A week ago Monday, I did my new high-resolution lung cat scan, and breathing tests in a spaceship-looking thing, and a bunch of blood tests at the Quest Diagnostics lab.I do blood tests all the time. These were ordered by the lung doc, Dr. S, trying to figure out what's happening with that Not Pneumonia thing.
Good ol' Quest.
That's the same place that threw away 4 of the 5 biopsies taken from the extremely tender infected lymphatics in my right arm. You know. So I had to DO THEM OVER again. Those ones.
They love to pretend the blood tests will be ready in 24 hours. --Oh!-- they say --48 hours maximum.
Thursday was my appointment with the lung doc.
Monday's blood tests were NOT back yet.
grrr!
The cat scan was basically unchanged. Scars and ground glass infiltrates and such, no pneumonia. The breathing tests showed some asthma and so forth. No surprise there!
Broward General, to very mixed opinion, has a McDonald's in the hospital lobby. Me?
Between the breathing tests and the cat scan, I had a few minutes to spare. Since I'd been fasting for the breathing test - meaning I missed my morning espresso - I headed for the other Broward General Lobby option.
Starbucks!
And spent almost $5 on the same espresso I make for myself each morning. Egads.
Doesn't Cat Scan Man make it look inviting?
I brought Dr. S some articles from the Web about using oxygen to treat shortness of breath - dyspnea - even for people with good blood oxygen saturation. First off, he noticed the studies were done on hospice and lung cancer patients. Okay, but, come on. Same principle.
He'll prescribe me oxygen but we both know the insurance won't pay for it... --So what good do the articles do?-- he wants to know.
--A lot!, I say. --Now I know for sure I wasn't nuts for feeling how much that oxygen was helping me.
With prescription in hand, but no insurance willing to pay for it, I may go on a Free Oxygen Quest. That should be interesting.
At the end, Dr. S asked me, --Okay. What else can I do for you from here on out?
--Help me breathe.
So. I'm back on inhalers. After 2 years without them. One steroid inhaler, one rescue inhaler. And I can tell they really are helping.
That doc is a character and a half. Hugely great at what he does. I asked kdad to check his creds for me, and I've never seen him react that way. He was falling all over himself, impressed.
With good reason.
That doc also has a very dry delivery, and sense of humor. That's fine by me. He appears all frowny and serious, and can be a bit...harsh in his speech. So I just backtalk him right hard, and we get along. He's an intimidating guy, but I don't intimidate easy.
One visit, he asked about, ah, mucous issues. I'm a hypersecretor. So I answered, all matter-of-fact - actually sort of braggy - --Oh, I'm a snot factory!--
He was quite startled, looked up all quick. Studied me with that sharp gaze. Then he started making booger jokes.
That lung visit was last week, Thursday. I've been waiting for the bloods ever since. I really want to know if they turn up anything on aspergillus. The blood tests are far more significant to me than the cat scans or breathing tests.
This week I have three Doctor Days in a row.
I try very hard not to do that, especially now with the pollen so high. I'm most dreadfully sick with it, fatigued and dizzy and sleeping copiously. But, that's how those docs had appointments available, so there you have it.
Monday was the RA doc. And after I got home from that, I crashed. I need to sleep in the day right now to help me deal with the pollen.
Which is why I missed a phone call made at 6:34 PM.
When I woke up around midnight I had this cryptic message on my machine from the lung doc. Here, I'll transcribe it for you:
--This is Dr. S. I got back your blood work from Quest and wanted to discuss it with you thank you...HUH!!!
That last bit was his sarcastic barking laugh.
???
Was it directed at my blood tests, or just at someone in the background at his office?
AAAUUUGGGHHH!!!
He's at a different office Tuesday, away from my file, so that's probably why he didn't call back yet. And I'm sitting here ready to curl up and die from curiosity.
It's been a long time since I saw the rheumatologist. Since August. I usually hang out there every one to three months. They seemed a little hurt I hadn't been by in so long.
So I explained: Well, in October I almost lost my leg to CA MRSA, so I had to cancel that October appointment with y'all, then these wonderful bloggers got together and raised up money for a scooter and Walter came home and we scooter-shopped around Thanksgiving, which wore us both out, then he went back to work and had a heart attack and triple bypass and almost died, then he came home to get better and I was still sick recovering from the infection, so between everything I couldn't get around to doctor visits too well, then Walter went back to work, but then a few weeks ago I got an aspergillus infection or something in my lungs and couldn't breathe and spent 3 days in Holy Cross and then...
Okay, okay!
heh!
Dr. K, the RA doc, HATES Prednisone. We had our usual fight about it, and he wants to see if we can substitute CellCept for immunosuppression, so I told him, I'll try anything as long as it keeps the allergies under as much control as I can get.
Which is true.
OTOH - if it ain't broke, don't fix it. He hates steroid treatment with an unreasonable passion. He can't accept that I made an informed decision to take them, and he never will. He's tried to substitute other immunosuppressants with me before, and they did NOT help either the allergies or the arthritis, and had far worse side effects on me than the Prednisone does. I really hate wasting my time with this attitude. The reason I take it is because in every other way, he's a fabulous doctor. I've learned a great deal from him, and he helped me get my first scooter.
To Dr. K, anyone ever taking a steroid means it's broke and needs fixing. To me, here's a doc who never knew me when I spent 10 months per year mostly bedridden. THAT was broke and needed fixing.
That was not living. I would rather die than go back to that life. Most of my doctors understand this and respect my right, and my intellect, in making that decision. Dr. S does not, and Dr. K absolutely does not.
Luckily, they all defer to my infectious disease doc now. CA MRSA carries a great deal of authority. Immunosuppressants, of course, mean I'm way too susceptible to infection. So, the ID doc? She rules. And she can SEE the great value the steroids provide me.
I finally feel safer from the RA doc's anti-Prednisone predations than I ever have before.
RA was Monday.
Yesterday, Tuesday, was yet more bloodwork, fasting; then I saw the great dermatologist.
Today, Wednesday, is Ear Nose & Throat. He's a trip too, I really like him.
Then...bliss. No appointments until May 3. Well, except I'll probably want to see the ID doc. Outside of that?
I can rest.
He'll prescribe me oxygen but we both know the insurance won't pay for it... --So what good do the articles do?-- he wants to know.
--A lot!, I say. --Now I know for sure I wasn't nuts for feeling how much that oxygen was helping me.
With prescription in hand, but no insurance willing to pay for it, I may go on a Free Oxygen Quest. That should be interesting.
At the end, Dr. S asked me, --Okay. What else can I do for you from here on out?
--Help me breathe.
So. I'm back on inhalers. After 2 years without them. One steroid inhaler, one rescue inhaler. And I can tell they really are helping.
That doc is a character and a half. Hugely great at what he does. I asked kdad to check his creds for me, and I've never seen him react that way. He was falling all over himself, impressed.
With good reason.
That doc also has a very dry delivery, and sense of humor. That's fine by me. He appears all frowny and serious, and can be a bit...harsh in his speech. So I just backtalk him right hard, and we get along. He's an intimidating guy, but I don't intimidate easy.
One visit, he asked about, ah, mucous issues. I'm a hypersecretor. So I answered, all matter-of-fact - actually sort of braggy - --Oh, I'm a snot factory!--
He was quite startled, looked up all quick. Studied me with that sharp gaze. Then he started making booger jokes.
That lung visit was last week, Thursday. I've been waiting for the bloods ever since. I really want to know if they turn up anything on aspergillus. The blood tests are far more significant to me than the cat scans or breathing tests.
This week I have three Doctor Days in a row.
I try very hard not to do that, especially now with the pollen so high. I'm most dreadfully sick with it, fatigued and dizzy and sleeping copiously. But, that's how those docs had appointments available, so there you have it.
Monday was the RA doc. And after I got home from that, I crashed. I need to sleep in the day right now to help me deal with the pollen.
Which is why I missed a phone call made at 6:34 PM.
When I woke up around midnight I had this cryptic message on my machine from the lung doc. Here, I'll transcribe it for you:
--This is Dr. S. I got back your blood work from Quest and wanted to discuss it with you thank you...HUH!!!
That last bit was his sarcastic barking laugh.
???
Was it directed at my blood tests, or just at someone in the background at his office?
AAAUUUGGGHHH!!!
He's at a different office Tuesday, away from my file, so that's probably why he didn't call back yet. And I'm sitting here ready to curl up and die from curiosity.
It's been a long time since I saw the rheumatologist. Since August. I usually hang out there every one to three months. They seemed a little hurt I hadn't been by in so long.
So I explained: Well, in October I almost lost my leg to CA MRSA, so I had to cancel that October appointment with y'all, then these wonderful bloggers got together and raised up money for a scooter and Walter came home and we scooter-shopped around Thanksgiving, which wore us both out, then he went back to work and had a heart attack and triple bypass and almost died, then he came home to get better and I was still sick recovering from the infection, so between everything I couldn't get around to doctor visits too well, then Walter went back to work, but then a few weeks ago I got an aspergillus infection or something in my lungs and couldn't breathe and spent 3 days in Holy Cross and then...
Okay, okay!
heh!
Dr. K, the RA doc, HATES Prednisone. We had our usual fight about it, and he wants to see if we can substitute CellCept for immunosuppression, so I told him, I'll try anything as long as it keeps the allergies under as much control as I can get.
Which is true.
OTOH - if it ain't broke, don't fix it. He hates steroid treatment with an unreasonable passion. He can't accept that I made an informed decision to take them, and he never will. He's tried to substitute other immunosuppressants with me before, and they did NOT help either the allergies or the arthritis, and had far worse side effects on me than the Prednisone does. I really hate wasting my time with this attitude. The reason I take it is because in every other way, he's a fabulous doctor. I've learned a great deal from him, and he helped me get my first scooter.
To Dr. K, anyone ever taking a steroid means it's broke and needs fixing. To me, here's a doc who never knew me when I spent 10 months per year mostly bedridden. THAT was broke and needed fixing.
That was not living. I would rather die than go back to that life. Most of my doctors understand this and respect my right, and my intellect, in making that decision. Dr. S does not, and Dr. K absolutely does not.
Luckily, they all defer to my infectious disease doc now. CA MRSA carries a great deal of authority. Immunosuppressants, of course, mean I'm way too susceptible to infection. So, the ID doc? She rules. And she can SEE the great value the steroids provide me.
I finally feel safer from the RA doc's anti-Prednisone predations than I ever have before.
RA was Monday.
Yesterday, Tuesday, was yet more bloodwork, fasting; then I saw the great dermatologist.
Today, Wednesday, is Ear Nose & Throat. He's a trip too, I really like him.
Then...bliss. No appointments until May 3. Well, except I'll probably want to see the ID doc. Outside of that?
I can rest.
10 comments:
Hey. This was a strange way to wake up. Your blog came up in my mail because I search for MRSA daily, but then I read your bio first and thought it was mine word for word. Then I rad your writing and the same weird de ja vou thing happened. (Except I hate Prednisone!) So what can I say but great blog by a great person? Best wishes, Rhoda
Well thank you! And welcome. I'll be by to check out your place as soon as I get back from the doc's.
I haven't been at a doctor since 1996 ... Maybe that's why I'm so healthy, huh ... I don't have any doc. to mess me up. :)
see, you gotta know their orientation.
some docs are the fix what's happening now. some, like dr k, want to do that, but worry about the long-term effects. prednisone, and other steroids have long-term effects.
medicine is not an exact science, it's a "we're really guessing here" science.
but you already know that.
good thoughts for you as you hit the doctor's offices!
snog- get to know a couple. they're not bad. most really do their best- but they're working on a complicated, poorly understood, poorly managed system- and that's just the patient's emotions. It gets crazier when they actually have to start working with the patient's bodies!
K, this is off topic, but an answer to a query left in a comment at Banes.
It seems our redback spiders and the funnelweb spiders are related, according to this Wickipedia article.
http://en.wikipedia.org/wiki/Red-back_spider
No appointments until May 3... you make that sound like a long time! Ha! You are amazing... you are dealing with all these things and still have the voice of a wise and wonderful person. Glad I found you.
How you feeling today?
Good morning, k! Sending blessings and all sorts of goodness!
Kirsten - :-D !! You have a point there. Doctors have saved my life, more than once. But they've also almost killed me - more than once.
Snog Dot, I often do too. And right now you'd probably be glad to never see one again, and who could ever fault you for that?
Me, when I hate a particular doc, I fire them and go find one I like. Some are good and some are bad, individually. Firing one I hate is a wonderfully liberating feeling.
Now: on the general idea of having to go see them all the time? Yeah. I REALLY could do without that. So happily. But that's my life now, and I'm better off being patient with it when I must.
Which doesn't mean I'm not plotting my escape from their evil clutches...been making those plans for many years now. Excellent plans. ;-)
JWYW, I do understand Dr. K's worries. But I've told him over and over and over that I know what those long term effects are. My dad's an MD, a microbiologist; and his father was one of the first people ever treated with cortisone, back in 1958. It saved his life, but half-blinded him too, when they withdrew the steroid all at once instead of tapering.
My quarrel with Dr. K lies in the fact that he refuses to accept that anyone can be informed about the side effects, yet still choose to take them. I was encouraged by other docs to take them for many years before I finally acquiesced. The change in my health was like a miracle, and the look on those doctor's faces when they saw me next was pricelss - they almost didn't recognise me, or my voice. They were overjoyed for me, and with very good reason.
High dose Prednisone gave my life back to me. My only regret is not taking it sooner.
Dr. K is, in essence, disrespecting my intelligence and moral compass, and violating my personal sovereignty. It's my right - not his - to make that choice. He wastes my time on every single blasted visit trying to change my mind about Prednisone, when I have other health needs I'm trying to talk to him about. It really gets irritating.
I would never force anyone to TAKE steroids. If he legally could do so, I've no doubt he would force me to abandon them. I'm neither a child nor mentally incompetent, and naturally enough, I greatly dislike being treated like I am.
morris, YAY! heh! The things that stick in one's mind. I must have gotten that bit of info off a Steve Irwin episode, or something on the Discovery channel. YEARS ago.
Sue, thank you. I have to work at it, believe me. And seeing that *long distance* until May 3 is one way of doing that. Now I can fill my mind with all the great *Play Time in the Yard* that's headed my way until then. Here's where I turn into a 2-year-old playing in a sandbox.
PL and JWYW, good morning to you! I'm feeling a little better now, Thursday and this morning, Friday. I've actually been getting some outside work done, so I'm not totally shut in yet. I've been waking by 2am, blogging and doing paperwork until daylight. Then I have several hours I can tolerate the air outside, until noon or so, when I've lost my voice and balance and need to come in and crash.
But that's fine. If I have any *free* hours - outside hours - during a pollen spike like this one, I'm very lucky. I milk that for all it's worth, too!
Post a Comment