|From Compassion and Goodness|
Hi MDVIP Go-ToGuy,
I have to thank Nathalie at Dr. G's for suggesting that I try to get you to have more control over the specialists that are handling my care. They're great, talented, and all have tunnel vision.
This morning I had another experience like the one last Tuesday, a rapid and distressing temperature spike, with dripping sweats and a heart rate ranging from the 50s to 120s -- within a half-hour of doing my first antibiotic infusion of the day. You'll forgive me, but I had already had 2 Endocet for pain (=650 Tylenol), so I dug up my bottle of ibuprofen and took 800 mg, got in bed under a heavy blanket, and just got through it.
The second infusion -- about 2 hours later -- also brought on a reaction, but a smaller spike. I hit 102, nothing near the 103.5 from last week, but it felt pretty awful. This time I added ice packs.
THE PICC LINE IS INFECTED, it has to be. Both of Dr. B's PAs, Susan and Jacqueline, came to that conclusion last week, but he overruled them, saying that even if it is, the cefepime should "cover" me according to whatever grew in the blood cultures. It only occurred to me today to wonder if my aortic valve is at risk. Wouldn't that be a hoot. But there's no "hardware" in my heart, so blahblahblah!
Outside the semi-crises that occur with infusions and flushing the lines, the rest of the time, I am exhausted, in extreme pain, but forcing myself to be an admirable domestic.
The pain in what-was-formerly-my-shoulder is worse. Now this could be because I am forcing its use, trying to grow some of that scar tissue that supposedly will one day function like muscle. But who knows? The hip pain is now in both, with the right remaining much worse.
The spasms are back, as well as blood sugars that defy logic. That's at 50 units of 70/30 twice a day and sliding scale before meals.
I'm going to put my four years of experience with prosthesis/bone infection to the test, go out on a limb and cry, "infection!" And my specialists are all going to look at each other but no one is going to look me in the eye. If this is going to kill me out right, or some complication of it, just tell me It won't be a shock.
So long as I have an ID doctor who doesn't even check my weekly CBC results -- only blood culture results matter -- and a super shoulder specialist who only looks at... shoulders, etcetera -- I don't have a chance. Yes, I believe there are some of those nasty bugs in my hips, so making the appts to see Dr. S's team is smart. But I'm exhausted, depressed, and tired of telling this story to doctors who then look at ME as if I'm crazy.
I can tell you now that he'll order a "tap" of the hip under guided fluoroscope, they won't get anything to work with, and he'll say, "well, everything looks fine..." I've had 10 taps, without results, that turned out to all be in infected areas.
Speaking of crazy -- I think my brain is infected, or that CRPS is having more of an impact up there than I expected. For the first 15 minutes or so at the start of every episode of spasm, I am suicidal. That's not an exaggeration, I am not trying to get attention. It lasts almost exactly 15 minutes and it is a real struggle. Then, I cry a bit, and it's gone. Not the spasms, of course, they hang around for hours! I use the mantra of "it's only 15 minutes," but one day, that 15 minutes is going to coincide with something else, and that will be that.
I've passed out twice this week, both times during a transfer from bleeping wheelchair to the bed -- if you have to have a brief black out, doing it on the bed is a good choice. I am trying to drink more, because it's got to be dehydration...
Beyond a puerile "please just make it all stop" request, is there some way to draw up a plan, slow things down? I always feel like I need ID help right when they have checked off their to-do list of 6 weeks of X and 4 weeks of Y -- because I go by symptoms, and the rousing sense of failure that hits when they say "we're done, call us if you need us!" Same deal with Dr. D -- now that the shoulder is gone, why should he care that the pain is worse and eerily familiar to earlier pains from infection? And, trust me, there's no one to call during my 15 minute dalliances with suicide -- or if I did call someone, it would be a CYA response. Who do I tell that I am just crazy enough to think my brain is infected?
So... when you were signing up hale-and-hearty patients for the preventive medicine you were hoping to practice via MDVIP, you must have rolled your eyes to see that I wanted to tag along, eh?
Ah -- the worst fever symptom of all? Over 101 degrees and I want all physical issues solved, as of yesterday. I am also rude, weepy, and annoying, even to myself. I hope to avoid a hit of spasms with these fever attributes -- I wouldn't be able to find a single reason to justify my existence, not in a mere 15 minutes. My reason for living is Fred -- not love of Fred or even fondness of Fred -- but the need to be able to leave him a little more money than I have right now, and with organized finances, and a house in good repair. Otherwise, he will be lost.
So what can my MDVIP Go-To-Guy pull out of his hat to help this mess? No, thank you, I don't care to speak to a counselor or a psychiatrist -- that detracts from my primary objective of accumulating massive amounts of wealth to bequeath the guy snoozing in front of his computer, oblivious to all...
This time, I thought, I might well get a "cease and desist" courier-delivered letter on fine linen stationery, thanking me for having made his practice so much fun and encouraging me to go spread enjoyment elsewhere. The main thing, you're just not supposed to use the S-word. I use it and use it often, as part of my effort to use the most appropriate word for sign/signifier/signified/referent. I got bit with the Saussure bug.
You Readers are pretty sharp. You might well have already imagined MDVIP Go-To-Guy's response, which I just got, right in the middle of a weep.
Sorry for the late response. To be honest with you, I read this late last night but was so overwhelmed by the email, I wasn’t sure how to respond.
Your issues are clearly not simple and this is way out of my expertise.
The only thing I can suggest is that I call and speak with Dr. B myself to get a clearer understanding of what his plan is.
Unfortunately, I am leaving town in the morning for a much needed vacation...
I will try and call him [on my return].
I’m sorry that I cannot give you any better advice than this but I truly have no other ideas of what to do.
In my 23 years of practice, this is clearly nothing I’ve ever dealt with and I must rely on the specialists for advice and guidance.
The office will be open with Dr. K manning the ship in my absence. J will be here.
If you’d prefer to see me for an appt when I return next week, I’m happy to see you.
All right, MDVIP Go-To-Guy, I've hit upon a brilliant plan.
You need a vacation (of that I am sure!). I need a vacation, too.
So I'll make some version of one... maybe do a virtual world tour, immerse myself in the Olympics, remember how to laugh again. Renew some of the family relationships that oddly seem to start up again after someone dies (very perverse, that).
Maybe I should try doing a good deed now and then.
So... let the vacations begin, PICC lines, and brain dysfunctions be damned!
You are possibly the best doctor around -- but don't get a swelled head. That's MY purview.
So once I publish this, you will have, and I will have, proof tangible, bolded and in color, that I am far from alone, far from uncared for, and that fighting that 15-minute fight -- for now -- is worth every bit of the effort.