Tuesday, April 03, 2007

It's a Lung Thing

Well. I picked up the written medical report from Holy Cross this morning. The actual films go on a CD, and the lung doc wants them before the bronchoscopy. I pick up the CD tomorrow morning.

The written report was interesting. It was 11 pages long, and I spent some time faxing it around to a list of 8 of my current docs, including kdad. It went off to these MD's:

Pulmonary (Lung), who I see on April 9, and who will do the bronchoscopy.
Infectious Disease (ID)
Rheumatologist (RA)
Pain Management
Ear, Nose and Throat (ENT)
Dad (kdad)
And last - because LEAST - The Primary, who is a total fool, and so is his entire staff except for one person, but she doesn't do any of my procedures. AKA, *The Soon To Be Ex-Primary.*

Parts of the written report cracked me up. I've been a very active person all my life, and not a little clumsy too. So I've broken a fair amount of bones. Nice hard bones, folks; until very recently, I had extremely dense ones. That's from all the heavy work I like to do. Keeps your bones dense, all nice and healthy and strong.

Well, I knew I broke some ribs along the way somewhere. But I couldn't remember which ones or even which side. I mean, surely I sound like I obsess about my health. But I really don't. If I have some health problem right now, I have to pay attention in order to stay as healthy as I can, right? Old injuries and so forth, I forget about. No longer relevant? Then I move on.

The report carefully pointed out: *Old-appearing right side rib fractures are identified.* Well! Thanks. THAT'S which side it was!

A month or two ago, my ID doc had me get a head-to-toe cat scan. That's when she swung into action to combat the mycobacterial and CA MRSA infections. Since the new scans were done at the same hospital, they could compare them. Lucky me!

The written report suspects alveolitis or pneumonitis (pneumonia). It sees *ground glass infiltrates,* worst in the left lower lung - that's the area of intense pain I'm feeling - then the middle right, then both upper lobes. The lower left and middle right are more pronounced since the last study. And, *Linear patchy pleural based densities are seen in both lung bases felt to reflect probable scarring or atelectasis.*

Okay. From what I can gather so far - kdad is away from his fax machine today, so he'll help translate for me later - it looks like this:

-Maybe infection: bacterial or viral pneumonia. Maybe fungal infection - the ground glass infiltrate thing is common with aspergillus infection. People often get that from breathing compost type particulates.

-Maybe RA based. (Weird, huh?!) Ground glass infiltrates are also associated with an autoimmune inflammation. That would actually coincide with the rib arthritis inflammation too.

-Maybe allergic. Allergenic response to certain particulates can make the ground glass infiltrates they see in the scan. And - they can provoke things like autoimmune rib inflammation.

-The old COPD and pneumonia scars are all over the place. Still.

I, uh...well, y'all know I love to garden. Do it all day if I can. I need my exercise, and my plant and critter nurturing time, and my artistic and creative expression time. (I'm not saying this is *REAL* art, okay? Please note the careful language there. ;-))

I ran out of my 500+ gallons of homegrown compost, and turned to my last stash a few weeks ago. That's actually in a big bin, whereas the 500 gallon motherlode was in a stack on the ground. The point being, I had to get my head into that bin more than I should have, considering the allergies and those scars in my lungs. I inhaled some nasty stuff.

Well...in comes the pleurisy. Damn. So I scolded myself and made sure I masked up after that. Went to the acupuncture lady and felt some better.

But I think the damage was done. When I breathe enough bad stuff to get pleurisy, that's a huge overload of substances that are particularly dangerous to superallergics with lung scars and CA MRSA and mystery mycobacterial infections and a fairly serious incurable systemic viral infection.

(stop and take a breath)

The viral thing is these cold sores run amok: it's called *disseminated HSV-1.* I get fever blisters from head to toe, and one day it'll eat up my organs. It's already in my right auditory nerve, and probably other face nerves too - I'm losing my hearing, my senses of smell and taste, and recently getting vision problems from something too. The virus lesions are triggered by things like stress, both physical and emotional. By exposure to particulates...

I'm predisposed to upper and lower respiratory infections not just from the scarring, but also because I hypersecrete mucus due to allergies. Sorry to gross you out, but there it is. The stuff pours out of my sinuses and lungs and ears and eyes and nose, and the MRSA germs love to live in nasal cavities. So with huge amounts of post-nasal drip going into my digestive tract and my lungs, the MRSA germs travel there very easily. Plus, all kinds of germs just LOVE those conditions in general. Great germ food.

I, uh, get Warned!!!! about this from my docs. A lot. *k! You don't want MRSA belly infections.* I already had one MRSA sinus infection, and man oh man, I don't want that again. My wonderful friend Burke, a man Walter and I both loved so much, died from MRSA pneumonia. Well, it was a pulmonary embolism at the end, but MRSA pneumonia set up the PE that did him in.

Thus the great care I take with my bedding (dust mite allergies), and my house air (pollen, mold, dust, etc.), and those HEPA air filter machines I can't afford, not to mention replacing the expensive filters...or the HEPA vacuum cleaner I'm not supposed to use myself because when I clean house I expose myself to all that bad stuff, yet to stay as healthy as I can, I need the cleanest house I can get, and I can't afford a housekeeper any more, and the social worker trying to help me can't find anyone willing to clean a house with a MRSA carrier living here...

I blew it. I should have masked up before I put my head in that darn compost bin and I didn't.

However. I will NOT beat myself up over it. It was only one contributing factor of many, and I refuse to give up and stop living. I've lost the ability to do so very many things I love to do. I will NOT give up what little I have left, not without a fight. Even if I make some mistakes, like not wearing my mask when I should, or walking too much sometimes. I'll start over and be more careful next time - but I won't stop living.

Well. Now kdad will call tonight and translate this doctor report gobbledygook for me. Meanwhile, I have a fight on my hands. Whether it's pneumonia or something else, I've obviously got a blast of lung disease again.

There are some simple universal treatment approaches to use. However, the insurance company and too many of my docs may not want to go along with the program as I see it.

-Get oxygen. This is very helpful for lung disease. It seems pretty basic, right? If your lungs are injured from an infection, they can't work as well, and getting extra oxygen makes their life easier. Let the lungs concentrate on healing, not just the breathing part of their job.

But last I tried, the medicos fought me tooth and nail. Since I was *undiagnosed* with COPD - even though COPD is incurable, so that's an impossibility, remember - Medicare refused to pay for my oxygen. All I have now is a little emergency tank, which I can't afford to refill, so I save the half-empty tank for serious emergencies only.


Let me explain.

To keep one's lungs clean, a few simple techniques go a long way. One is just this: breathe as deeply, as fully, as you can. This helps the cilia work.

Cilia are these wonderful little hairlike structures that sweep the goop out of your lungs, up up up to the top, then tip it over the edge into your esophagus. The cilia are killed by smoke, especially tobacco smoke.

Also, they don't work very well when you're lying down. That's why many smokers and allergics, especially asthmatics, cough a lot when they first wake up. They sit up in bed or stand and walk around, go get breakfast. The point is, they're upright, see? Suddenly the cilia start working like gangbusters. All the mucous that's accumulated overnight starts to get swept out of their lungs. Result? Overload. They cough: another mechanism our body uses to clean out the lungs.

So here's some important steps toward better breathing during pneumonia.

-Eat and/or drink hot liquidy food. I do that all the time anyway as an allergy treatment. You may have noticed me cooking a lot of soups and stews and things, right? That simple practice, *hot liquidy food,* breaks up the mucous in the upper and lower respiratory systems, and eases the swelling and spasms there too. Helps everything get cleaned out, and it's wonderfully soothing as well.

-Take hot baths. Same reason. Oh - also, this means you're breathing steam. Same principle as above.

-Sleep sitting up. If you sleep in an upright position, the little cilia keep working all night.

-Treat that lung and rib pain. If you can't inhale deeply because the pain is too great, your recovery time from a wide variety of both illnesses and surgeries is much longer. Study after study has proven this. The anti-pain meds people work very hard to keep us from getting into those dangerous pain meds. Because they Really Care about our well-being.

As a result, we have far more deaths from pneumonia than we would have otherwise. Did you know that?

I was at about 1/4 - 1/3 of my usual lung capacity the whole time I was in the hospital. Despite having a very high pain tolerance - yes, I actually do! - I simply could not breathe.

That's the reason they gave me morphine. They know it's important treatment when you can't breathe right because of pain. I'd go from about 1/4 lung capacity to 1/3 capacity for an hour or two after a morphine shot. But they only allowed me one small shot every 4 hours, and I had to request it. Then I had to wait as long as 1 1/2 hours for the shot to arrive. Meanwhile, of course, for most of the time I couldn't breathe again.

The anti-pain med special interest groups is why they didn't give me nearly enough pain treatment to be able to breathe full breaths.

It's also why they didn't look for morphine alternatives.

When I got home, I borrowed one of Walter's Lidoderm patches. These are external skin patches saturated with something like novocaine. You stick them on the place that hurts. I DO have my own prescription for them, but I can't fill it, because the insurance company is fighting me. Lidoderm patches cost $450 per box, a one-month supply. I simply don't have the funds, and the insurance company doesn't want to pay for them, so they put up bureaucratic delays.

Wouldn't you think anti-morphine people would try to make these non-narcotic patches MORE available? But, no. If your agenda says, *Treating Pain is Immoral,* then of course you wouldn't want any morphine alternatives running around. That might make pain treatment look less immoral. Can't have that, now can we?

About 10 minutes after I put Walter's Lidoderm patch on the inflamed rib area, I drew the first full breath I'd had in 4 days.

Yes, it still hurt bad. But it was finally bearable.

That's all they had to do in the hospital the whole time I was there. A simple Lidoderm patch. Instead, they let me suffer. I do not use that word lightly.

The inadequate pain treatment left me in much greater danger from pneumonia as well.

When I try to explain to people that I'm not always calm and peaceful about my health issues, pain treatment is an area that comes to mind. This makes me very angry. It looks to me like someone else's political and/or morality agenda is being furthered at the expense of my health, and the health of lots of other people too. The elderly and the terminally ill are especially hard hit.

I saw my grandmother suffer, needlessly, from terminal cancer for exactly the same reason. The anti-pain med moralists? For her own good, they didn't want her to get addicted - as she lay dying. So as she died, very slowly, she remained in terrible pain.

Excuse the soapbox, folks. You see, every breath I've taken today reminds me of this problem. Every single breath.

I would never force someone else to take pain meds if they didn't want to. They have no business forcing me to do without them, especially when they are so medically necessary.

All right. Back to business.

If any of you have any other lung repair advice, I'd love to hear it.

Meanwhile, I'll keep up with the Lidoderm patches and all my other pain meds too. I'll sleep sitting up at night. I'll tie myself down if I must, to keep me away from gardening dust for a few days more. If I do hang around any particulates, I'll mask up first.

And I'll rest. A lot.

That part? Almost no choice, there. I am packed with exhaustion from head to toe.

If I sit very very still, don't turn my torso or bend over, don't laugh or cough, the pain is much less. So the breathing is much better.


Breathing is good.


prettylady said...

OMG, k, I skip looking at your blog for ONE DAY and this happens. Sending blessings.

About lung repair; I realize that what I am going to tell you sounds completely insane. But it is, at least, completely innocuous and cannot possibly hurt you.

As often as possible, hold one of your ring fingers with the other hand, or touch your ring finger to your thumb on both hands. You can even arrange your hands this way while you sleep.

This is a 'jin shin jitsu' energy hold, for the specific purpose of clearing the lungs.

I had severe asthma as a child, which fortunately cleared up gradually as I got older. I still had a certain amount of fear about running, since running in gym class tended to bring on an attack as a kid.

I started habitually holding my thumb and ring fingers together while running, and it really did seem to help. I've occasionally slept this way when I had a cold or an allergy attack in a strange place, and it helped then, too.

About the pain meds--friggin' Puritan culture. Sanctimonious bastards. Grumble, grumble, grumble.

Nancy said...


no offense, pretty lady, but I didn't really believe that touching ring finger to thumb would make any difference...but I tried it

amazing. I don't know what's happening... but something was.


got anything for pain in the ear/tooth area?

k said...

Pretty Lady, you can't turn your back for one minute! I live a banana peel kind of life. Blessings are most welcome.

I will definitely give the ring finger/thumb bit a try. Can't hurt, might help, so why not? And coming from you, I give it far more credence than I would from someone else.

Add this: at least 70% of asthma is primarily an allergic reaction. (Yo!) So we're starting from some similar bases, there. And Nancy's got allergies and asthma and lung issues, too. She was inpatient for a week with a PE not long ago. She doesn't mention it any more but I bet her lungs still hurt from that.

So thank you. When I asked for any further suggestions, I meant it. I'll try it out and let you know what happens.

Nancy, now I'm curious about your ear/tooth thing. There can be some very surprising causes for pain there. Mastoid sinus inflammation, things like that.

Even relatively minor problems with the *usual* sinuses can cause tooth pain so extreme people get root canals done by dumb or unscrupulous oral surgeons, when the teeth were just fine - but the sinuses were infected.

Allergies, asthma, sinusitis - and you and I, and many others, have already noticed good bouts of allergies already. It's going to be quite a year for allergies. Could be the worst on record.

prettylady said...

Nancy, there's a trigger point just outside that cartilagenous bump on the facial side of your ear canal. You want to apply pressure there as though you were digging into your sinus with your finger; squish it all around until it feels right. This will help the sinus to your inner ear drain itself, and hopefully relieve the pressure on the nerve to the tooth.

Good luck.

prettylady said...

Also, both of you--for allergies, there are some Chinese herbal antihistimines called 'Pe Min Kan Wan' that are the best I've ever tried, including all the steroid goop prescribed by Western doctors, and averaging about $2.50 a bottle. If you have a Chinese grocery store anywhere near you, or you have a friend who lives near a Chinatown in any major city, pick up a couple of bottles. It's in a green and white box. You need to take three or four pills every time.

They stop an allergic attack cold, and don't have the same drowsiness side effects that things like Benadryl do.

k, your acupuncturist might know where to find them.

k said...

Pretty Lady, she surely will. She told me about one on University that sells a good liniment she used on me. The other major Chinese store here is one I recently went back to for the first time in five or more years. Part of some things I'm changing in my life. Reverting back to, more like.

Either one of those stores may have it, so I'll check.

Otherwise, I might have to increase my steroids. I currently take Prednisone doses on alternate days of either 25 or 35 mg. Which the hospital got all screwed up, of course. (But I'd brought a week's worth of pills with me, so they didn't cause me any real damage.)

I think that's the lowest dose I'll ever be able to function on. Before the high-dose steroids, I spent about 10 months of the year bedridden with allergic fatigue. So I don't resent the steroids like some folks do - especially where doctors have foisted them onto uninformed, and therefore unconsenting, patients.

I'd be dead without them. Dead many times over, and in many different ways and degrees of measuring death. So I'm glad for their benefits, while I work at keeping the side effects to a minimum. And use every other weapon at my disposal, too, of course.

The problem is, my reactions this spring are already so pronounced I'm afraid I may have to increase it. And it's on the steroid dose increase that the greatest danger of infection resides.

So right now would be an especially bad time to increase steroids. Like, possibly, killer.

So yes. I'll be trying those Chinese antihistamines.

And the pressure point you just described to Nancy? I found that one by accident years back. Now I'm wondering if some of the other ones I use in my face massages are also more universally known - I mean, things I just stumbled on by trial and error. I've absolutely no training or reading behind me in these little endeavors.

How does one arrange one's fingers for sleep? Thumb onto ring finger fingernail?

And, does the side matter? (eg, left ring finger for left lung?)

prettylady said...

Thumb onto tip of ring finger, so that skin is touching; I don't know if side matters. I usually try to do both. It's like ballet, or nineteenth-century female deportment lessons.

Kasey said...

Wow! This is a great place for information and I sure do appreciate it. I, too, have COPD/E and asthma and am always looking for alternatives to the Big Pharma.

K, I am so sorry for all the pain and hardship you are going through. Thank you so much for sharing your experiences in your blog and to all of you for sharing your wisdom. I appreciate all of it and am soaking it up like a sponge.
I will visit here regularly and I will hold you prayerfully.
Sweet blessings to all,

k said...

Kasey, welcome! If I'm able to be any help to you, I'm glad. I spend a lot of time goofing off with my plants and flowers and so forth, and sometimes I forget that dealing with my health issues is one of the main reasons I started this blog.

Then, as life would have it, I get a rude reminder. Ah well!

We have a bunch of people coming by here with different health issues. And at the same time, we also tend to love our gardening and pets. A very nice loose blog circle here. So I hope that together with any advice we may toss around, you can have some fun here too.

Pretty Lady, when I moved my other finger off the ring finger's fingernail and onto the flesh - my lungs were able to expand more fully. The effect was noticeable and almost instantaneous.

This is really weird!

Nancy said...

Pretty Lady, K,

I couldn't tell at first if it were my ear or the tooth. I think it may be the tooth, as I've a broken filling and that could be causing some trouble..
on the other hand, I've also had a lot of allergy hits and I feel the pain in my ear too..

IF I can see my Primary Doc, I'll get him to look in my ear and check for redness.
until then, I'll start the antibiotics I've got on hand (doc says to keep'm on hand for the times we get sick on Saturday)

that ring to index finger position is amazing...

prettylady said...

More information on jin shin jyutsu is available online here and the book I read can be bought at Amazon.com, here. Unfortunately my copy disappeared when some Other People occupied the house I was living in at the time.

I'm glad it's working. I've never tried it on anything so severe.

k said...

The funny thing is, at first I thought it wasn't going to work for me. I mean, things like that can be a bit hit-or-miss. That's why I asked where you touch the ring finger. I'd been touching the fingernail, and felt no effect.

As soon as I moved my finger over, I felt a difference.

When Walter asked me if I thought it might be a placebo effect, I told him I'd wonder, except for this: I'd already decided that while it looked good for Nancy, it wasn't going to work for me. You see, that's when I was touching the nail instead of the finger itself.

This is really weird! I like it.