Re: [igan]

[Guest guest]

,

I hope you feel better soon. You keep calling those doctors until you make

them hear you.

[Guest guest]

Just thought I would give an update on the latest with the kidney infection.

Went to the urologist- always something new and exciting - to see what

damage was done by the strep infection. Something was amiss- but to be honest

by

the time the exam was done I was so traumatized I can't remember what he said.

I ran out of there so fast the nurse had to catch me at the elevator. Seems I

had forgotten my " urination diary and free measuring cup " I told her she

would have to find a bag for that because I was not caring that around. The

diary is sort of like a twenty four hour urine but you have to write down and

measure - just when you thought it couldn't get any worse. And you have to do

it

for two days.

On the agenda now is another CT scan and a cytoscope. Yes, that is the

little light and camera.

Anyway, I survived. It occurred to me today that being sick is not for the

poor or those lacking in spirit.

On a sunnier note, tomorrow I test for my first red belt (TaeKwonDo) My

instructor was kind enough to make arrangements after I missed the last one. I

am

extremely nervous because my sister is coming to watch for the first time.

Has anyone heard from karen?

[Guest guest]

,

I'm sorry! I envision you just stepping onto the elevator with a well

intentioned (oh please, save us from that) nurse flapping flippers behind you,

blithering about the urination diary and free measuring cup and I crack up. I

don't know if I would of decked her or haughtily informed her that the free

measuring cup came with the laundary soap, thank you.... Two days is just a bit

much. You are absolutely right, being sick is not for poor or lacking in

spirit.

Good luck with the CT scan and cytoscope. When do you have those scheduled for?

I'll be keeping a good thought for that red belt. I am extremely impressed....

Cy

Re:

Just thought I would give an update on the latest with the kidney infection.

Went to the urologist- always something new and exciting - to see what

damage was done by the strep infection. Something was amiss- but to be honest

by

the time the exam was done I was so traumatized I can't remember what he said.

I ran out of there so fast the nurse had to catch me at the elevator. Seems I

had forgotten my " urination diary and free measuring cup " I told her she

would have to find a bag for that because I was not caring that around. The

diary is sort of like a twenty four hour urine but you have to write down and

measure - just when you thought it couldn't get any worse. And you have to

do it

for two days.

On the agenda now is another CT scan and a cytoscope. Yes, that is the

little light and camera.

Anyway, I survived. It occurred to me today that being sick is not for the

poor or those lacking in spirit.

On a sunnier note, tomorrow I test for my first red belt (TaeKwonDo) My

instructor was kind enough to make arrangements after I missed the last one.

I am

extremely nervous because my sister is coming to watch for the first time.

Has anyone heard from karen?

[Guest guest]

> Dear ,

I am so glad that you are going to be able to test for your Red Belt!! I am

sorry your doctor's office went so badly. Anyway you can change doctors?

Good luck on your cystoscopy and CT Scan. Do you know what the reason for the

CT scan is -- are they thinking kidney stone?

Take care,

Rotghi

> From: catdial@...

> Date: 2003/06/21 Sat AM 12:00:23 EDT

> To: iga-nephropathy

> Subject: Re:

>

>

[Guest guest]

Cy,

I'll never be able to look at that nurse with a straight face again. You

have a pretty accurate image. You have to add the really big black - a can of

hairspray a day habit-hair.

The CT is next week and then that other thing is the week after. I am

hopeful that they will change their minds after the CT.

I got my first Red today. It was the hardest thing I have ever done. It

took three hours. I have never sweated so much in my life. I am so glad it is

over. Today was half of what the Black belt test is which has me really

concerned. Right now I feel like after you have a baby and you say " I am never

want

to do that again. " I am hoping that like labor the memory fades and then you

think it wasn't so bad. Cause right now I am thinking that a belt that is

half black isn't so bad. Atleast I am the same belt level as my oldest son now.

Cy, it does my heart good that you appreciate my humor. My hubby of 13 years

still doesn't get it. But I am ever hopeful.

[Guest guest]

Thanks for the good thoughts about the belt testing. I am glad it is over.

I don't think the doctor was so bad. It was just that he was a urologist.

The reason for the CT is to check to see if any damage was done by the strep

infection that I had in my kidneys. It took a couple of months before they

finally figured out what I had and then another month or so to cure it. I have

done a urine culture just about every week for the last month. Each time they

are sure it is the last time but it keeps coming back positive. The results

from the last one are due monday. I feel like this time it will be the last

because the nausua is finally subsiding. Before I knew it was'nt gone because

I was always nausaus and I had no appetite. I am the type that is always

hungry.

I had a check up at the neph's in Feb. and everything looked better than

ever. It looked like switching to cozaar had elimnated all protein spill and

there was only trace amount of blood in the urine. The next month is when

everything went down hill. I am hopeful that when the infection has cleared I

will

get the same good results again.

[Guest guest]

,

Thanks for the well wishes. I finished testing today. I was so relieved

when it was over I almost cried. But I decided that would be way uncool. My

kids

and nieces came in after it was done to congratulate me and that was probably

one of the best moments in my life.

Yes, I have done to cytoscope before when the blood was first discovered in

the urine. Not very pleasant but atleast it doesn't take to long. I do have a

question about it though. I have read a couple of articles on it and it

talks about a local pain reliever. I certainly didn't get one last time. One

article even said mild sedation was given. Now that I could go for. Wake me

when it is over. Was any type of pain relief given. I am concerned about it

even

more because of the constant bladder pain I have had for the last month or

so.

I was amazed at how many questions a doc can ask about urine. Some I just

didn't know how to answer because I had just never considered such things

before. I 'll just leave that to your imaginations.

[Guest guest]

Thanks Cy,

I wish everyone could find something that brings them joy like this does for

me. I was the one that was always picked last in PE because I was so not

athletically inclined. And goodness knows I had no rythmn and still don't. I

think everyone has some special talent and it is just a matter of finding it.

Relieving stress is a huge benefit with any exercise. I have a friend who

started clog dancing and she really loves it. I am not sure exactly how to

describe it except it involves really big shoes. When I hear people say they

don't like to exerise I tell them they just haven't found the right one for

them.

I even tried roller blading once but the first time I fell I broke my arm.

Ball room dancing wasn't bad but my husband would't let me lead.

[Guest guest]

Congrats! I am so happy that they let you do this NOW.

Somehow the old adage about you may not get what you work for, but you'll work

for what you get is never truer than with martial arts...

Cy

Re:

Cy,

I'll never be able to look at that nurse with a straight face again. You

have a pretty accurate image. You have to add the really big black - a can of

hairspray a day habit-hair.

The CT is next week and then that other thing is the week after. I am

hopeful that they will change their minds after the CT.

I got my first Red today. It was the hardest thing I have ever done. It

took three hours. I have never sweated so much in my life. I am so glad it is

over. Today was half of what the Black belt test is which has me really

concerned. Right now I feel like after you have a baby and you say " I am

never want

to do that again. " I am hoping that like labor the memory fades and then you

think it wasn't so bad. Cause right now I am thinking that a belt that is

half black isn't so bad. Atleast I am the same belt level as my oldest son

now.

Cy, it does my heart good that you appreciate my humor. My hubby of 13 years

still doesn't get it. But I am ever hopeful.

[Guest guest]

Hi ,

Congratulations on your Red belt. That is quite an accomplishment!

[Guest guest]

Thanks ,

[Guest guest]

Hello G.,

I am so sorry that you have this disease. You did not mention waht your

creatine is. that would give us an indication of the severity of your IGa.

There are many of us who have been through the depression of having to cope with

the realities of having this disease. What has helped us is to ask our Doc.s to

prescribe some sort of antidepressent. I personally have found that they have

helped me think straighter and be more objective about the things that I need to

be clear headed about. Certainly, IGa is something that one has to think

clearly about.

Many of your questions can be answered here by many of these wonderful and

supportive folks in this group.

Hello everyone

I am new to this site and just wanted to introduce myself. My name is

i am 26 and was diagnosed with iga about two and a half years ago, about

eight months ago i only just realised the severity of all this when my

consultant sat me down and explained it all. I presume i am in early stages

as i am only taking tablets for blood pressure and Cholesterol.

I have found it difficult to come to terms with and had a course of medical

counselling sessions, i was wondering if anyone else took it as bad as what

i did and what they do to keep their spirits up. Also does anyone else who

is in the early stages think it is a waiting game?

It would be great to hear back from people.

Take care all

---

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[Guest guest]

Hi ,

I'm glad that you found us, although sorry you have reason to be here. I

think there are as many different ways of coming to terms with bad medical

information as there are people. Some people have great faith. Some people

process things intellectually. Some people do a combination of both. Most

people find some way of getting on with their lives. My hunch is that while

you can look at it as a waiting game, you miss out on all the interesting

bits.

It's been just about a year since my son was diagnosed with MPGN.

Generally, MPGN is like IgAN, but worse - faster time to end stage, greater

proteinuria, a number of very nasty non-renal effects. As my son is my

only living relative (other than my 82 year old dad who's a few cards short

of a full deck), the bottom of my world fell out when he was diagnosed. I

dealt with it the way I usually deal with things - by heading to the

library. I think I spent the first six months post-diagnosis poring over

stuff at the med school library and trying to pull the greater picture

together. I also kept a copy of " The Median is Not the Message " by

Jay Gould (there are many copies around the net) on top of my desk. You can

still find me at the library these days --- just not quite as frequently!

Hopefully, you can find support with this group. I know it's helped me

enormously.

Cy

> Hello everyone

>

> I am new to this site and just wanted to introduce myself. My name is

> i am 26 and was diagnosed with iga about two and a half years ago, about

> eight months ago i only just realised the severity of all this when my

> consultant sat me down and explained it all. I presume i am in early

stages

> as i am only taking tablets for blood pressure and Cholesterol.

>

> I have found it difficult to come to terms with and had a course of

medical

> counselling sessions, i was wondering if anyone else took it as bad as

what

> i did and what they do to keep their spirits up. Also does anyone else

who

> is in the early stages think it is a waiting game?

>

> It would be great to hear back from people.

>

> Take care all

>

>

>

>

> ---

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>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

[Guest guest]

In a message dated 8/12/03 5:34:50 PM Eastern Daylight Time,

juliermom@... writes:

> " Nephritis is linked to overthinking and worrying - - - to much energy in

> the head caused by too little energy in kidney. "

>

>

I like that one.

[Guest guest]

, sorry to hear you've been diagnosed with IgAN, but glad you've found this

outlet. I, myself recently joined. An antidepressant wouldn't hurt. Some

docs. are a little wary about having you on them, but if it's necessary...

Really, don't think of it as a waiting game. Don't dwell on it. I've had to

really get myself to do this too. You can't let this run your life. What

happens, happens. As a slowly progressive disease, you may be fine for years

like many in the group. Keep us informed.

Hello everyone

I am new to this site and just wanted to introduce myself. My name is

i am 26 and was diagnosed with iga about two and a half years ago, about

eight months ago i only just realised the severity of all this when my

consultant sat me down and explained it all. I presume i am in early stages

as i am only taking tablets for blood pressure and Cholesterol.

I have found it difficult to come to terms with and had a course of medical

counselling sessions, i was wondering if anyone else took it as bad as what

i did and what they do to keep their spirits up. Also does anyone else who

is in the early stages think it is a waiting game?

It would be great to hear back from people.

Take care all

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.506 / Virus Database: 303 - Release Date: 01/08/2003

[Guest guest]

,

It is important to remember that anything that alters the course of your life

is considered a crisis. Getting diagnoses with IGa is or can be potentially

life altering. It is quite understandable to be upset.

I remember the first few weeks and months I felt like I was waiting to get

sick. I was afraid to make plans because I didn't know how I would feel on any

given day. As time has passed, it has gradually become not all consuming. A

pivotal day was when I imagined what I would feel emotionally if my kidneys

failed. My first thought was that I hope I would not have wasted a day

worrying. After reading post from those who have reached ESRD, I realized that

life

would go even if my kidneys failed.

I know I wanted more definitive answers from the nephs about statistics but

always felt like they were being evasive. I don't think there is a reliable

statistic right now. I was originally told only 4% of people with IGa reach

ESRD. You may still come across this number is some older research reports.

Keep reading the post and website- all the medical jargon becomes second

nature pretty quickly.

I hope you don't feel shy about posting here. We have all been through it and

are happy to be able to give back some of the encouragement that we received

when we were new here. Please keep in touch.

[Guest guest]

Hi .

It can be hard when you find out the first time you have a chronic kidney

disease. For many, as it was for me, it's really the first time we are made

to face something like this. But after a while, in most cases, unless you're

already close to needing dialysis by the time they find out, or you have a

rare more severe case, nothing much happens, and you learn to deal with, if

not ignore it.

To be honest, I never thought of it as a waiting game. I tend to live in the

present, and anything that might or might not happen far off in the future

never bothered me. The first sixteen years, I virtually ignored it

completely, and carried on a perfectly normal life, raised a family, etc..

It only became more intrusive in my life when I started having severe high

blood pressure. So I went through all of the 1980's not worrying about it.

Time is a great healer, and I'm pretty sure you will develop an acceptance

of it, and go on with your life (no reason not too). If you're like most of

us, you go through all the usual stages of acceptance, to varying degrees:

1 - Denial

2- Anger

3- Bargaining

4- Depression

5- Acceptance

I've always kept my spirits up by doing the things that interest me, or by

helping people (an old cliche, but true). We all have to go sometime, and

none of us knows when that sometime will come, so we may as well just live

out our lives as best we can, and do the things we want to do and can do.

One disease here or there shouldn't make that much difference in the grand

scheme of things.

Best of luck to you.

Pierre

> Hello everyone

>

> I am new to this site and just wanted to introduce myself. My name is

> i am 26 and was diagnosed with iga about two and a half years ago, about

> eight months ago i only just realised the severity of all this when my

> consultant sat me down and explained it all. I presume i am in early

stages

> as i am only taking tablets for blood pressure and Cholesterol.

>

> I have found it difficult to come to terms with and had a course of

medical

> counselling sessions, i was wondering if anyone else took it as bad as

what

> i did and what they do to keep their spirits up. Also does anyone else

who

> is in the early stages think it is a waiting game?

>

> It would be great to hear back from people.

>

> Take care all

>

>

>

>

[Guest guest]

Pierre, I recently have come down with prostititus, and Ican't seem to get

rid of it. Its a constant felling of having to go to the bathroom its aweful.

They say people get it because of stress, I also sit all day at work and I

have been getting pelvic pressure. The dr. says it has nothing to do with my

iga but i was wondering if anybody has been through this or has any thoughts.

Torrey

[Guest guest]

TORREY,,,,,,,THAT MAY BE WHAT I HAVE,,,,,,I HAVE THE SAME FEELING ALL THE

TIME,,,,,I CANT EVEN GET A GOOD NIGHT REST BECAUSE I HAVE TO GET UP AND GO AT

LEAST ONCE A HOUR,,,,,,,NEVER KNEW IT HAD A NAME FOR IT,,,LOL,,,CRYSTAL

[Guest guest]

lol@erick!!!!!!!!!,,,,,,,crystal

[Guest guest]

Crystal,

I don't think you have prosatitis. If you are a woman you could not

possibly have prostatitis. My wife also jokes with me and tells me that she

has never had prostatitis either.

k

Re:

> TORREY,,,,,,,THAT MAY BE WHAT I HAVE,,,,,,I HAVE THE SAME FEELING ALL THE

> TIME,,,,,I CANT EVEN GET A GOOD NIGHT REST BECAUSE I HAVE TO GET UP AND GO

AT

> LEAST ONCE A HOUR,,,,,,,NEVER KNEW IT HAD A NAME FOR IT,,,LOL,,,CRYSTAL

>

>

>

[Guest guest]

No special connection with having IgAN that I know of. Don't know about

stress. I thought that was caused by an infection.

Pierre

Re:

> Pierre, I recently have come down with prostititus, and Ican't seem to

get

> rid of it. Its a constant felling of having to go to the bathroom its

aweful.

> They say people get it because of stress, I also sit all day at work and

I

> have been getting pelvic pressure. The dr. says it has nothing to do with

my

> iga but i was wondering if anybody has been through this or has any

thoughts.

> Torrey

>

[Guest guest]

Nobody has diagnosed what exactly my problem is, but I've had really

serious bouts of the same symptoms for the last several years. I've had

various physicians and quacks prescribe antibiotics, antacids, and

painkillers but nothing makes much of a difference. This started a

couple of years before my formal IGAN diagnosis.

When it gets really bad all I can do is take some tylenol and hope that

maybe I'll be able to sleep a few minutes once in a while between

bathroom breaks. Over the last couple of years I don't think the problem

has actually gone away - only fluctuated between mild burning and

severe. I haven't been able to sleep more than 4 hours between bathroom

breaks in at least three years - usually I only make 2-3 hours between

pit stops.

I'm not positive that is has helped, but a few times when all else

failed during a severe bout I've taken gas pills (not plain antacids

which I've tried many times) and felt noticably better. Maybe

coincidence - I don't know.

Bill Kuhn

Middle-of-Nowhere, KS

Re:

TORREY,,,,,,,THAT MAY BE WHAT I HAVE,,,,,,I HAVE THE SAME FEELING ALL

THE

TIME,,,,,I CANT EVEN GET A GOOD NIGHT REST BECAUSE I HAVE TO GET UP AND

GO AT

LEAST ONCE A HOUR,,,,,,,NEVER KNEW IT HAD A NAME FOR IT,,,LOL,,,CRYSTAL

[Guest guest]

Hi ,

Great to get your update. Your serum creatinine is really pretty good, but I

can understand the concern that you are still spilling 7 grams in 24 hours.

My Neph has always just been concerned about the total protein in 24 hours,

and 7 is high, but I am glad it is trending down with the cyclosporine.

, I don't remember if you are still on prednisone also, or just the

cyclosporine.

Glad to hear the good trend, and I hope your treatment continues to move that

protein down!

I am also pleased that you are back to Rugby! I am a firm believer in not

letting IgAN dictate your life, and to living life to the fullest extent, and

that sounds like exactly what you are doing so cheers to you :-)

[Guest guest]

Ditto .

Nothing I can add to what Cy and already said. Enjoy the rugby - not a

game I like particularly, but a friend of mine used to be an avid rugby

player.

Pierre

Re:

> Hi ,

>

> Great to get your update. Your serum creatinine is really pretty good,

but I

> can understand the concern that you are still spilling 7 grams in 24

hours.

> My Neph has always just been concerned about the total protein in 24

hours,

> and 7 is high, but I am glad it is trending down with the cyclosporine.

>

> , I don't remember if you are still on prednisone also, or just the

> cyclosporine.

>

> Glad to hear the good trend, and I hope your treatment continues to move

that

> protein down!

>

> I am also pleased that you are back to Rugby! I am a firm believer in not

> letting IgAN dictate your life, and to living life to the fullest extent,

and

> that sounds like exactly what you are doing so cheers to you :-)

>

>

>

>