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Kathy
Unregistered User
(12/31/02 1:56 am)
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From Kathy on FMD, doctors and Inurance - a direction
--- In Fibromuscular_Dysplasia@yahoogroups.com, "Kathy MacLellan"
<kmaclellan@w...> wrote:
> I've been doing a lot of thinking about some of the issues at hand. I believe that if I had been appropriately diagnosed last April when I had the "kidney stone" that did not show on IVP, that
left all docs scratching their heads, that I would not have had the hemorrhagic stroke and lost my kidney.
>
> I think we are up against more than just educating physicians, however. (And I think this ties back in with the issue of rare/not rare). Physicians have to justify to managed care companies (there are utilization reviewers out there monitoring the docs) why they are ordering rather expensive tests. My recent MRA ran around $4,600. As long as the insurance carriers are calling the shots, our ability to ensure that the docs order the appropriate tests are
hampered. I do believe that in my case there was justification for an MRA of the abdomen - I arrived at the ER literally screaming in pain - and they never detected (although suspected) a kidney stone.
An IVP indicated an absence of one and nothing more was done. After the stroke, which was put down to 'rapid onset hypertension' (read renal stenosis), the explanation was that I was in my 50s, and
people in their 50s get hypertension all the time. No MRA was done. It was not until I AGAIN was admitted to CCU with bp of 225/115 with an 80 yo mother who was PISSED OFF and demanding that they figure out what was wrong, that a nephrologist was called in,
the MRA was done and renal stenosis was discovered. I was told by several docs before this test was done that hypertension can be caused by so many different etiologies that it is TOO EXPENSIVE TO LOOK FOR THEM ALL.
>
> Blue Cross/Blue Shield of NC does not have fibromuscular dysplasia in its data banks as a Dx for any patients in this state. Which means that NO BC/BS subscriber (and it is the largest carrier in
this state by far) has ever been diagnosed with the disease until me.
>
> What we are facing, my friends, is making profound changes not only in the way(s) that physicians think, but how insurance companies think. Yes, in the long run, it would have been less expensive for BC/BS to have paid for that initial MRA - had it been
done. Remember, that from an actuarial standpoint, we 50 are insignificant when it comes to paying for our illnesses as opposed to paying for a MANY MRAs (most of which will prove negative). If a physician orders too many, s/he may lose a contract with an insurance company.
>
> We accountants/finance folks become very pragmatic when dealing with costs/benefits.
>
> My interests related to my doctoral work have been focusing on patient-driven healthcare - in the form of medical savings accounts, in which the PATIENT and not the insurance company (or even the physician ultimately) makes the decisions. There are a number of
folks out there involved in this very political issue - for as long as the IRS allows employers to pay for employees' healthcare insurance as a nontaxable benefit, they will continue to do so in some form, rather than pay more salaries, therefore more payroll
taxes.
>
> Just my two pennies on a Sunday am.

fireballtampabayrrcom
Unregistered User
(6/18/03 4:06 pm)
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New victim
I am a new victim of FMD. Just had angioplasty to the right renal artery. I am looking for answers on what to expect in the future and how to help find a cure.

LindseyH1
Unregistered User
(9/28/03 10:05 am)
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Fibromuscular Dysplasia
Hi,

I saw your comments on the fmdfaqs.com website. I also have FMD and live in Orlando. Was diagnosed 2 years ago and started this interesing journey. If you are having problems with a good nephrologist, I have one in Orlando who knows about this disease. I also have a good vascular surgeon who knows about this disease. They don't know alot, but more than most of the other ones I have run into. The ignorance about this disease among the doctors is disgusting.

I have a 70% blockage in my right renal artery, some in the carotids (will know more after my next ultrasound next month), take 2 BP meds a day and baby asprin. I was just told my chlorestoral is to high and if I don't get it down they will add another drug to my list.

Let me know if I can be of any help.

Lindsey

patty silverthorn
Registered User
(1/25/04 3:32 pm)
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FMD
Lindsey,

Just saw your response from last Sept. So sorry it took so long for me to figure out how to use this chat board.

I live in Lakeland, very near you! I also had renal closure in the right renal artery and had an agioplasty last June 6th, 2003. My BP went back up within a month. My cardiologist finally admitted in Dec. that perhaps the artery was closed again. I had another angioplasty on Jan. 8, 2004 with a camera inserted this time, and sure enough one of the four closures from last June was not open. The camera shows that this latest angioplasty has worked. My BP is somewhat better, but I'm still taking 3 meds. I am now going to see a urologist on Feb. 11th, because the right kidney is draining very slowly (maybe a stone, but I suspect permanent damage).

Please update me on your condition and how you are progressing. We need to keep in touch, as you are the only person in this immediate area that I know has this problem. Perhaps we can pool resources, recommend doctors etc.

Patty

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