Tuesday, April 28, 2009

Unless, Perhaps, it's Swine Flu

HA! Wouldn't it kinda figure?

We actually do have all the listed symptoms, including episodes of pronounced dizziness, fever, nausea, terrible respiratory illness, and the rest.

Yet maybe - maybe - we've both been feeling minimally better. Tiny signs. Neither one of us can tell if it's just the periodic miniature ups and downs one goes through during a cold or flu bout; and of course, if there's any real recovery then we DON'T want to jinx it. heh!

Walter, IMO, has been a little sicker than me throughout. Unexpectedly. The immunocompromised person should be sicker, right? OTOH, I take high-dose antivirals: 3200 mg of acyclovir (Zovirax) per day. That's for the systemic "cold sore" disease, HSV-1, that gives me blood blisters on my tongue and palate and toes. Acyclovir isn't listed by the CDC as effective against swine flu, but it's in the same class as the antivirals they do recommend.

Dr. C's office just called. She says, --If we feel like that's what it is, go to the hospital.-- Do not pass Go, do not collect $200. And I know she'll continue to give this careful thought and research, for lots of reasons.

But...if we're starting to recover, after 2 weeks already --

and considering that my standing orders about hospitals are, --If I need one, just dump me by the side of the road instead --

not yet. Not me.

Third reason?

The flu is viral. Coincidentally, Dr. Dad happens to be a virologist by medical trade. Better yet, he's published a number of journal articles about flu epidemiology over the years, sort of as a flu hobbyist. I sent him an email. His feedback on such matters is generally...let's just say, *excellent.*

So I'll give it a little more Wait and See.

And in the meantime, all y'all be GOOD, and don't be running around getting all sunburned and such. sheesh! ;-)

Sunday, April 26, 2009

Happy Caturday Everyone!


I'm a whole day late?

Well, if that's all the behinder I am, I'll consider myself ahead of the game.

Just wanted to let you know we're still alive, and soon will be thinking about kickin'.

Ummm...probably. The soon part, I mean.


And to thank you for your comments, too. Very much.

Wednesday, April 22, 2009

Just When You Thought It Was Safe to Go Back In the Water...

Last week it was. Monday. So there we were, me back from the nursing home all of a week or two, Walter working hard in his role of unofficial caregiver. And the silly MRSA-in-the-arm was fading, but way too slowly for my taste.

One big lesson we learned from this latest health episode was to go outside an institutions' doctors, straight to The Usual Suspects. Yup. A person's real docs? They know your history. Maybe more importantly, they have a working relationship with you. You've worked out whatever needs they may have to play Lord High Doctor. (Or more likely, if they tried, you said, --No thanks-- and found someone new.)

My ID doc is my absolute favorite of all. I admire the stuffing out of that woman. She's not just Infectious Disease, but also board-certified in Internal Medicine, giving her a handle on most everything else that's wrong with me. Gifted. Brilliant. Kind. Tough. Sweet. Funny. Beautiful. What's not to like?


When I saw her the first week after the Great Escape, I was a mess. Paranoid, after such odd experiences. Way too ill. Dr. C and her staff had done a lot of special rescuing for me. In the end I was a royal pain in the ass of a patient, and I was afraid she was going to tell me to find another doctor, that my high-maintenance needs overburdened her staff beyond any reasonable limits...

Walter thought I was being a bit ridiculous, but you can't talk sense to a crazy person. If it's temporary insanity you just have to wait until it passes.

Dr. C was the very first doc I saw after the Escape. She walked in the door and asked me what happened at Imperial Point, where I'd tried to get admitted to treat the MRSA.

Listening, she frowned and shook her head in gentle disgust. Then she put her hand on my arm and looked me square in the eyes and said: --k. Next time come straight to me. I can give you Vancomycin here. I don't like all this back and forth with phone calls to other doctors and not knowing exactly what's going on with tests and things...

and oh, I almost burst into tears.

[safe safe safe...]

The next Monday that blasted MRSA was still hanging on. Sort of sneering at us. So around midday I called up, explained, and got squeezed in on her next office day, Wednesday.

By the time Walter and I got there, the MRSA was less an issue than this killer cold both of us have. Coughing our lungs out. Air hungry, breathing knives. Sneezing and fevery and room-spinning dizzy and can't-get-out-of-bed drop-dead sick.

HA! We didn't even know for sure what was wrong when we got up in the morning. But every second that passed we were 100 times worse. By midday, with the doc listening to my chest and telling me to breathe, it kept making Walter cough. Which would make me laugh and start hacking and choking again.

Just a good old-fashioned cold.

For which the doctor ordered the following: Go to bed, rest, eat chicken soup, take Tylenol, wait it out.

That's exactly what we've both been doing ever since.

There's something rather comforting about having a perfectly ordinary malady, curable by time and bed rest and chicken soup.

Friday, April 17, 2009

Me Too. Thank You, Nancy.

I'm sorry I've been MIA for so long. Every time I say I'll try to be better about updating, it seems to jinx my efforts.

Therefore: I shall now try to perform a reverse jinx, by explaining my good intentions to be better about NOT updating. With a wee bit of luck, this could leave us all a little less satisfied as each day passes with no news exchanged, and no visits and comments over at all y'alls' houses.

Yes. It's incumbent upon me now to do the right thing as far as possible, to cavalierly leave stalwart friends to pick up the pieces and reassure readers that at least I've been sighted somewhere - briefly perhaps, and wobbly, but still alive.

Ah, yes. I've said it before and I'm sure I'll say it again: You guys are great. Thank you for standing by in these times.

And thank you, Nancy. For real.

Monday, April 06, 2009

I am home.

I am home.

I am safe.

Home is not where I’m supposed to be. There’s a bad infection, probably MRSA, in the lymphatics in my right arm. Three big lymph nodes and three lymph vessels, it looks like.

Back into the hospital, with a vancomycin antibiotic IV drip, is where I’m supposed to be. But it seems my safety as a patient has not been a priority at either one of the two hospitals and their ER’s that I’ve visited in the last month.

Here’s something it half kills me to admit: In this past month, I’ve been so physically and emotionally traumatized by the health care system that I’ll probably seek professional counseling. My hands and feet have little function remaining. I think I could handle that without counseling, if I weren’t so shattered by the backdrop of genuine malpractice I’ve gone through to get here.

By way of example, here’s the latest episode.

The lymphatic infection had been brewing for a week. Friday morning, it was slowly - but clearly - gaining headway against the oral antibiotics we’d pitted against it. Before noon, the nursing home arranged for me to be transferred immediately to the hospital for inpatient admittance.

Vancomycin drips, especially for a "special needs" patient, are inherently dangerous. I tried to talk them into doing the drip at the home, but they declined. Courteously and kindly, they declined nonetheless. And rightfully so. Maybe…

Not only do I carry the superbug MRSA, it’s one of the most virulent strains around. I almost lost my left foot to it in 2004. Back then, it stayed alive in my home for at least seven days while I was away at the hospital. A friend of mine cleaned my house then. It was probably while she changed my bedding that the MRSA entered her arm through a tiny cut, and it nearly killed her.

Few strains of MRSA can live in ordinary bedding for an entire week.

Add this: With an IgG count down to 294, I’m more immunocompromised than ever. And this: In the last 10 days I’ve tested positive both for tuberculosis and e. coli.

The reason hospitals isolate patients like me is simple. We are dangerous to other patients, because we can infect them far more easily when we’re sharing a hospital room. In my case, they’re also dangerous to me.

If your hospital doesn’t have enough rooms, they should be honest and say so. They should not put patients at risk by pretending it’s not medically necessary to isolate carriers of an extra-superbug MRSA, and of TB, and of e. coli. But hey. Maybe I'm not all that infectious!

Would you want a loved one in the same hospital room as me? I sure wouldn’t.

Early Friday afternoon, the latest hospital parked me in a corner of the ER, instead of admitting me immediately. No beds were available. The ER folks were nasty from the start, and made a big production of taking great volumes of blood for testing. Reluctantly confessing I did indeed have a high WBC, and that they "had to" admit me, they fed me one dose of vancomycin.

Friday night, I was still in the ER, waiting. Finally, a bed was "becoming" available. When they told me I wasn’t "allowed" to have a "private" room, I refused to go upstairs. To share a room with an innocent and uninformed bystander would, in my book, be immoral.

I went over my history with the senior doctor, including the difference between a private room and medical isolation, but he refused to isolate me. Given all that, and their clear antagonism, how could I possibly feel safe in their care? No. I would not stay.

I also refused to sign out "against medical advice." Declining to accept an unsafe medical practice is a different matter entirely, so that would have been an untruth. I’d caught three nurses and two doctors in a number of lies by then. I didn’t want to join their ugly ranks.

Several hours had gone by since I’d told Walter and my mother they were going to admit me. By Friday night, I should have called home again with my room number. Of course, I didn’t have one. Having tried unsuccessfully to call Walter, I was pondering my next decision. Not easy to do when all feverish with MRSA sickness.

Should I insist upon transport to yet another hospital? The same thing could happen all over again. Especially since it was now after hours. The nursing home staff who’d ordered the transfer had changed shift. My regular doctors, familiar with my MRSA history, were now gone for the weekend. I had no medical authorities to back me up.

At that point, I felt more vulnerable, more unsafe, more unprotected than most people could comfortably deal with. I closed my eyes and bowed my head and tried to think.

And looked up again out my door, and saw Walter striding up to my bed.

He’d been trying and trying to reach me, figuring something had gone wrong. An ER nurse, taking his phone call, got all rude and hung up on him. So he decided to come get me in person.

Looking up and seeing his face, people, oh! I have never seen anyone so glowing with Knight in Shining Armor aura.

He tore those jackasses up one side and flayed them alive down the other. And bundled me and my possessions up in wheelchairs, installed us in the Isuzu, and took us all home.

After stopping at Lotus Chinese Kitchen on the way.