Re: ADVICE PLEASE

[Guest guest]

.

A convenient framework that social workers use is the classic 5 stages of

acceptance. You probably know them already. I've posted about this before,

and I can post them again if you like (in fact, I really should put that up

on the website for future reference). Let me know if you don't already have

them. It may seem overly simplistic, but it is a very effective way of

mapping out where you are. Everybody, and I mean everybody, goes through the

same things, to one degree or another. Just about all of us have to face a

time when we're not perfectly healthy anymore, no matter what the disease

is. It's scary, but we quickly adapt. Some of us need a little more help

than others.

Don't think that you can do it alone. Many family members, in my experience,

end up in total denial anyway, but you have to give them a chance. So talk

about it. Don't just keep it bottled up inside. It's not really something

you want to hide, but it's not like you've been given 6 months to live. It

will impact on your life, but not as dramatically as you think now.

Do read the info I've put up so far at www.igan.ca . Knowing is empowering,

in my opinion.

Even nurses get sick. Where I go for dialysis, there is a quite a number of

the nurses who are diabetic, and they know that they themselves might be

sitting in those chairs some day. Nurses need help as much as anyone else.

In the live support groups I've attended at my nephrology centre, it's

surprising how often there are nurses among the other patients. They need

the same support that we all do, and the wise ones go out and get it.

Luckily, you've already taken a first step by coming here to this group.

One thing you have to realize is that the blood in the urine is not really

all that serious. It's probably one of the least serious things about IgAN.

While it may look dramatic when you have it, it actually takes just a tiny

amount of blood to colour your urine that way, and people who never get

visible blood in the urine with their IgAN actually don't do as well in the

long run. So, in that sense, you may look on the blood as a blessing. I'm on

dialysis now, have been for over a year, and I never had visible blood in my

urine once during the entire 26 years I know I've had IgAN.

Pierre

ADVICE PLEASE

> Thank you for your support. wrote me too. This is an

amazing group thing you have here. Anyway, This is my second nephrologist.

Right now I am feeling sorry for myself and can't tell my family this

because they count on my strength . I have progressively gotten worse over

the years and boy is it hard to keep my strength up. Sometimes I think that

Noone is hearing me that I feel so bad. I am a nurse and I know that I'm

getting closer to failure and it is a very frightening thing. Although my

BUN and Creat. are okay at this point, the pain has worsened, and the

episodes of bleeding has gotten more frequent and longer lasting. What I

don't know is HOW LONG TIL THIS GETS THE BEST OF ME.? Will I know when I

need to call the Dr. I don't want to jump the gun, and I feel bad all the

time, so how does one know? Sorry for venting so much, I'm sure you get

alot of this, so I'll let you be for now. Thanks for the ears.

>

[Guest guest]

, Hang in there lady. It seems overwhelming to me quite often, my

diagnosis came in Sept '03 thru biopsy...a biopsy that reads like a horror

novel. I'm 34, mom of 2 young kids, business owner, wife, homeschooler, and

then there is that housewife stuff like cleaning, and shopping, and laundry, and

general household upkeep we all have to do. My routine yearly physical in Nov

'02 showed me overweight but in good health. All my labs at that time were

normal, my b/p was normal, everything looked good. Then in March my family and

I had a horrid case of food poisoning, I believe this was the catalyst for me.

I never felt like I fully " recovered " from it though my family was fine I still

felt off. Mentally I found I was deteriorating and started seeing a therapist

to help me cope with my loss of mental bearings. Fatigue had set in big time

too, I would fall asleep sitting up at the drop of a hat. In July a sinus

infection sent me into my GP only to find my b/p was 173/113 at the time.

Routine lab was done and medications were started to bring my b/p down. The

labs came back and my creatinine levels were high...the GP noting my age sent me

back for 3 more tests just to be sure that the lab hadn't goofed up the result.

I started reacting very badly to the first b/p meds and went into a psychotic

state...it was found later to be the diuretics that were causing my electrolytes

to be out of whack. It was early Sept when I first got into the nepthrologist.

More labs confirmed there was something very wrong going on...biopsy followed.

My labs show that my kidneys were working at about 25-40% depending on what

value you looked at, my biopsy however showed that I should be on dialysis right

NOW. Major crecentric scarring, lots of damage, they gave me a WHO Class V

rating, my GP commented that my neph called her and said he couldn't believe the

results since my labs showed much better function. My neph brought my case to

his co-workers and between the 5 of them they came up with a path of treatment

for me that started aggressive. 3-1000mg IV prednisone treatments followed by

high prednisone doses for the next 4-6 months...I'm entering month 4 right now

on 40mg daily. My protein levels have dropped so things seem to be working with

the prednisone. They started me on Lisniopril for my b/p which seems to be

working o.k. but not as well as it should be so Cardizem LA was added a few

weeks ago. The prednisone has caused some minor side effects like major moon

face, tremors, difficulty with linear thought (I have a very hard time

multi-tasking any longer), I get easily frustrated when trying to complete new

things (like new designs for my business), muscle cramping in my knees and back,

and a few others I'm sure I'm forgetting. The fatigue is still there and I'm

slowly learning to slow down and live with it. I work out of my home as a

seamstress custom designing doll clothes. November and December are very busy

for me due to Christmas orders and fatigue for the first time caused me to send

some people away, I just had to face up that I couldn't function at the level I

was last year. It was very hard to deal with because I didn't want this change

to come.

At the end of November I went in for my yearly checkup with my GP who found

a lump on my breast, a mammogram followed. Thankfully my mammogram showed

normal! I'm also having cyst like problems with my tonsils, an ongoing problem

that has only seemed to get worse on the prednisone. So a visit to an ENT was

ordered, CTscan of my sinuses showed clear and we set up to remove my tonsils at

the end of Jan. In all that I was also sent into the allergist to check for

food allergies since I'm finding that I have more food sensitivities since all

this started. So I know what you mean about not wanting to see yet ANOTHER

doctor but realize that it will slow up sooner or later.

Working for me has become difficult. I'm o.k. if I stick with my designs

that I have sewn over and over again, but working on new designs for people

takes me about four times as long as it should. I have to do a bit, let it sit

so my brain can wrap around it, then go back to it and work on it some more. It

becomes very frustrating. Also the position I sit when I work causes my lower

back to cramp much more frequently than it did before so I can only sew in short

bursts now. The prednisone has caused my fingers to bleed easily too so

handsewing the detail work on my clothes has to be done in short spurts and I'm

forever walking around with bandaids on my fingertips. I press on though like

so many others here, just at a much slower pace than I have ever been used to.

Well gosh that's long enough don't you think? I'm in a talkative mood this

morning. We all face struggles with this disease, coming to your own terms

with it takes time. It sounds like you are finally letting yourself feel. Let

the feelings come, talk with your family about them, talk with us about them, no

one here will ever think you are " complaining " too much. You have very valid

fears keeping it in only makes them worse.

Amy

[Guest guest]

Happy New Year !

Funny - when I first had my gross haematuria it was right smack after a nasty

virus but I was really really fit - exercising every day and playing soccer ever

week - doctor mention that haematuria isn't uncommon in athletes (hey it made me

feel good lol) and it's not known what causes it but vigorous exercise can - so

I guess for us IgANs it could make it worse when we do? Not that 18 holes is

particularly vigorous )

Dave

Re: ADVICE PLEASE

..

You can post here all you want. We all are in this together.

I have had Igan for 28 years and have have blood in urine on and off

the entire time.Mine seems to coincide with activities.The day after

a round of golf it is heavy.The next day not as bad.It is just a part

of Igan.But don't let it frighten you.I am sorry to say that I live

on pain meds but without it I don't want to get out of bed.After a

while it's like taking aspirin.It does not bother you.

Just keep on living life to it's fullest and don't let it get you

down.Like I said,I am still dialysis free after all these years.

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[Guest guest]

Happy New Year !

Funny - when I first had my gross haematuria it was right smack after a nasty

virus but I was really really fit - exercising every day and playing soccer ever

week - doctor mention that haematuria isn't uncommon in athletes (hey it made me

feel good lol) and it's not known what causes it but vigorous exercise can - so

I guess for us IgANs it could make it worse when we do? Not that 18 holes is

particularly vigorous )

Dave

Re: ADVICE PLEASE

..

You can post here all you want. We all are in this together.

I have had Igan for 28 years and have have blood in urine on and off

the entire time.Mine seems to coincide with activities.The day after

a round of golf it is heavy.The next day not as bad.It is just a part

of Igan.But don't let it frighten you.I am sorry to say that I live

on pain meds but without it I don't want to get out of bed.After a

while it's like taking aspirin.It does not bother you.

Just keep on living life to it's fullest and don't let it get you

down.Like I said,I am still dialysis free after all these years.

----------

Outgoing mail is certified Virus Free.

Checked by AVG Anti-Virus (http://www.grisoft.com).

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[Guest guest]

Happy New Year !

Funny - when I first had my gross haematuria it was right smack after a nasty

virus but I was really really fit - exercising every day and playing soccer ever

week - doctor mention that haematuria isn't uncommon in athletes (hey it made me

feel good lol) and it's not known what causes it but vigorous exercise can - so

I guess for us IgANs it could make it worse when we do? Not that 18 holes is

particularly vigorous )

Dave

Re: ADVICE PLEASE

..

You can post here all you want. We all are in this together.

I have had Igan for 28 years and have have blood in urine on and off

the entire time.Mine seems to coincide with activities.The day after

a round of golf it is heavy.The next day not as bad.It is just a part

of Igan.But don't let it frighten you.I am sorry to say that I live

on pain meds but without it I don't want to get out of bed.After a

while it's like taking aspirin.It does not bother you.

Just keep on living life to it's fullest and don't let it get you

down.Like I said,I am still dialysis free after all these years.

----------

Outgoing mail is certified Virus Free.

Checked by AVG Anti-Virus (http://www.grisoft.com).

Version: 7.0.209 / Virus Database: 261.5.5 - Release Date: 30/12/2003

[Guest guest]

Hi Amy, what a really crappy year '03 was for you ( I so hope '04 is much

better for you ;o)

Dave

Re: ADVICE PLEASE

, Hang in there lady. It seems overwhelming to me quite often, my

diagnosis came in Sept '03 thru biopsy...a biopsy that reads like a horror

novel. I'm 34, mom of 2 young kids, business owner, wife, homeschooler, and

then there is that housewife stuff like cleaning, and shopping, and laundry, and

general household upkeep we all have to do. My routine yearly physical in Nov

'02 showed me overweight but in good health. All my labs at that time were

normal, my b/p was normal, everything looked good. Then in March my family and

I had a horrid case of food poisoning, I believe this was the catalyst for me.

I never felt like I fully " recovered " from it though my family was fine I still

felt off. Mentally I found I was deteriorating and started seeing a therapist

to help me cope with my loss of mental bearings. Fatigue had set in big time

too, I would fall asleep sitting up at the drop of a hat. In July a sinus

infection sent me into my GP only to find my b/p was 173/113 at the time.

Routine lab was done and medications were started to bring my b/p down. The

labs came back and my creatinine levels were high...the GP noting my age sent me

back for 3 more tests just to be sure that the lab hadn't goofed up the result.

I started reacting very badly to the first b/p meds and went into a psychotic

state...it was found later to be the diuretics that were causing my electrolytes

to be out of whack. It was early Sept when I first got into the nepthrologist.

More labs confirmed there was something very wrong going on...biopsy followed.

My labs show that my kidneys were working at about 25-40% depending on what

value you looked at, my biopsy however showed that I should be on dialysis right

NOW. Major crecentric scarring, lots of damage, they gave me a WHO Class V

rating, my GP commented that my neph called her and said he couldn't believe the

results since my labs showed much better function. My neph brought my case to

his co-workers and between the 5 of them they came up with a path of treatment

for me that started aggressive. 3-1000mg IV prednisone treatments followed by

high prednisone doses for the next 4-6 months...I'm entering month 4 right now

on 40mg daily. My protein levels have dropped so things seem to be working with

the prednisone. They started me on Lisniopril for my b/p which seems to be

working o.k. but not as well as it should be so Cardizem LA was added a few

weeks ago. The prednisone has caused some minor side effects like major moon

face, tremors, difficulty with linear thought (I have a very hard time

multi-tasking any longer), I get easily frustrated when trying to complete new

things (like new designs for my business), muscle cramping in my knees and back,

and a few others I'm sure I'm forgetting. The fatigue is still there and I'm

slowly learning to slow down and live with it. I work out of my home as a

seamstress custom designing doll clothes. November and December are very busy

for me due to Christmas orders and fatigue for the first time caused me to send

some people away, I just had to face up that I couldn't function at the level I

was last year. It was very hard to deal with because I didn't want this change

to come.

At the end of November I went in for my yearly checkup with my GP who

found a lump on my breast, a mammogram followed. Thankfully my mammogram showed

normal! I'm also having cyst like problems with my tonsils, an ongoing problem

that has only seemed to get worse on the prednisone. So a visit to an ENT was

ordered, CTscan of my sinuses showed clear and we set up to remove my tonsils at

the end of Jan. In all that I was also sent into the allergist to check for

food allergies since I'm finding that I have more food sensitivities since all

this started. So I know what you mean about not wanting to see yet ANOTHER

doctor but realize that it will slow up sooner or later.

Working for me has become difficult. I'm o.k. if I stick with my designs

that I have sewn over and over again, but working on new designs for people

takes me about four times as long as it should. I have to do a bit, let it sit

so my brain can wrap around it, then go back to it and work on it some more. It

becomes very frustrating. Also the position I sit when I work causes my lower

back to cramp much more frequently than it did before so I can only sew in short

bursts now. The prednisone has caused my fingers to bleed easily too so

handsewing the detail work on my clothes has to be done in short spurts and I'm

forever walking around with bandaids on my fingertips. I press on though like

so many others here, just at a much slower pace than I have ever been used to.

Well gosh that's long enough don't you think? I'm in a talkative mood this

morning. We all face struggles with this disease, coming to your own terms

with it takes time. It sounds like you are finally letting yourself feel. Let

the feelings come, talk with your family about them, talk with us about them, no

one here will ever think you are " complaining " too much. You have very valid

fears keeping it in only makes them worse.

Amy

----------

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[Guest guest]

Hi Jen,

I only had a short cycle of Prednisone, and I was not on it long enough to

notice memory problems. But, I do remember very well that college courses are

hard, and they do take lots of work! I had to work ten times harder to get an

A in college than I did in high school :-)

[Guest guest]

Hey Dave.

Whenever I get sick I feel it in my kidneys also and heavier

haematuria.Just about everything I do makes it worse so I don't

worry about it.It won't stop me from doing what I want to do.

Pain is my middle name.

> Happy New Year !

>

> Funny - when I first had my gross haematuria it was right smack

after a nasty virus but I was really really fit - exercising every

day and playing soccer ever week - doctor mention that haematuria

isn't uncommon in athletes (hey it made me feel good lol) and it's

not known what causes it but vigorous exercise can - so I guess for

us IgANs it could make it worse when we do? Not that 18 holes is

particularly vigorous )

>

> Dave

> Re: ADVICE PLEASE

>

>

> ..

> You can post here all you want. We all are in this

together.

> I have had Igan for 28 years and have have blood in urine on and

off

> the entire time.Mine seems to coincide with activities.The day

after

> a round of golf it is heavy.The next day not as bad.It is just a

part

> of Igan.But don't let it frighten you.I am sorry to say that I

live

> on pain meds but without it I don't want to get out of bed.After

a

> while it's like taking aspirin.It does not bother you.

>

> Just keep on living life to it's fullest and don't let it get

you

> down.Like I said,I am still dialysis free after all these years.

>

>

>

>

>

> ----------

>

> Outgoing mail is certified Virus Free.

> Checked by AVG Anti-Virus (http://www.grisoft.com).

> Version: 7.0.209 / Virus Database: 261.5.5 - Release Date:

30/12/2003

>

>

>

[Guest guest]

Hi ,

I am sorry you could not have children. That always breaks my heart when

someone wants children and is not able to. My heart goes out to you.

I understand the fatigue thing. I regularly sleep 10-12 hours a day now! My

husband is always amazed at how much I still yawn and tire out so easily at

night. The past two or three years has gotten much worse on that front.

Before I could get away with 8-9 hours of sleep, but now I really need more. I

can

get by with less for a couple of days, but then I will have to go to sleep by

8 or 9 for a couple of nights to make up for it. I have to plan my " late "

nights now!

[Guest guest]

> > Happy New Year !

> >

> > Funny - when I first had my gross haematuria it was right smack

> after a nasty virus but I was really really fit - exercising every

> day and playing soccer ever week - doctor mention that haematuria

> isn't uncommon in athletes (hey it made me feel good lol) and it's

> not known what causes it but vigorous exercise can - so I guess

for

> us IgANs it could make it worse when we do? Not that 18 holes is

> particularly vigorous )

> >

> > Dave

> > Re: ADVICE PLEASE

> >

> >

> > ..

> > You can post here all you want. We all are in this

> together.

> > I have had Igan for 28 years and have have blood in urine on

and

> off

> > the entire time.Mine seems to coincide with activities.The day

> after

> > a round of golf it is heavy.The next day not as bad.It is just

a

> part

> > of Igan.But don't let it frighten you.I am sorry to say that I

> live

> > on pain meds but without it I don't want to get out of

bed.After

> a

> > while it's like taking aspirin.It does not bother you.

> >

> > Just keep on living life to it's fullest and don't let it get

> you

> > down.Like I said,I am still dialysis free after all these

years.

> >

> >

> >

> >

> >

> > ----------

> >

> > Outgoing mail is certified Virus Free.

> > Checked by AVG Anti-Virus (http://www.grisoft.com).

> > Version: 7.0.209 / Virus Database: 261.5.5 - Release Date:

> 30/12/2003

> >

> >

> >

[Guest guest]

,

I'm the same way when I get sick too....although I never thought

vigourous exercise can exacerbate the condition. I've been ballroom

dancing 3 days a week for the past five years (more when I used

to " compete " ) - perhaps it's part of my problem.

But the benefits outweigh the risk of pain.

Sophia

> > Happy New Year !

> >

> > Funny - when I first had my gross haematuria it was right smack

> after a nasty virus but I was really really fit - exercising every

> day and playing soccer ever week - doctor mention that haematuria

> isn't uncommon in athletes (hey it made me feel good lol) and it's

> not known what causes it but vigorous exercise can - so I guess

for

> us IgANs it could make it worse when we do? Not that 18 holes is

> particularly vigorous )

> >

> > Dave

> > Re: ADVICE PLEASE

> >

> >

> > ..

> > You can post here all you want. We all are in this

> together.

> > I have had Igan for 28 years and have have blood in urine on

and

> off

> > the entire time.Mine seems to coincide with activities.The day

> after

> > a round of golf it is heavy.The next day not as bad.It is just

a

> part

> > of Igan.But don't let it frighten you.I am sorry to say that I

> live

> > on pain meds but without it I don't want to get out of

bed.After

> a

> > while it's like taking aspirin.It does not bother you.

> >

> > Just keep on living life to it's fullest and don't let it get

> you

> > down.Like I said,I am still dialysis free after all these

years.

> >

> >

> >

> >

> >

> > ----------

> >

> > Outgoing mail is certified Virus Free.

> > Checked by AVG Anti-Virus (http://www.grisoft.com).

> > Version: 7.0.209 / Virus Database: 261.5.5 - Release Date:

> 30/12/2003

> >

> >

> >

[Guest guest]

,

Thanks for your kind words.I have been blessed with a wonderful

step-child and wife.It does help fill the void in my life.

I know exactly how you feel about sleep.It always catches up with

you.

When I go from night shift to day shift at work it kills me.Your

sleep habits are disrupted.I have been doing this for 18+ years.

I don't know how much longer I can take it.

I just have to sleep when I can.

> Hi ,

>

> I am sorry you could not have children. That always breaks my

heart when

> someone wants children and is not able to. My heart goes out to

you.

>

> I understand the fatigue thing. I regularly sleep 10-12 hours a

day now! My

> husband is always amazed at how much I still yawn and tire out so

easily at

> night. The past two or three years has gotten much worse on that

front.

> Before I could get away with 8-9 hours of sleep, but now I really

need more. I can

> get by with less for a couple of days, but then I will have to go

to sleep by

> 8 or 9 for a couple of nights to make up for it. I have to plan

my " late "

> nights now!

>

>

>

>

>

[Guest guest]

Sophia,

I agree,you must enjoy life. Your condition is not going

anywhere so you do the traveling.

-- In iga-nephropathy , " yipee_ladybug "

<yipee_ladybug@y...> wrote:

> ,

>

> I'm the same way when I get sick too....although I never thought

> vigourous exercise can exacerbate the condition. I've been

ballroom

> dancing 3 days a week for the past five years (more when I used

> to " compete " ) - perhaps it's part of my problem.

>

> But the benefits outweigh the risk of pain.

>

> Sophia

>

>

> > > Happy New Year !

> > >

> > > Funny - when I first had my gross haematuria it was right

smack

> > after a nasty virus but I was really really fit - exercising

every

> > day and playing soccer ever week - doctor mention that

haematuria

> > isn't uncommon in athletes (hey it made me feel good lol) and

it's

> > not known what causes it but vigorous exercise can - so I guess

> for

> > us IgANs it could make it worse when we do? Not that 18 holes is

> > particularly vigorous )

> > >

> > > Dave

> > > Re: ADVICE PLEASE

> > >

> > >

> > > ..

> > > You can post here all you want. We all are in this

> > together.

> > > I have had Igan for 28 years and have have blood in urine on

> and

> > off

> > > the entire time.Mine seems to coincide with activities.The

day

> > after

> > > a round of golf it is heavy.The next day not as bad.It is

just

> a

> > part

> > > of Igan.But don't let it frighten you.I am sorry to say that

I

> > live

> > > on pain meds but without it I don't want to get out of

> bed.After

> > a

> > > while it's like taking aspirin.It does not bother you.

> > >

> > > Just keep on living life to it's fullest and don't let it

get

> > you

> > > down.Like I said,I am still dialysis free after all these

> years.

> > >

> > >

> > >

> > >

> > >

> > > ----------

> > >

> > > Outgoing mail is certified Virus Free.

> > > Checked by AVG Anti-Virus (http://www.grisoft.com).

> > > Version: 7.0.209 / Virus Database: 261.5.5 - Release Date:

> > 30/12/2003

> > >

> > >

> > >

[Guest guest]

, you certainly have a positive attitude! I aim to get myself back in

shape now - so if I come on here and don't mention 1/2 hour on the exercise

machine someone give me a kick in the ass )

Re: ADVICE PLEASE

Hey Dave.

Whenever I get sick I feel it in my kidneys also and heavier

haematuria.Just about everything I do makes it worse so I don't

worry about it.It won't stop me from doing what I want to do.

Pain is my middle name.

----------

Outgoing mail is certified Virus Free.

Checked by AVG Anti-Virus (http://www.grisoft.com).

Version: 7.0.209 / Virus Database: 261.5.6 - Release Date: 02/01/2004

[Guest guest]

, I don't think I could cope with night/day shifts - funny even

pre-probable-IgAN diagnosis, I was always more tired than most - just shows

perhaps how long I may have had this without realising. For Xmas I got a new

Grisham novel and started reading it and it's just one of those that catches my

interest and I end up reading until I fall asleep - last night it was probably

1am - then today I feel like absolute crap for it .... ah the younger days when

I would party 3 nights a week at least lol

Dave

Re: ADVICE PLEASE

,

Thanks for your kind words.I have been blessed with a wonderful

step-child and wife.It does help fill the void in my life.

I know exactly how you feel about sleep.It always catches up with

you.

When I go from night shift to day shift at work it kills me.Your

sleep habits are disrupted.I have been doing this for 18+ years.

I don't know how much longer I can take it.

I just have to sleep when I can.

----------

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[Guest guest]

You got it Dave!!

-- In iga-nephropathy , " Dave " <garradh@b...> wrote:

> , you certainly have a positive attitude! I aim to get

myself back in shape now - so if I come on here and don't mention

1/2 hour on the exercise machine someone give me a kick in the

ass )

> Re: ADVICE PLEASE

>

>

>

> Hey Dave.

>

> Whenever I get sick I feel it in my kidneys also and heavier

> haematuria.Just about everything I do makes it worse so I don't

> worry about it.It won't stop me from doing what I want to do.

> Pain is my middle name.

>

>

>

>

>

>

> ----------

>

> Outgoing mail is certified Virus Free.

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>

>