Thursday, May 25, 2006

in defense (again) of the prothestitute

Thank you VERY much for the comments to yesterday's post, AND the support.
Awesome :-)

I wanted to address Jodi's comment specifically...about perhaps finding another prosthetist.
Well, Jodi…You raise some valid points!
And perhaps I should become a Canadian…I hear the health care options are fantastic!! LOLOL

Here’s what I’m dealing with as an American, who does not have enough dough to buy her own prosthetic care out of pocket, and who is also currently insured by Kaiser.

When you are someone like me (someone who needs an assload of rehabilitation), Kaiser gets you lined up with a Physiatrist…a doctor of Physical Medicine… and in my case, it should be one that specializes in Rehabilitation.

It might be interesting to note that the first physiatrist I was referred to at Kaiser was indeed a rehab specialist, but he didn't specialize in amputees. He did have a clue, sure...but it was not his forte. He was a "back injury guy".

I had been automatically referred to the closest physiatrist to my home. I didn’t understand that I had options and could make a choice to choose my own physiatrist (up until my accident I have never had to navigate a medical system before--I'm becoming an expert, not by choice though).
When I found out that I had some choice as to whom my physiatrist could be…I did some research and found a really good one, one that worked with a whole lot of amputees, and one that also had a reputable team of specialists behind him. Even if I did have to drive farther to get there.

So what exactly is a Physiatrist. In my experience, a physiatrist is the person that keeps track of your rehabilitative progress, assesses what your course of treatment should be, and then makes referrals to specialists that tend to your specific physical issues. In my case, specialists would include an arm therapist, an arm/orthopedic surgeon, a prosthetist to make a fake leg, and a physical therapist that can provide gait training (ie walking). They are a team. They form a circle.

So a Physiatrist is basically a case manager. They don’t need to be a complete expert about orthopedic surgery or making prosthetics. They need a clue, sure…and my current one definitely has a clue…but they don’t have to be the expert in everything…and there is no way they could be. A physiatrist should manage their patients cases based on reports they get back from these other experts. These experts need to be professionals that the physiatrist can trust, because it is with these reports that the physiatrist that will be making recommendations as to how to spend the Health Plan’s money, basically.

In my experience, it is the Physiatrist that is the link between the medical team and the people with the money.

If the Health Plan People say that I should not be covered for some particular course of recommended treatment, and I am denied a particular treatment, a good Physiatrist will fight for their patients to be covered. They will rebut against denials from the Health Plan. But a Physiatrist seems more prepared to make that fight if they feel they can trust the experts they referred their patient to, and trust the experts’ reports.

Do you follow?

So as it stands today, I now have a reputable Physiatrist who specializes in Rehabilitation. He has developed a team of experts who have proven to be efficient (and unwasteful with plan money…experts not trying to bilk the system), and because my Physiatrist is so reputable and his team is respected, the Health Plan rarely refuses my Physiatrist’s recommendations in the first place.

So for example, in regards to my arm, my physiatrist has referred me to an occupational therapist specializing in arms…and she checked my range and abilities, etc, and created a physical therapy program. I performed the prescribed therapy, she then measured my improvements. She reported her findings back to the physiatrist. The therapist's report was that I be referred to an orthopedic surgeon, because issues still remain. And because the physiatrist sees the physical therapist as a trusting member of the team, so the physiatrist referred me to the surgeon. The orthopedic surgeon in turn, trusts the therapist and the physiatrist, and as I get ready to have a surgery this fall on my arm, the Health Plan probably will not argue the neccessity of the surgery. The circle of players in this medical team has proven themselves reputable.

Still with me?

It’s a very important system. Even though nobody really explains this all to you, knowing that this sublte system of trust between specialists is in place is crucial in your success as a self-advocate within this Health Plan.

So here’s how this relates to the fake leg.
My physiatrist also works well with my prosthetist. And both of them work well with the physical therapist…another circle. It’s a good circle. They are an effective team. I’ve checked their results.

I do have the option to break the circle and get a different prosthetist…but it’s a small list of prosthetists that will work with Kaiser. Secondly, if the new prosthetist says the solution is that I need a new $30K leg, he has to give that prescription to my Physiatrist, and then I have to hope my Phsyiatrist will help me get it though the Health Plan so that it is paid for. Authorization might not happen.

Back to the prosthetist.
Why then, does my Physiatrist trust my Prosthetist??

Well, for all my bitching about his bedside manner, and I’ve said this before…
he’s a fucking genius.

Unlike any other prosthetist I have spoken to (an I DID go visit a few others outside the circle, just to see what was out there…even if it did mean paying cash) my prosthetist is the only one I met that was willing to address each amputee individually enough to include making something completely custom to solve unusual problems (and I have some unusual particular fit problems). He will make something custom, even if it means that it doesn’t follow normal logic, conventionality, or “standard procedure.” He's not afraid to experment. He is his own shop, and he doesn't need approval to get creative or think outside the box. Prosthetists working for corporate O & P companies probably hate him.

But I’m not sure my prosthetist has ever worked with someone quite like me. Besides being an advocate and a tart, my demographics are just not the same as the bulk of his practice.
Most prosthetists work primarily with amputees that are low functioning, geriatric, and have diabetes or vascular issues. He does have a few active folks with traumatic amputations that just kinda want to be able to do "life as usual". And he has also had a couple of hard-core athletes. But if you look at the number, high functioning amputees are a smaller slice of pie on the pie chart.

So here I come in, just wanting to do life as normal, sure…but also wanting to dance. I’m not an “athlete” per se…and I am his first dancing amputee…and I honestly believe that I am one of his first patients who really cares about what my prosthesis looks like. I think his older patients keep things under wraps and just wear pants, I think his more average ladies have just written off ever wearing mini-skirts, and his male gold medal winning cyclist dude patients could probably give a rats ass if their colors aren't coordinated. I have a hunch I might be one of his first patients who wants to look pretty.

Prosthetists beware though. You are about to have a new client base. Sadly, there is about to be an influx of young, strong, high-functioning amputees all around you. They are young war veterans. And you all need to start getting ready and willing to understand the differences amputees have in their needs.

In my first meeting with my current prosthetist, he told me outright (verbatim), “Don’t be afraid to tell me if something is shit. I like a good challenge. I will work with you.”

And he has lived up to that. And I don’t expect this recent row with him to be an unresolvable issue. I will tell him it is shit (he already knows though, I spoke with his office yesterday).

To tell you the truth, I would venture to say that his laughing at me was probably nervous laughter…not mocking…nervous because he saw the wrath of TheAmpuT on my face, and there we were, trapped in a little room and he had no place to run and hide.

I’m not making excuses for him, nor his assholery.
No frickin’ way.
Laughing was bullshit and he is to be lectured by me.
There shall be no escape.

He will address and correct each of my issues, and I have total faith that he will, because he has done so before. He will also listen to me.

I am taking it upon myself to educate him about how to treat a person that DOES care about how their prosthesis looks, and hopefully give him some contructive criticism that will help him grow as a medical professional.

If he laughs in my face again, though…
well, then yes. I’m going to need to consider a change in prosthetists. But that means going back to the Physiatrist, asking for a referral to a different prosthetist (one he probably doesn’t have established rapport with), hoping like hell the Health Plan allows me to go and be covered…do you see the loop here? I'll do it if I have to, but I don't want to jump the gun just yet.

I’m more for trying to work it out with this prosthetist. He has been the one and only who was willing to make me something that would at least stay on my leg….and I think I can help him grow with the bedside manner shit. Most geniuses aren’t great conversationalists, ya’ know??

He knows I have a blog.
I have no idea if he reads it.
One of his prosthetist buddies has read it once or twice, but I don’t know if he reads regularly or not (Hi, Ken!...dude, if you are reading, would you call him for me and tell him about the gold tooth thing from yesterday for me?? I'll bet you explain it more nicely than I will.).

Even before reading Jodi’s comment, I was thinking that yesterday's post was one that I should print out and bring to my next appointment with me. An appointment I just made for next Wednesday.
So stay tuned.


InkyW said...

I am just getting caught up on blogs. You truly are good at explaining things so that I can begin to feel what you are feeling. I'm staying tuned to find out what happens next and wish I could be a fly on the wall when you lay it on him.

We all forget the freedoms of choice we have. My wheelchair bound neice reminds me all the time just how impossible the world can be.

jodi said...

Argh. I forgot about the insurance hassles. It shouldn't be so damned hard to get what you need, it's what you paid into the insurance plan for all those years for. I do think he should read what you wrote, though. At least for me, it's always so much easier to say what I want with time to write and edit, rather than in the heat of confrontation.

BeanMama said...

I totally think giving him a copy of what you wrote is appropriate. Laughing was amazingly bad form. And all of your issues (I totally get ya,) are so very valid and important. I think you're a phenomenal self-advocate and one of the most articulate people I know.

Anonymous said...

It's really terrifying how completely at the mercy of other people we become once we get sucked into that circle of trust you've described -- a circle which does not actually include the patient, by the way. We get trusted last.

Let me know if you want me to give this guy a call. I don't know if it would help you, but it might make me feel better -- heh heh. Seriously, though, consider bringing someone -- viz., MIG -- with you. That way Genius Prosthetitute might actually listen to you, or at least sit still, while you lecture him.

Gray said...

I liked so many things about this edition of the blo and the comments that I don't know where to start, and I certainly don't have time to think about it. I have to get myself to the other side of Boston for a truly loathsome meeting. I guess I'm reduced to bullets

- Inky is right: What a good explainer you are! It was worth it to stick it through to the end to understand the complexity of youu are up against. I have not had any real health problems since I was a child.

- Lots of fun, creative language today!

- "Ken!...dude" A funny but interesting dialogue to imagine.

Oh well. Better go. Off the Department of Health and Humiliating Services.

Anonymous said...

This wouldn't happen in the Canadian system. Your prosthesis maker would be severely reprimanded or fired, your doctor would be bending over backwards to make it up to you and deliver what you need with the help of another tech.

But since you aren't in Canada and have to work with what you have, I think you're right to try to improve his "bedside" manner; to remind him that your self-image is just as important now as prior to the accident.

(8 months in rehab, but not for limbs.)

Anonymous said...

Insurance...where do I start. I'm still on the parents insurance right now, but that ends when I turn 25 next April. Then I'll have to figure out what I'll be doing as a self-employed musician.

I fought with my insurance company for six months before they gave me my C-leg. I went through refusal after refusal, and it didn't help that I wanted to go to a prosthetic company out of the state. However, I'm really glad that I did.

I think you have a solid plan. If you really tell him how you feel about the whole thing and you still feel uncomfortable, it will be worth the change. Hopefully it will go better.

By the way...I love the ampu-pants. Let me know if you make a pattern. Of course I'd be interested in the details!