants. There are scents I really love that are almost lethal to me, and some foods too. It's not that I hate them because of personal taste, okay? They literally threaten my life - and prevent me from doing something vital like buying pillows. I hope you'll bear with me on this.

The pillows cost an unbudgeted $150 dollars right there. For five pillows. See why I can't afford oxygen? Insurance won't pay for so very many things I desperately need: my HEPA machines and ionizers and filters, bandages, my new NIOSH respirator that cost $40 at Home Depot since they no longer carry the replacement canisters for my old respirators. The nutritional supplements that are FDA approved to work on certain of my illnesses, like malic acid for the fibromyalgia.

Housecleaning. This is so important, I used to go without food to pay Sylvia $60 every 2 weeks, way less than she charges anyone else for a house cleaning job. I can't fit it in my budget any more. So I just do it myself, and get very sick from it.

A bed. A hospital-type bed that would properly elevate my head and feet. Like heaven. I shut such treasures out of my mind. They are not within my reach and I don't want to pine after them.

A Healing Garden. After my appointment, waiting for Walter to come back from the cardiologist and pick me up, I scootered around in it. What a wonderful place to have in a hospital, isn't it? And shouldn't we always consider these things in the context of health? My whole yard is a healing garden for me. Yes, it can infect me too. But on balance I'll take the risk, for the healing rewards my garden gives me.

The lung doc noticed I hadn't been there for a couple of years.
--Why didn't you refill your inhalers, the steroid and rescue ones?-- he asked. --I really didn't need them,-- I said. --My lungs were doing so well. After what, 15 or 20 years of inhalers? And I used to need a nebulizer too.

He wanted to listen and told me to breathe as deep as I could - oh my God, the pain! oh I ground my teeth! and tried so hard to breathe for him and not scream. Pain level 9.5.

He said my lungs were pretty clear. I told him about working in the compost heap. He asked whatever possessed me to do such a thing without my mask?

I said, I was stupid. I just purely screwed up. After I felt what happened to my lungs, I put on a mask every time. But before that? One time. Just dumb. I throw myself on the mercy of the court.

He said, --You were doing this before too. All this landscaping. Can't you get a different hobby?

I told him, --I have some other hobbies too. But I also lost so much, so many things I can do. Had to give up one thing I loved, after another, after another. There gets a point where it's not worth living any more. I won't go there. I'll take precautions, I'll be better about that, but I won't stop what I'm doing. I can only do it part of the year anyway, I'm still housebound a lot of the time. Semi-shut-in. Especially this year. It's already bad and it's going to get much worse, extremely bad for anyone with pollen allergies. I won't be able to leave the house much.

He didn't like it but he shut up.

He asked me, --Any chills, sweats, fever?

--Oh, YES! My temp last Thursday at the primary's was 98.9. I usually run 96 or 97, 97.2. With all the Prednisone and anti-inflammatories it's virtually impossible for me to get a fever. Even with my two most serious MRSA infections I almost never cracked a fever, not even past 98.0. The folks at the hospital couldn't believe it. I was two steps away from them amputating my foot from infection, and last October I nearly lost my whole leg, and still no fevers. So that 98.9 scared me half to death.

--And I get constant chills and sweats and chills and sweats. I mean, way worse than the usual ones. I went out on that cold day, when it was in the 50's and 60's? And I sweated so much, just scootering around, that my shirt was soaked and then dried up all caked with salt rime. (I asked Walter about this later, was I remembering it right? and he said --Yes, very much. Way more than usual.)


--No. Which is really weird. I mean, I'm trying really hard not to cough, and I take the Guaifenesin and antihistamines of all kinds, but still.-- (This is why I didn't think it was either pneumonia or just pleurisy, alone.)

I asked him two more questions:

--Do I have COPD now, or not?

--We'll see after the breathing test.

--Do I have pneumonia?

--No. Definitely not.

And when I read the prescriptions, I could see that one thing he was specifically looking for was this: Aspergillus. That fungal lung infection people often get from compost particulates.

Exactly what I kept googling up when I entered *ground glass infiltrates,* the things they saw on my first cat scans at Holy Cross.

I wasn't sure if that's better or worse than pneumonia. So just now I bit my lip and googled it again.

I believe I'll be okay. I really do. I've made it through one medical scrape after another and I'm still here. I'm not coughing and not bringing up blood. That's good.

But I think I'd rather have pneumonia. For someone like me, an aspergillus lung infection is really not good. Very not good.

And it looks like I've got all the symptoms.

And in the immunocompromised, it can be fatal.

And there's not much they can do to cure it.

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prettylady said...

I've been praying for you every night before bed. Very specifically.

k said...

Thank you. Very much.

pepektheassassin said...

And I put your name on the temple roll--just "k" but I'm sure He knows who that is....

Anonymous said...

I just don't know how you keep going. Very specific prayers coming your way.

Desert Cat said...

snog dot, I don't think *not* going is in k's nature.

Livey said...

Oh I worry so much about you! Is there anything you need? Did you get my email about the stuff at Fleet Farm? Let me know what you need dammit! Love ya!

Anonymous said...

"I told him, --I have some other hobbies too. But I also lost so much, so many things I can do. Had to give up one thing I loved, after another, after another. There gets a point where it's not worth living any more."

Yes, there comes a point when to give up some things would be like giving up your soul, no?

k said...

Yes, pepek, I expect he does.

snog dot, dc - Of course I keep on going. I have this speedy scooter, you see. And it keeps going and going and going... ;-)

Livey, I missed your email somehow! I'll email you to send it again.

Morris - I'm so glad you get that. Some do and some don't. I'm very lucky because my pain doc gets it, and so does my infectious disease doc. They're my two most important ones these days.

The lung doc and rheumatologist don't. Both of them are also very anti-prednisone, and adamantly urged me to get rid of the cats, when they were still alive.

I tried to explain that these were all things that kept me alive. But their minds were closed.

I said, I'm allergic to Walter too, but that's not why I divorced him.

That didn't work either.

So Walter and I are back together, I kept my cats until they died at 19 1/2 and 22 years old, and I take care of everything I can through other docs instead of these guys.