Re: LA/ Kidneys/ post from H

[Guest guest]

This post was sent to me from in regards to my UTI. She has kidney

problems and knows quite a bit about it. It may help you in getting help.

<<

Take your most recent blood tests with your, in particular an ESR and blood

count for the last week or so. Take a printed list of all the medicines

you take and a short history of this particular problem telling what tests

have been done and what meds you are taking. You will have to fill out one

of the patient history forms and there is never room for all the meds

(including supplements) or for an accurate history of a problem.

Mention that you have had heart valve surgery and, of course, your

antibiotic allergies in separate paragraphs. Describe the reason for the

heart surgery briefly.

List the names, addresses and phones of all the doctors who have treated you

in the last year and why you have seen them.

You may need a Nephrologist rather than a Urologist if it is in the kidneys

and not just urinary tract.

You should ask if a CT scan or other imaging proceedure would show granuloma

or inflamation in the kidneys themselves or reveal any problems in the

Urinary tract that is unrelated to ecoli. Ask the doc if he knows if there

is any collagen II, IX or XI in the tissues that are affected....those are

the factors for RP inflammation. If he says does not know then he is

probably not ready to accept the possibility that you are in a flare

affecting those organs.

You may need to get cystoscopy (done by Urologist) to be sure that your

bladder is not bleeding because of a medicine you take or because of the

ecoli. Ask the urologist if high dose prednisone can cause bleeding

bladder. Also call his office and ask if you should discontinue that

" orange pee " stuff before you go there in case they want a UA sample.

If there is evidence that it is the bladder that is bleeding that could be

good news -- the kidneys may not be that badly affected.

For cystoscopy you have to void thoroughly just before but you also have to

provide a urine sample at the same time so if you feel the urge while waiting

for that proceedure make sure you ask about whether or not they want a sample.

I wonder if there is any way for a urologist to " wash " the bladder and UT

with an antibiotic without triggering an alergic reaction.

If you go to a Nephrologist ask the preferring physician to be sure that the

one he selects has had experience with vasculitis and/or RP patients and with

patients on all the meds you take. Ask him to please discuss your situation

with the doctor before you go to see him so he understands that inflammation

from vasculitis is often misdiagnosed as an infection or cellulitis. It is

only when it does not respond to antibiotics that anyone pays attention to

other possibilities.

Take copies of the same typed history and meds info that you take to the

urologist to a nephrologist.

Tell him this is urgent and you need to see a nephrologist quickly - not as

a new patient who has to wait six weeks for an appointment. Usually the

referring doc can fix it so you get in right away depending on how urgent he

makes the referral (it must not be " routine " ).

The nephrologist who saw me in the hospital when I was first diagnosed said

that a kidney biopsy would be in order only if there was still some doubt

about the diagnosis. He said that kidney biopsies are notoriously

inconclusive because there is often very little tissue to biopsy and it is

the nature of systemic problems to leave little or no signature except

granuloma or evidence of necrosis that could be attributed to any number of

other causes. He felt that a kidney biopsy in my case would be a wasted

effort because my diagnosis would probably be found with the lung biopsy and

blood tests. Since you know you have RP you would have to discuss exactly

what he would be looking for if he suggested a biopsy and also how conclusive

that kind of biopsy might be.

I don't recall -- have you increased your pred? What is the status of the

rest of the flare you reported? If it were me, just on the possibility

that the kidney problem is a flare that is exacerbated by ecoli I would ask

the doc about increasing the pred even more. I would not decrease it until

this problem is controlled if it were me. I hate high dose prednisone but

kidney damage is not something I would prefer.

Be sure to ask if there is a way to determine if the " count " of ecoli is the

same as it was in the beginning or if it has changed -- higher or lower --

and if that would have any significance regarding your treatment.

Also ask about adding another anti-inflammatory drug. Be sure to tell any

doc that you have had heart valve surgery because I understand that some of

the better new drugs like Vioxx are not compatible with some heart problems.

I wonder if pulse prednisone is not off limits because of your heart.

I will be praying for you...I sure hope they are able to pin down the

problem(s) here.

>>