Cy

[Guest guest]

Cy,

You posted a response to me off of a post I sent to Jack. Here is my reply...

Initially when I found out I had kidney disease all I could think about was what

I my dad experienced with his battle and feared the same outcome for myself. I

was relieved to hear at the time though that kidney disease is often not a

heredity disease and my numbers were still in the mild stage.

I had to use my stern bones with my first nephrologist for a name of my disease.

She said that based on my labs and looking at my urine under a microscope that

she thought I had IgAN. At that time my urea was 3.0, creatinine 57, 2+

protein, 4+ blood, my urinalysis showed many RBC, casts and 2 definite red blood

cell casts (that's all the info I have from the beginning).

As I've stated before, my new nephrologist hasn't relayed any specific details

to me on my kidney numbers. I've only been given my bp and triglyceride numbers

because those are the two things that have gone up in which medication was

started. In the past two years I just give blood, go to my appointments and

didn't give a second thought to my actual kidney disease because everything was

stable. I had an abdominal ultrasound to rule out ascites because I keep

swelling (face, hands, feet and abdomen) and my doctor said that it was unusual

to get swelling this early on. The u/s came back normal except for something

showing up with my liver.

I got a wake up call at my last appointmnet that prompted me to learn about

IgAN. As you said, I don't know how my doctor(s) have concluded that I have

IgAN without a biopsy. My current nephrologist hasn't denied me having IgAN,

but he hasn't officially confirmed it either. About a year ago at an

appointment as the silence was getting creepy in the room while he looked over

my chart, I asked if I still had kidney disease and he said yes, but never

clarified which kind so I just assumed we were still on the IgAN page.

Last week I went to my regular doctors office and requested a copy of my labs

from June and there was nothing in my chart except a letter from my nephrologist

saying I had this focal glomerulonephritis and some sort of edema, blah blah

blah and he'd follow up with me in 6-months. Now seeing that my regular doctor

is no longer working in the office, I had a choice to make...see another doctor

who I don't know, who doesn't know me or get a hold of my recent labs and figure

out where I'm at, I chose the latter which has been nothing but frustration

because it seems that most kidney patients aren't diagnosed till their beyond

stage 3.

I wanted to talk with my nephrologist because I wanted my specific questions

about my diagnosis answered 'from the horses mouth' and not some student or

another doctor who doesn't specialize in nephrology, despite the fact that here

in Canada you seem to go to a family doctor for everything under the sun until

you're bumped up to high-risk catergory. I don't take the information I get via

the internet or group postings as a diagnosis or a predictor of my future...I

simply want to compare my situation with others in the same boat. I've kinda

felt these past few days that I don't fit into the IgAN summary of things.

Well, until my next appointment I guess I linger in the unknown because despite

kidney disease being different for everyone, I certainly do not feel as if or my

numbers fit with IgAN. I have something but as it seems right now only one man

holds the answer.

How old is your son and how long has he been living with kidney disease? Is his

situation a fast progressing one like it was in my dad's case?

[Guest guest]

,

I too was in kind of limbo for a good 16 years until I finally had a biopsy.

All I knew until then was that I had " some kind of mild glomerulonephritis " .

Pierre

Cy

> Cy,

>

> [snipped] I've kinda felt these past few days that I don't fit into the

> IgAN summary of things.

>

> [snipped]>

>

>

[Guest guest]

Thanks Cy, It sure does. My parents are both in denial over everything. Its not

easy on any of us. I tell them very little about , because they get so

upset. I just glad I have my sister to talk to.

What do you mean by measuring protein/creatinine ratio? Is that through blood

test or urine?

I know thats how they get the GFR, but I am not sure what his is. I have all his

lab reports now.

The neph now has doing instead of 24hr, pees in the toilet at 10:00pm

and then bedrest, then he gets up at midnight and pees again in the toilet. When

he gets up in the morning he then pees in the bottle, then off to the lab.

Cy Webb cyashleywebb@...> wrote:

Hi ,

I'm deeply sorry to hear your about your brother. Been very close to a several

folks struggles with various types of cancer and it just plain sucks. For

everyone.

You might want to double check with your neph to see if he is open to doing

protein/creatinine ratios instead of the 24 hour big pee. It's a lot easier.

I know you know (and it may be impossible), but try to take care of yourself.

Even really little things (for me it's taking the time to read the paper over a

good coffee) can provide a bit of a psychic boost. Just being able to claim a

wee bit of time for yourself can be restorative.

Cy

susan capo ssncp@...> wrote:

Hi Cathy, I am so sorry, you are going through bad times. It will get better

with time. I am too going through alot of family issues, mostly everyone around

me has a major health problems. My older brother has cancer and told us the

other day he does not think he will make it. I think he is so depressed from all

the pain he is in. And , I don't even ask him anymore if he feels ok, I

let him tell me, otherwise we keep our scheduled appointments every few weeks.

He hates doing those 24 hr urines, lately he refuses to do them, so now his neph

has him doing somthing different which work out better. I hope and pray all goes

better with you. call me some time and we can go out for a drink. We could both

use it. Thanks,

Cathy Waelty wrote:Hi

I wish I could get Jennell to go to therapy but here we go again, she

absolutely refuses. I'm telling you, it's a good thing for her that I am

not an abusive mother because believe me she would be black and blue. I

agree with you, I don't know what mood she is in until I speak to her, which

by the way lately I have been avoiding her as much as possible because of

it. She has been spending a lot of time with her boyfriend and this has

kept her very busy. Mentally with all of everything else that is going on

around here I am not very mentally stable myself, lots of family and

personal problems that again have been going on for a long time now and I

just do not see any light at the end of the tunnel, I have been in a bad

depression for the past couple of months and that's why I haven't posted

much. I am just now starting to get over the sadness of it all and

beginning to get angry and trying to take control of my life again.

God Bless \Cathy..Jennell's Mom.

_____

From: iga-nephropathy

[mailto:iga-nephropathy ] On Behalf Of susan capo

Sent: Tuesday, August 02, 2005 5:53 PM

To: iga-nephropathy

Subject: RE: Cathy

Hi Cathy, As far as I can tell you, I never know what kind of mood he is in

until I open my mouth to talk to him. If I try to talk to him about his

disease he gets very angry with me and he tells me he just wants to forget

about it. He just started microphentalate (cellcept) today and he is not

happy about taking another drug, especially knowing the side effects of it.

He got a little upset with his neph last week, when he mentioned the side

effects and he bursted out that he just wanted to enjoy his summer and wait

till the fall to start it.

Then one the way out his neph pulled me aside and asked if he might be

depressed. I told him we just finished a year of counseling and I thought

his attitude was better, but who knows, I am told its also his age and being

a teenager. So Cathy, I most often just let him blow it off and ignore him

to a certain point. I find the best time to talk to him, is at bedtime or in

the car and I find he will then do most of the talking. Well I hope some of

this helps to know your not alone.

take care.

Cathy Waelty wrote:

Thank you , How do you deal with when he refuses the call to

the doctor? Are you trying to reason with him or do you get angry, or do you

just respect his wishes and pray heavily like I do?

Cathy...Jennell's Mom

_____

From: iga-nephropathy

[mailto:iga-nephropathy ] On Behalf Of susan capo

Sent: Thursday, July 28, 2005 6:08 PM

To: iga-nephropathy

Subject: RE: Cathy

Hi Cathy, I am so sorry to hear about your friend. I know how tough it is

for you and Jennell. I am going thru the same attitude with . Just

the other day I thought I should bring him to the doctors, because he was

complaining of a fast heart beat, cramps in his legs and he refused to let

me call. Of course it seems harder for us to always deal with them.

Everyone keeps telling me it will get easier as they get older....

Cathy Waelty wrote:

I just wanted to jump in and say congratulations and a great big thank you

also, to Pierre, Walt, , Cy, , Barton, Rita and Amy G for all you

have done for us that have had Igan invade our lives. Like so many others

here, you all have been such a blessing for my sanity with the learning and

everyday coping with the dreaded Igan. I have learned, and I am still

learning so much from all of you that has tremendously helped me through

many days of confusion with my child's unexpected diagnosis.

Words just can not express my personal gratitude.

May God Bless you all for all your past hard work and continued support.

Sorry I have been quiet lately, lots going on here. I do read all the post

daily, and for all of you that have had not so good news and all the

newcomers here my prayers are with you, for all of you that have received

good news, congratulations and keep up the good work.

Jennell is going through what I am guessing is denial on her Igan and

although things have been happening with it, headaches, joint pain and now a

new breakout with her HSP and her dreadful nasty attitude she refuses to let

me call the doctor or go see him until her next appointment on August 5th.

I was also in a serious car accident where I was driving my pregnant friend

home from a doctors appointment when we got re-ended on the highway, sadly

she lost the baby from it and although it was not my fault I am just so sick

over it and trying to deal with that. Please know that although I have been

quiet my prayers are still with all of you.

God Bless everyone here

Cathy......Jennell's Mom

[Guest guest]

Hi ,

I'm sorry to hear about your parents. It can be very hard stuff to talk

about. I confess, I never had that much patience to talk to my

mother-in-law when my husband was dying. There are no easy answers there.

Sometimes avoiding those conversations is necessary so you can take better

care of yourself - and the sick person.

Doing protein/creatinine ratios is a great trick. Done correctly, this is

calculated based upon a single specimen first thing in the AM after voiding

before bedtime. Urine protein is all over the place - for example it is

very much affected by hydration. That's why they need to do a 24 test (or

abbreviated version of the same). The logic behind doing a

protein/creatinine ratio is that you are comparing something very variable

(urine protein) against something that is very constant (creatinine). These

are reasonably accurate. This could be what he is doing with that single

sample.

Cy

RE: Cathy

>

>

>

> Hi Cathy, I am so sorry to hear about your friend. I know how tough it is

> for you and Jennell. I am going thru the same attitude with . Just

> the other day I thought I should bring him to the doctors, because he was

> complaining of a fast heart beat, cramps in his legs and he refused to let

> me call. Of course it seems harder for us to always deal with them.

> Everyone keeps telling me it will get easier as they get older....

> Cathy Waelty wrote:

>

>

>

>

> I just wanted to jump in and say congratulations and a great big thank you

> also, to Pierre, Walt, , Cy, , Barton, Rita and Amy G for all you

> have done for us that have had Igan invade our lives. Like so many others

> here, you all have been such a blessing for my sanity with the learning

> and

> everyday coping with the dreaded Igan. I have learned, and I am still

> learning so much from all of you that has tremendously helped me through

> many days of confusion with my child's unexpected diagnosis.

>

> Words just can not express my personal gratitude.

>

> May God Bless you all for all your past hard work and continued support.

>

>

>

> Sorry I have been quiet lately, lots going on here. I do read all the post

> daily, and for all of you that have had not so good news and all the

> newcomers here my prayers are with you, for all of you that have received

> good news, congratulations and keep up the good work.

>

>

>

> Jennell is going through what I am guessing is denial on her Igan and

> although things have been happening with it, headaches, joint pain and now

> a

> new breakout with her HSP and her dreadful nasty attitude she refuses to

> let

> me call the doctor or go see him until her next appointment on August 5th.

>

>

>

>

> I was also in a serious car accident where I was driving my pregnant

> friend

> home from a doctors appointment when we got re-ended on the highway, sadly

> she lost the baby from it and although it was not my fault I am just so

> sick

> over it and trying to deal with that. Please know that although I have

> been

> quiet my prayers are still with all of you.

>

>

>

> God Bless everyone here

>

> Cathy......Jennell's Mom

>

>

>

>

>

>

[Guest guest]

Thankyou Cy, Do you think this way is better than the 24hr urines?

Cy Webb cyashleywebb@...> wrote:Hi ,

I'm sorry to hear about your parents. It can be very hard stuff to talk

about. I confess, I never had that much patience to talk to my

mother-in-law when my husband was dying. There are no easy answers there.

Sometimes avoiding those conversations is necessary so you can take better

care of yourself - and the sick person.

Doing protein/creatinine ratios is a great trick. Done correctly, this is

calculated based upon a single specimen first thing in the AM after voiding

before bedtime. Urine protein is all over the place - for example it is

very much affected by hydration. That's why they need to do a 24 test (or

abbreviated version of the same). The logic behind doing a

protein/creatinine ratio is that you are comparing something very variable

(urine protein) against something that is very constant (creatinine). These

are reasonably accurate. This could be what he is doing with that single

sample.

Cy

RE: Cathy

>

>

>

> Hi Cathy, I am so sorry to hear about your friend. I know how tough it is

> for you and Jennell. I am going thru the same attitude with . Just

> the other day I thought I should bring him to the doctors, because he was

> complaining of a fast heart beat, cramps in his legs and he refused to let

> me call. Of course it seems harder for us to always deal with them.

> Everyone keeps telling me it will get easier as they get older....

> Cathy Waelty wrote:

>

>

>

>

> I just wanted to jump in and say congratulations and a great big thank you

> also, to Pierre, Walt, , Cy, , Barton, Rita and Amy G for all you

> have done for us that have had Igan invade our lives. Like so many others

> here, you all have been such a blessing for my sanity with the learning

> and

> everyday coping with the dreaded Igan. I have learned, and I am still

> learning so much from all of you that has tremendously helped me through

> many days of confusion with my child's unexpected diagnosis.

>

> Words just can not express my personal gratitude.

>

> May God Bless you all for all your past hard work and continued support.

>

>

>

> Sorry I have been quiet lately, lots going on here. I do read all the post

> daily, and for all of you that have had not so good news and all the

> newcomers here my prayers are with you, for all of you that have received

> good news, congratulations and keep up the good work.

>

>

>

> Jennell is going through what I am guessing is denial on her Igan and

> although things have been happening with it, headaches, joint pain and now

> a

> new breakout with her HSP and her dreadful nasty attitude she refuses to

> let

> me call the doctor or go see him until her next appointment on August 5th.

>

>

>

>

> I was also in a serious car accident where I was driving my pregnant

> friend

> home from a doctors appointment when we got re-ended on the highway, sadly

> she lost the baby from it and although it was not my fault I am just so

> sick

> over it and trying to deal with that. Please know that although I have

> been

> quiet my prayers are still with all of you.

>

>

>

> God Bless everyone here

>

> Cathy......Jennell's Mom

>

>

>

>

>

>

[Guest guest]

Hi ,

It certainly it more convenient! It could be that this is what your doc is

doing. I'm unfamiliar with anyone basing a 24 hour urine on a single AM sample.

Cy

> The neph now has doing instead of 24hr, pees in the toilet at

> 10:00pm and then bedrest, then he gets up at midnight and pees again in

> the toilet. When he gets up in the morning he then pees in the bottle,

> then off to the lab.

>

> Cy Webb wrote:

>

[Guest guest]

Hi Cy, I will ask the neph next appt how he is basing this instead of the 24hr

one. I will let you know soon. Thanks,

Cy Webb cyashleywebb@...> wrote:Hi ,

It certainly it more convenient! It could be that this is what your doc is

doing. I'm unfamiliar with anyone basing a 24 hour urine on a single AM sample.

Cy

> The neph now has doing instead of 24hr, pees in the toilet at

> 10:00pm and then bedrest, then he gets up at midnight and pees again in

> the toilet. When he gets up in the morning he then pees in the bottle,

> then off to the lab.

>

> Cy Webb wrote:

>

[Guest guest]

Hi Cy,

Congrats on quitting smoking - you and others give me hope that I will be in

your shoes one day - smoke free - Yeah!

Cy - on another note, Toms River, NJ was beautiful. I don't know if you

remember the beach/boardwalk at Seaside Heights, but that has improved

tremendously. Loved every single second! Hugs, Rita

[Guest guest]

There is no place like Toms River. It even smells different - softer

somehow - than the coast here. I remember biking around there as a kid.

Cy

Re: Cy

> Hi Cy,

>

> Congrats on quitting smoking - you and others give me hope that I will be

> in

> your shoes one day - smoke free - Yeah!

>

> Cy - on another note, Toms River, NJ was beautiful. I don't know if you

> remember the beach/boardwalk at Seaside Heights, but that has improved

> tremendously. Loved every single second! Hugs, Rita

>

>

>