Thursday, May 25, 2006

Pain Mismanagement

My own visits with the medical folks aren't all nicey nice like the last couple of posts I did. No.

I pay special attention to those good ones. I know full well how very bad it can be.

And - while I hope this doesn't sound like I'm glad you're in pain - reading so much from you others out there, with bad pain problems of your own, reminds me I'm not alone. The last few days, I've really leaned on that.

My primary care physician recently retired. He sold his practice to the guy next door. This new doc is now my new PCP for one reason only: He also hired the old doc's staff. And that staff has kept me in complicated HMO referrals to my 15 regular specialists, and free samples of Flonase when I was broke, and in timely refills with hurricanes approaching, for many years now. Docs are a dime a dozen. Believe me, great *gatekeepers* are worth their weight in gold.

The new PCP, perhaps seeing a big fat paycheck, told me at my first meeting with him last month that I had *too many specialists* and should transfer all those medical issues to HIS office instead. Saves me $15 per copay! Of course, I've never met some magic number called The Perfect Number of Specialists. Unless, of course, it coincides with the Number of Specialized Medical Needs one has. Especially when half of them are world-class medical scientists trying to figure out things like how to deal with my stubborn mycobacteria, and the PCP in question is just a small town one-trick pony.

I did, however, want to dump this idiot diabetes doc I got. Also, my excellent Pain Management Specialist knows I'm broke and live about 20 minutes away - a long drive, down here. Since federal law requires me to actually SEE the doc on a monthly basis, and get an Original *Hard Copy* prescription - no refills, no phone-in prescriptions, the law requires me to drag my sick crippled ass there in person every month - anyway, so the Pain Management doc had a suggestion. See him a few times per year, especially for anything like changes in prescriptions. But for the standard refills on the pain patch, just go to my primary. He could send any records, outline of the treatment plan, etc. the PCP would want.

Good idea.

The new PCP seemed like he was all over that, last visit. In fact, HE brought up taking over from the specialists before I even mentioned it.

So I did like he said, and cancelled the appointments with the pain doc and the diabetes doc, and requested the pain doc's file copy and so forth.

Well. He must have forgot. Or something.

Because he wrote the patches refill for only a 2-week supply, not a month; then did that a second time; then wouldn't write them any more.

But he didn't tell me that. I only found out after several frantic calls to his office. You don't just STOP taking those meds out of the blue.

My great pain doc was really put off by this. He felt suspicious. He said, You can't just go around switching pain treatments like this! And he's right, my God, we're in a state that jails pain docs every chance it gets, on any flimsy excuse. This is dangerous behavior here.

I was Not Happy with the effing new PCP. I had no idea WTF he was up to, and I really resent being blamed for something someone ELSE did. I also resent being scared I wouldn't get my pain patches filled on time.

I had my second meeting with this PCP yesterday. Down below is a copy of the letter I sent the pain doc, Dr. E., after that meeting.

And just in case you wondered? Dealing with this kind of shit can be so emotionally draining, so depressing, that I can't do anything else all day, sometimes not for several days. Can't cook or clean or garden or post.

It's always hard. But in Florida, it can be devastating. It took me two years to find a truly good pain management doctor. I can't function without pain treatment. In my case now, that means narcotics. The pain is that bad. To lose him would spin my world out of control.

Dear Dr. E:

This note is to update you on the recent actions of my new primary care physician.

I gave him the benefit of the doubt until my second appointment. I'd heard he's a decent doctor, so maybe I just got lost in the shuffle. Acquiring Dr. M's practice meant a huge patient load increase, and naturally some disorganization. I'd held off on the new PCP's directions to transfer my care from my specialists to his office, except for pain management and diabetes.

I saw him yesterday, 5/24/06. I said that the way he handled the pain management had damaged my relationship with my pain management doctor. I said, --I followed your instructions. I canceled my appointment with Dr. E and requested the file be sent here. Then instead of filling the 30 days' pain patch prescription, only 2 weeks were filled. After that, again, only 2 weeks. I don't understand what's going on.

His response was this: --That was just to get you by until you saw Dr. E again. [???] This office will not prescribe pain medications for its patients.

I said --I only did what you told me, to transfer the monthly refills over here. He simply repeated, --No, no pain meds from this office.

I said, --That's an absolute right for any doctor. I would never hold that against anyone, ever. But I need to know what's going on. If that's the decision now, fine, that's up to you, but it's NOT what I was told before. We need some communication here.

Then he said --I see you were a no-show April 24 at the diabetes doctor.-- This is a total fabrication! No one likes to be accused of misdeeds they didn't do. I said, --I was NOT a "no-show." I cancelled that diabetes appointment, I was very ill.-- That’s true. I didn't add that also, the PCP had INSTRUCTED me to cancel it!

I told him very carefully: --The result of the actions on the pain meds was this: Sunday night I had an injury. I went to the ER because I'd ripped my big toenail off. The nailbed is so badly damaged they don't know if it will ever grow back. The breakthrough pain from this injury is intense. And now, because of what's happened, it looks like no one is willing to write me a small prescription for oxycodone to carry me through until it starts to heal. It was starting to feel better yesterday. Unfortunately, now it's infected with MRSA and it hurts even worse than before. Do you want to look at it? Here, take off the bandage and see.

He did. Of course, he didn't see the yellow discharge because I'd just carefully cleaned it all off and applied fresh Silvadene and a surgical dressing the hospital supplied me.

He removed the gauze. I removed the bandage underneath and tried to hand it to him for biohazard disposal. He didn't take it. He then wiped the cream off of the raw infected wound - scraping the infected part, horribly - and glanced at it. He said nothing. Then he put two bandaids on it but no antibiotic cream! Since he wouldn't take the contaminated bandage from me, I finally put it down on the examination table, but there was no paper there.

He left it there and walked out. I finally disposed of it myself on the way out the door. Now his exam table is contaminated with MRSA. He either didn’t notice or didn’t care.

I told him I need surgery on my tenosynovitis, and the surgeon requested a medical clearance from my PCP. He angrily said, I can't just go around giving patients medical clearances! How I am I supposed to know what they want?

I said, the hand surgeon's office says if you have any questions, please feel free to call them. They said labs would be required for the clearance. I already did them, they're on top of my file there. That's for you. I'll also need a clearance from my infectious disease doctor so I'll see her next.

He did, at least, give me a physical and EKG, and finally said he'd give me a medical clearance, good for 30 days. I don’t want to continue with this PCP. He either completely forgot what he said about the pain and diabetes specialists, or changed his mind and didn't bother to tell me. Either way is the wrong way to do things. I also find his approach to sterility outrageous. This is unsafe for other patients, and for myself too.

Dr. E, I try hard to calmly accept what life has dealt me. A word I almost never use is this: Suffer. What that new PCP did made me suffer. I did nothing to deserve that. I did everything I was supposed to do. I feel he betrayed my trust.

We can't control the actions of others. I did nothing worse than carefully follow his instructions. I can't change what he did.

All I want to do now is continue monthly appointments with you as before. I don’t care that the copays are higher. Please, don't hold his actions against me.


MistMe said...

I just want to let you know I empathize. I am sorry for your hurt, and the troubles of life.

k said...

Writing a post like that isn't easy. Reading it, I think, may be even harder.

But most difficult of all is to write a comment in response.

So thank you, mistme, very much. It helps me, it makes me feel less alone.

Catfish said...

You have it worst than some of us in Georgia.

k said...

None of the states is safe, because the federal DEA is behind a lot of this. Excuse me, Christian and/or right wing fundamentalists, but that's where this politics came from. Believe me, I KNOW you don't all agree with the *war on legal drugs.*

Maybe because Jeb Bush is governor, Florida seems to be the worst state of all for the jail thing. They put the docs in jail, and sometimes the patients too.

One patient from New York moved to Tampa, and they decided he must be trafficking just because he went through a lot of pain meds. He'd been disabled from a terrible back injury since he was 22 or so - lots of surgeries, everything.

There was never any evidence of trafficking. But he got 25 years in jail anyway.

He says, the funny thing is, now is the only time in his life that he's ever gotten enough pain meds. In jail, they give it to him.

Ha! Maybe we should all get together and open our own jail for ourselves. A volunteer jail. We could get only the few good docs in there, and have all the meds plus the really good massagers and accupuncturists and whirlpool baths - you know, whatever different things work for different people. It looks like we mostly are good cooks so we could pitch in and do our own eats. Grow our own veggies too.