Re: Function and Failure/

[Guest guest]

,

I may have missed one of your posts (forgive me if it has been addressed

previously), but I'm not understanding why you are having difficulty getting

your lab reports. I know that some nephs don't just hand them over, but if you

ask for them or make it clear that you would like a copy given to you at each

visit, you should have them! Rita

[Guest guest]

Oh - what an ordeal! You are entitled to those lab reports - how

incredibly frustrating. Good luck in your pursuit for a new doctor, hope you

find one soon! Hugs, Rita

[Guest guest]

Hi Rita...

Thanks for responding. I don't know what the reluctance is over giving a

patient their results from the viles of blood they donated. After my last

appointment this week I became a bit more 'sassy' in getting those results and

let me tell you, it was a quite the task. I was able to get results from the

Nephrologist secretary but she refused to give me the results from the lab

directly (the ones in which are printed with the test, the value and the

reference range). Instead I was sent a flowsheet that is used by the doctor

which only has the letter of the test performed and a value written in. Hence I

have spent many hours on the internet trying to decipher what these letters

(tests) mean and what value they are reported in. I'm still lost on a few of

them, which brought me to this website in hopes of finding others who can help

me understand what is what. I am currently in need of a new family physician as

the one I've been with for many years has left to begin a walk-in clinic and

isn't taking patients with him. I hope to find a doctor who is willing to allow

the patient to have some knowledge in their care and not just sit there and be a

'yes mam'...if you know what I mean.

....back to 4 years of deciphering! :op

[Guest guest]

Hi ,

That is pretty annoying that they won't just simply give you your lab

report, after all, it's your own information!

I actually never ask for a copy of my lab report. Instead, I always ask

very specific questions about my lab values and what they mean,

things such as " what's my creatinine level? " " what's the normal

range? " " at what level does it become a concern.

Usually after a few such questions, my neph usually then shows me

the data on the lab report, goes over it with me AND interprets it for

me, b/c it's just easier than me " interrogating " him.

Hope it helps,

Sophia

> Hi Rita...

>

> Thanks for responding. I don't know what the reluctance is over

giving a patient their results from the viles of blood they donated. After

my last appointment this week I became a bit more 'sassy' in getting

those results and let me tell you, it was a quite the task. I was able to

get results from the Nephrologist secretary but she refused to give me

the results from the lab directly (the ones in which are printed with the

test, the value and the reference range). Instead I was sent a

flowsheet that is used by the doctor which only has the letter of the

test performed and a value written in. Hence I have spent many hours

on the internet trying to decipher what these letters (tests) mean and

what value they are reported in. I'm still lost on a few of them, which

brought me to this website in hopes of finding others who can help me

understand what is what. I am currently in need of a new family

physician as the one I've been with for many years has left to begin a

walk-in clinic and isn't taking patients with him. I hope to find a doctor

who is willing to allow the patient to have some knowledge in their care

and not just sit there and be a 'yes mam'...if you know what I mean.

>

> ...back to 4 years of deciphering! :op

>

>

>

>

[Guest guest]

Hi Sophia,

Well, since I posted my little venting session of frustration I have

spoken with the hospital in which I see my Nephrologist and found the

answer as to why I have such a hard time getting my results...due to

confidentiality and new security measures put in place over the past

year or so, patients have to go to a specific section of the hospital

and request their results. Don't know why anyone who I asked about

getting my results couldn't tell me this information but atleast now

I know. My labs won't even go to my family doctor unless the family

doctor contacts the hospital with a written request!

Up until a few months ago I didn't give much thought to my diagnosis

because despite a few set backs here and there I didn't feel 'sick'.

Also because I haven't had a biopsy to officially diagnose what type

of glomerulnephritis I was dealing with, so it seemed to me that it

wasn't that bad of a thing to have. I didn't understand the ins and

outs of this disease, nor the effects that the 'set backs' have on

the ultimate function of my kidneys, so I didn't know specific

questions for my doctor. As well, I see my Nephrologist in a

hospital and the majority of hospitals in Toronto are teaching

hospitals so as a patient we see about 2-3 'strangers' before the big

kahuna comes in and my kahuna is intimidating to me.

Having said all that, I'm on the road to getting my latest lab

results. I've purchased a book about medical tests from a patients

view and it's very informative about each test, it's values and so

on. So once my results arrive via snail mail I'll be on my way to

understanding just what is going on.

Thanks for responding, it's nice to know that someone else had to

interrogate to get their answers! )

> > Hi Rita...

> >

> > Thanks for responding. I don't know what the reluctance is over

> giving a patient their results from the viles of blood they

donated. After

> my last appointment this week I became a bit more 'sassy' in

getting

> those results and let me tell you, it was a quite the task. I was

able to

> get results from the Nephrologist secretary but she refused to give

me

> the results from the lab directly (the ones in which are printed

with the

> test, the value and the reference range). Instead I was sent a

> flowsheet that is used by the doctor which only has the letter of

the

> test performed and a value written in. Hence I have spent many

hours

> on the internet trying to decipher what these letters (tests) mean

and

> what value they are reported in. I'm still lost on a few of them,

which

> brought me to this website in hopes of finding others who can help

me

> understand what is what. I am currently in need of a new family

> physician as the one I've been with for many years has left to

begin a

> walk-in clinic and isn't taking patients with him. I hope to find

a doctor

> who is willing to allow the patient to have some knowledge in their

care

> and not just sit there and be a 'yes mam'...if you know what I

mean.

> >

> > ...back to 4 years of deciphering! :op

> >

> >

> >

> >

[Guest guest]

Hi ,

I'm glad it worked out, altho I'm a little surprised that the dr or the nurse

couldn't just tell you where you could get copies of your lab reports.

It sounds like b/c you go to the hospital for your neph appts, I guess

they have to have lots of measures in place to keep your info secure. I

don't recall that this much procedure, usually my neph gives copies of

all med reports to my family dr as a matter of course.

Sophia

> > > Hi Rita...

> > >

> > > Thanks for responding. I don't know what the reluctance is over

> > giving a patient their results from the viles of blood they

> donated. After

> > my last appointment this week I became a bit more 'sassy' in

> getting

> > those results and let me tell you, it was a quite the task. I was

> able to

> > get results from the Nephrologist secretary but she refused to give

> me

> > the results from the lab directly (the ones in which are printed

> with the

> > test, the value and the reference range). Instead I was sent a

> > flowsheet that is used by the doctor which only has the letter of

> the

> > test performed and a value written in. Hence I have spent many

> hours

> > on the internet trying to decipher what these letters (tests) mean

> and

> > what value they are reported in. I'm still lost on a few of them,

> which

> > brought me to this website in hopes of finding others who can help

> me

> > understand what is what. I am currently in need of a new family

> > physician as the one I've been with for many years has left to

> begin a

> > walk-in clinic and isn't taking patients with him. I hope to find

> a doctor

> > who is willing to allow the patient to have some knowledge in their

> care

> > and not just sit there and be a 'yes mam'...if you know what I

> mean.

> > >

> > > ...back to 4 years of deciphering! :op

> > >

> > >

> > >

> > >

[Guest guest]

Hi Sophia,

Yep, I agree, it seems like it was a simple task for those in charge at the

hospital to just tell me that new measures have been placed in giving out

results and that I had to go to a specific place to get them if I wanted...but

you know the old saying... " the left hand doesn't always know what the right hand

is doing " .

The hospital I'm at is going through renovations and wing additions so I think

maybe this added to the confusion as well because where I see my Nephrologist

now is on a different floor of the new wing and it's amoung transplant patients

unlike a few years earlier where I was in a different part of the hospital and

on a floor just for Nephrology appointments and where his secretary is (now you

can't even get to his secretary unless you are hospital staff with a swipe

badge!). The staff at the check-in part where I'm at now seem like their all

just filling in from different sections of the hospital and thus I get the

ping-pong ball effect of being passed to all different places. It was

frustrating but as of last week my results are supposed to be in the mail from

last month's testing and in the future I'm hoping that the place I was told to

go to for a copy of results will be hassle free.

As for my question regarding home testing. I was just curious as to what

different people keep track of at home in between appointments because it

appears that your body goes through some major symptoms between the 2nd and 3rd

stage of CKD. I'm in the 2nd right now and some days I wonder if symptoms I

feel are kidney disease related, paranoia or something else. It seems like the

majority of people in this group are in the later stages and deal with alot more

stuff than we milder ones, but that's not to say we milder ones don't feel

stuff.

As well, my doctor a few years back told me to get a medic-alert bracelet and a

home blood pressure machine, so I do occassionaly check my blood pressure. It's

never been as low as my doctor wants it to be but it does creep up to the

hypertensive stage. Others in this group have commented about feeling worse

after a cold or throat infection. I've suffered for years with sinus infections

and have undergone surgery twice now to help correct the amount of infections I

get but to no avail. My urine contains large amounts of blood but I don't

actually see blood...my urine to me is always yellow or a little bit darker

yellow with bubbles. I just thought that if blood and protein where things that

equal kidney disease that I could home test with the dipstick when I'm well and

when I get an infection to see if there is any change...but the few responses to

my question don't mention dipstick testing at home, only blood pressure.

I'm the kinda person who prepares for the worst rather than hope for the

best...it's a character flaw I've yet to overcome, so I guess I'd rather test at

home for certain things to know before the doctor tells me something has

changed. Up until this past month's appointment I haven't taken much of an

interest in my kidney disease because I don't think it had set in... but after

this last appointment where I was told that I'm still stable as far as the

kidneys go but was in the pre-diabetes stage I got a wake up call. I'm weeks

away from turning 34 and I have 2 young girls...hypertension, cholesterol

problems, diabetes...these are all things I used to think affected the old age.

Pierre said it perfectly when he said that most Nephrologists are interested in

dialysis/ transplant patients because that's where their bread and butter are,

that coupled with the fact that kidney disease is a maintenance disease rather

than a curable disease kinda makes those of us who have been diagnosed in the

early stages feeling like their less important, when infact what I've learned

the direct opposite from being a part of this group. Knowledge is power and if

I can have the power to slow this disease down than I want to do everything

possible to gain it.

[Guest guest]

I never kept track of anything between appointments, except my blood

pressure. I checked it every once in a while just to see how I was doing

with exercise primarily, but I would go for long periods without checking it

at all - and even that was only after I was already at about 50% kidney

function. The follow-up intervals are usually appropriate, because nothing

can really happen in between. It's a bit different in pediatric cases and in

adult cases where heavy proteinuria is a problem. But the majority of IgAN

patients do not have heavy proteinuria.

Originally and for many years, as the nephrology specialty developed in the

1960's and 70's, nephrologists were internal medecine specialists who

handled dialysis (and there was really only one kind, as PD wasn't really

available until the very late 1970's). Patients usually didn't see a

nephrologist until they were in kidney failure, more or less, and until

then, they were simply followed by their family doctor. Then, as time went

by, they started seeing patients with earli kidney disease more and more,

long before they had renal failure. Up until almost the 1990's, you might be

referred to a nephrologist to determine what the problems was with the

kidneys, but unless there were obvious complications, you were then only

seen once a year, or not at all.

Pierre

Re: Function and Failure/

Hi Sophia,

Yep, I agree, it seems like it was a simple task for those in charge at the

hospital to just tell me that new measures have been placed in giving out

results and that I had to go to a specific place to get them if I

wanted...but you know the old saying... " the left hand doesn't always know

what the right hand is doing " .

The hospital I'm at is going through renovations and wing additions so I

think maybe this added to the confusion as well because where I see my

Nephrologist now is on a different floor of the new wing and it's amoung

transplant patients unlike a few years earlier where I was in a different

part of the hospital and on a floor just for Nephrology appointments and

where his secretary is (now you can't even get to his secretary unless you

are hospital staff with a swipe badge!). The staff at the check-in part

where I'm at now seem like their all just filling in from different sections

of the hospital and thus I get the ping-pong ball effect of being passed to

all different places. It was frustrating but as of last week my results are

supposed to be in the mail from last month's testing and in the future I'm

hoping that the place I was told to go to for a copy of results will be

hassle free.

As for my question regarding home testing. I was just curious as to what

different people keep track of at home in between appointments because it

appears that your body goes through some major symptoms between the 2nd and

3rd stage of CKD. I'm in the 2nd right now and some days I wonder if

symptoms I feel are kidney disease related, paranoia or something else. It

seems like the majority of people in this group are in the later stages and

deal with alot more stuff than we milder ones, but that's not to say we

milder ones don't feel stuff.

As well, my doctor a few years back told me to get a medic-alert bracelet

and a home blood pressure machine, so I do occassionaly check my blood

pressure. It's never been as low as my doctor wants it to be but it does

creep up to the hypertensive stage. Others in this group have commented

about feeling worse after a cold or throat infection. I've suffered for

years with sinus infections and have undergone surgery twice now to help

correct the amount of infections I get but to no avail. My urine contains

large amounts of blood but I don't actually see blood...my urine to me is

always yellow or a little bit darker yellow with bubbles. I just thought

that if blood and protein where things that equal kidney disease that I

could home test with the dipstick when I'm well and when I get an infection

to see if there is any change...but the few responses to my question don't

mention dipstick testing at home, only blood pressure.

I'm the kinda person who prepares for the worst rather than hope for the

best...it's a character flaw I've yet to overcome, so I guess I'd rather

test at home for certain things to know before the doctor tells me something

has changed. Up until this past month's appointment I haven't taken much of

an interest in my kidney disease because I don't think it had set in... but

after this last appointment where I was told that I'm still stable as far as

the kidneys go but was in the pre-diabetes stage I got a wake up call. I'm

weeks away from turning 34 and I have 2 young girls...hypertension,

cholesterol problems, diabetes...these are all things I used to think

affected the old age.

Pierre said it perfectly when he said that most Nephrologists are interested

in dialysis/ transplant patients because that's where their bread and butter

are, that coupled with the fact that kidney disease is a maintenance disease

rather than a curable disease kinda makes those of us who have been

diagnosed in the early stages feeling like their less important, when infact

what I've learned the direct opposite from being a part of this group.

Knowledge is power and if I can have the power to slow this disease down

than I want to do everything possible to gain it.

[Guest guest]

Hi ,

I think it's a very good quality you have to ensure that you try and learn

as much about the disease as possible. I wish I had done that myself

when I was diagnosed with IgAN at 100% kidney function.

It's great to learn more about the disease so that you have more

certainty and know how to cope. It's not so great if learning about the

disease causes more fear and pessimism, b/c at the end of the day,

the statistics at your stage are very much in your favour, in that it's a

small percentage who get to ESRD.

Coincidentally, I'm also 34. No kids tho.

Sophia.

> Hi Sophia,

>

> Yep, I agree, it seems like it was a simple task for those in charge at

the hospital to just tell me that new measures have been placed in

giving out results and that I had to go to a specific place to get them if I

wanted...but you know the old saying... " the left hand doesn't always

know what the right hand is doing " .

>

> The hospital I'm at is going through renovations and wing additions so

I think maybe this added to the confusion as well because where I see

my Nephrologist now is on a different floor of the new wing and it's

amoung transplant patients unlike a few years earlier where I was in a

different part of the hospital and on a floor just for Nephrology

appointments and where his secretary is (now you can't even get to his

secretary unless you are hospital staff with a swipe badge!). The staff

at the check-in part where I'm at now seem like their all just filling in

from different sections of the hospital and thus I get the ping-pong ball

effect of being passed to all different places. It was frustrating but as

of last week my results are supposed to be in the mail from last

month's testing and in the future I'm hoping that the place I was told to

go to for a copy of results will be hassle free.

>

> As for my question regarding home testing. I was just curious as to

what different people keep track of at home in between appointments

because it appears that your body goes through some major symptoms

between the 2nd and 3rd stage of CKD. I'm in the 2nd right now and

some days I wonder if symptoms I feel are kidney disease related,

paranoia or something else. It seems like the majority of people in this

group are in the later stages and deal with alot more stuff than we

milder ones, but that's not to say we milder ones don't feel stuff.

>

> As well, my doctor a few years back told me to get a medic-alert

bracelet and a home blood pressure machine, so I do occassionaly

check my blood pressure. It's never been as low as my doctor wants it

to be but it does creep up to the hypertensive stage. Others in this

group have commented about feeling worse after a cold or throat

infection. I've suffered for years with sinus infections and have

undergone surgery twice now to help correct the amount of infections I

get but to no avail. My urine contains large amounts of blood but I

don't actually see blood...my urine to me is always yellow or a little bit

darker yellow with bubbles. I just thought that if blood and protein

where things that equal kidney disease that I could home test with the

dipstick when I'm well and when I get an infection to see if there is any

change...but the few responses to my question don't mention dipstick

testing at home, only blood pressure.

>

> I'm the kinda person who prepares for the worst rather than hope for

the best...it's a character flaw I've yet to overcome, so I guess I'd rather

test at home for certain things to know before the doctor tells me

something has changed. Up until this past month's appointment I

haven't taken much of an interest in my kidney disease because I don't

think it had set in... but after this last appointment where I was told that

I'm still stable as far as the kidneys go but was in the pre-diabetes

stage I got a wake up call. I'm weeks away from turning 34 and I have

2 young girls...hypertension, cholesterol problems, diabetes...these

are all things I used to think affected the old age.

>

> Pierre said it perfectly when he said that most Nephrologists are

interested in dialysis/ transplant patients because that's where their

bread and butter are, that coupled with the fact that kidney disease is a

maintenance disease rather than a curable disease kinda makes those

of us who have been diagnosed in the early stages feeling like their

less important, when infact what I've learned the direct opposite from

being a part of this group. Knowledge is power and if I can have the

power to slow this disease down than I want to do everything possible

to gain it.

>

>

>

>

>

>