Wednesday, November 21, 2007

A Walter and k Health Update

Please forgive me for this way overdue update. Walter had his heart catheterization last Thursday, and his vessels are clear as can be. So much so that the doc was quite surprised.

All clear. REALLY clear.

This means - to me, at least - that it's constriction rather than blockage that plays havoc with his heart from time to time.

And that comes back to smoking and stress.

So we'll work on those. There's one and only one stop-smoking aid he can use. The nicotine patches, all that, are just as bad for heart patients as cigarettes.

A new product, Champix (sp?) works to make cigarettes taste bad to a smoker. Sort of like Antabuse for an alcoholic, I'd guess.

But Walter's insurance doesn't cover it, and it costs $101.00 at the Sam's Club pharmacy. This will require some thought, and some negotiation with Aetna. An attempt, at least, to get them to understand this is medically necessary.

I have some interesting new developments on my infection-fighting front too. My IgG is still low; I've found a local allergist/immunologist who gives IgG treatments - that's rare - and is also willing to take me on as a patient, despite my CA MRSA carrier status. That's rare too.

His staff didn't seem too happy about it. They did the Giant Step Backwards, every single one, and opened all doorknobs for me - using paper towels - and hand-sanitized every chair I sat in almost as soon as I got up. Didn't smile at me any more either. Poor fools.

The minocycline has discolored my legs so badly the ID doctor said to stop taking it for now. She wants to see if we can do a sensitivity test on that third antibiotic before trying the hospitalization thing - that was her plan last spring, to keep me for at least one night to see if I react to the new antibiotic. If I can handle the med but it doesn't work on the infection, then she'd incarcerate me for 7 weeks of IV treatment.

One reason she's holding off a bit is because when I came back from my summer odyssey, the lumps in my right arm were noticeably smaller. In other words, the combination of Cipro and minocycline was working - slowly, but working.

However: When I stopped taking the minocycline a few weeks ago, two things happened. I burst out in little skin surface MRSA infections from head to toe. Scary. They didn't clear up with Silvadene like usual.

Here's what else happened: Two days after I stopped the minocycline, I had the worst rheumatoid arthritis flareup I'd had in years.

It was excruciating.

And one of my knuckles in my right hand has been growing in front of our eyes ever since. Every single day it was bigger, until yesterday. Walter and I kept checking it, and yesterday, finally, it was no bigger.

But the next finger over? Looks like it's sprouting a new mess now, itself.

I tolerated it as best I could for about a week. The pain was excruciating. Terrible. I went through my oxycodone way faster than I wanted to, and knew it wouldn't last out the month. That was when I only took enough to keep me from screaming out loud.

So, yeah. I started taking the minocycline again.

The pain resolved. Not gone, of course; but almost back to where it was. Only a little bit worse than before I stopped the antibiotic.

There have been cases of minocycline - an antibiotic - helping people with rheumatoid arthritis.

But why?

RA is a classic autoimmune disease. Why in the world should an antibiotic help an autoimmune disease?

The RA doc is having no end of interesting fun with this. When he saw all the new lumps in my joints he did a bunch of xrays. There were no bony changes and no discernible tissue changes - he compared these to some xrays he took in 2003. The huge swellings were still mostly fluids and inflammation.

Naturally, I thought I'd dodged a bullet. OH, I got all smug on him.


He explained to me that the permanent bone damage takes time. First comes what I have now. The bone malformations take longer.


I have bone cysts all over, had them for a long time. No changes in those. But they aren't a very bad source of pain, and they don't really malform your bones and joints.

See, since I was eight years old, I had a type of RA that just hurts. I wasn't a candidate for the plastic knuckle crowd. They LOOKED fine, mostly. I liked that arrangement.

I always knew it might not stay that way. The docs always made that clear.

And now, with the CA MRSA and the disseminated HSV-1 and the mycobacteria chel. abscessus, and being generally immunocompromised, and having low IgG - I am absolutely not a candidate for plastic knuckles.

Not allowed for people like me. The smallest surgery of any kind is way dangerous. Surgery that inserts any kind of foreign object into my tissues is far more dangerous than that.

So now, if I'm heading in the direction where I could benefit from plastic knuckles to replace my messed up ones...sorry Charlie. No can do.

Ah well.

As I explained to the ID doc, I really don't care what the minocycline does to my appearance, as long as it keeps me safe. Let me do some IgG booster therapy first. Then we'll look at the antibiotic array again.

So yeah. I'm gobbling it up, just like before.

It's my friend. We get along just fine.


Desert Cat said...

Zoiks. I knew something was up, but not what. Yeah, I'd choose discoloration over excruciation.

Clear vessels is good too. That means he probably doesn't need to be so restricted on his diet, which may help with quitting smoking. There's nothing worse than being squeezed on multiple fronts. If you can have another bite to eat instead of a smoke, well, one is better than the other.

Jan said...

k..I can see why you wouldn't want the "plastic knuckles."

I'm glad Walter is better, and I wish you were, in completely well, but I know that you deal with everything with great courage and optimism, no matter what.

k said...

DC, you are 100% correct. All those changes at the same time can be too much. They're losses. You go through that same mourning process as when a loved one dies.

I told him after his bypass surgery that if he'd stay off the smokes, I could cut him more slack on the diet end of things. Now I made sure he knows it's still true today.

It's hard for any addict to appreciate the full meaning of the state of addiction, until certain things come to pass. For smokers it can be worse. Too much public attitude still says, --Oh, it's not really an addiction like heroin...

No. It's worse.

Seeing how hooked he got again, and how fast, may have helped him understand it better now. I truly fear cigarettes. I was massively addicted to them; after I finally quit in 1995, I couldn't buy them for Walter for many years. I was afraid of even touching a pack.

Once he quits again, I think he'll accept that he can't ever have even one, ever again. Ever, for any reason.

And I knew you knew something was up. That's why I didn't feel bad about being so uncommunicative with you lately.

Handy, that. ;-)

Ah, Jan. It's ironic too, though. I mean, here I was, having accepted that plastic knuckles can really be preferable to the things the *real* ones can put you through.

And now that they don't horrify me like they used to, I can't have them.


I'm doing fine, truly. I'll continue to try hard to live up to your opinion. But I tell you true, most of it comes right back to the simple - but great - blessing of being born with a wacky sense of humor.

sue said...

Oh, my gosh... it just never ends for you!

I'm just catching up. Good news about Walter, you? Not so much. Wow. Take care.