New Member

[Guest guest]

Welcome Marie lovely to have you among us. Sorry that you have

IGAN though, but you are among friends here, fondly known in some

quarters as Iganers! Glad to hear you have been doing ok up to now,

what problems are you having? Can we help you in anyway. We can't and

won't give medical advice, but we can compare experiences and offer

support. What a nightmare that you cant get to the doctor because of

the snow, let's hope this abates soon and you can get off and see him or

her.

Take care ok.

UK Moderator

new Member

Hi everyone,

I just wanted to introduce myself. My name is Marie and I live in

NC at the moment. My Husband is a Marine.

I was diagnosed with IGA- N about 2 years ago after having a doctor

misdiagnose the blood in my urine.

I'm doing really good most of the time. Right now, I'm having problems

and can't see my doctor

Because we got snow. That doesn't happen often.

I'm also the mom of an almost 9 year old boy and 7 year old boy.

Thank you,

Marie

[Guest guest]

,

I'm actually a new member to this group too and have been a passive reader

most of the time. After reading yours and several others stories about how

did they discover their IGA, they all seem to be an ordeal to me. Like

myself, after several episodes of bloody urines, my GP had me checked my

liver functions intensively for 2 months and found nothing. Then I seemed to

be very healthy and I almost forgot about the incident. Four months later,

my husband and I decided to buy a little life insurance for my baby son, and

the Ins. Co. rejected my application after a urine test. THAT finally made

me GP to consider kidney problems!

Anyway, I got carried away and wrote too long. If you don't mind, I want to

ask you or anyone who knows, what do you mean by IGA type 2? My neph never

mentioned there are different types.

Thanks.

Lily

new member

Hi I'm a new member.

My name is and I live in Ontario. I was diagnosed with Iga

type 2 in November. I've been very ill since being pregnant with my

21 month old son. The doctors originally thought it was eclampsia

and that it would go away shortly after his birth. My blood pressure

did slowly get better (with mild medication) but I kept up with large

blood and high protein in my urine for a year. No one seemed alarmed

at that and I was told time and again that some people present with

that but are free of disease. Then in July of 2002 my blood pressure

started to creep up again. My GP caught at a routine physical and

said to come back after our month long vacation at our cottage to

have it re checked. By that time I was extremely fatiqued, nauseous,

my mother who is a nurse was alarmed checked my blood pressure found

it to be 190/120. I went into my GP he gave me fast acting drugs to

bring down my blood pressure and a mild maintenance drug and refered

me to an internal medicine specializing in women's health. By the

time that appointment came up I was having blinding headaches nauseau

and extreme fatique. My blood pressure had changed to 165/138 again

unfortunately it took him almost two months for kidney disease to

occur to him. It would have taken probably longer but one day I was

so ill my mother just packed me into the car and rushed me to emerg.

The dr's there quickly determined a 35 year old female who prior to

this pregnacy rode her bike every day, excercised, had two older

children should not have blood pressure like that ordered a battery

of tests and had me in to see a nephrologist the next day.

She has been wonderful gave me some serious drugs to reduce the

blood pressure they work i feel much better, started me on fish oil,

HCT, iron, did a biopsy. She has also ordered a 48 hr harness, ECCO

and a CAT of my brain because of other symptons I presented with and

because of the excessively high and prolonged blood pressure

problems. I have already had these tests and get the results on

Tuesday.

Sorry about the length of this introduction but I almost needed to

see it written out for me too. Due to the three children I only get

online every few days but I would love to hear from any who have time.

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

home page:

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

Visit our companion website at www.igan.ca

[Guest guest]

Hi .

Nice to have another member from my home province.

Good introduction. Maybe you already had very mild IgAN already, and the

real problems only showed up when you had pre-eclampsia. I'm not sure what

you mean by " type 2 " IgAN though.

Pierre

new member

> Hi I'm a new member.

>

> My name is and I live in Ontario. I was diagnosed with Iga

> type 2 in November. I've been very ill since being pregnant with my

> 21 month old son. The doctors originally thought it was eclampsia

> and that it would go away shortly after his birth. My blood pressure

> did slowly get better (with mild medication) but I kept up with large

> blood and high protein in my urine for a year. No one seemed alarmed

> at that and I was told time and again that some people present with

> that but are free of disease. Then in July of 2002 my blood pressure

> started to creep up again. My GP caught at a routine physical and

> said to come back after our month long vacation at our cottage to

> have it re checked. By that time I was extremely fatiqued, nauseous,

> my mother who is a nurse was alarmed checked my blood pressure found

> it to be 190/120. I went into my GP he gave me fast acting drugs to

> bring down my blood pressure and a mild maintenance drug and refered

> me to an internal medicine specializing in women's health. By the

> time that appointment came up I was having blinding headaches nauseau

> and extreme fatique. My blood pressure had changed to 165/138 again

> unfortunately it took him almost two months for kidney disease to

> occur to him. It would have taken probably longer but one day I was

> so ill my mother just packed me into the car and rushed me to emerg.

> The dr's there quickly determined a 35 year old female who prior to

> this pregnacy rode her bike every day, excercised, had two older

> children should not have blood pressure like that ordered a battery

> of tests and had me in to see a nephrologist the next day.

> She has been wonderful gave me some serious drugs to reduce the

> blood pressure they work i feel much better, started me on fish oil,

> HCT, iron, did a biopsy. She has also ordered a 48 hr harness, ECCO

> and a CAT of my brain because of other symptons I presented with and

> because of the excessively high and prolonged blood pressure

> problems. I have already had these tests and get the results on

> Tuesday.

> Sorry about the length of this introduction but I almost needed to

> see it written out for me too. Due to the three children I only get

> online every few days but I would love to hear from any who have time.

>

>

>

>

>

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

> home page:

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

> Visit our companion website at www.igan.ca

>

>

[Guest guest]

Lily

That's a good question! Knowing nothing about IgA I didn't ask and

really assumed I would find out more over time but I haven't. I see

my Dr. tomorrow and that's first on my list. Of course after

reviewing the excellent materiel in this web site I have an inkling

but we'll see.

I'm sorry to hear about the insurance, my son has diabitis so I

understand the frustration of chronic illness even though I haven't

lived with it myself for that long. So many small things that worry

and undermine you that most don't notice, but there's also the good

that you notice the nice things more than many others

> ,

>

> I'm actually a new member to this group too and have been a passive

reader

> most of the time. After reading yours and several others stories

about how

> did they discover their IGA, they all seem to be an ordeal to me.

Like

> myself, after several episodes of bloody urines, my GP had me

checked my

> liver functions intensively for 2 months and found nothing. Then I

seemed to

> be very healthy and I almost forgot about the incident. Four months

later,

> my husband and I decided to buy a little life insurance for my baby

son, and

> the Ins. Co. rejected my application after a urine test. THAT

finally made

> me GP to consider kidney problems!

>

> Anyway, I got carried away and wrote too long. If you don't mind, I

want to

> ask you or anyone who knows, what do you mean by IGA type 2? My

neph never

> mentioned there are different types.

>

> Thanks.

> Lily

> new member

>

>

> Hi I'm a new member.

>

> My name is and I live in Ontario. I was diagnosed with

Iga

> type 2 in November. I've been very ill since being pregnant with

my

> 21 month old son. The doctors originally thought it was eclampsia

> and that it would go away shortly after his birth. My blood

pressure

> did slowly get better (with mild medication) but I kept up with

large

> blood and high protein in my urine for a year. No one seemed

alarmed

> at that and I was told time and again that some people present with

> that but are free of disease. Then in July of 2002 my blood

pressure

> started to creep up again. My GP caught at a routine physical and

> said to come back after our month long vacation at our cottage to

> have it re checked. By that time I was extremely fatiqued,

nauseous,

> my mother who is a nurse was alarmed checked my blood pressure

found

> it to be 190/120. I went into my GP he gave me fast acting drugs

to

> bring down my blood pressure and a mild maintenance drug and

refered

> me to an internal medicine specializing in women's health. By the

> time that appointment came up I was having blinding headaches

nauseau

> and extreme fatique. My blood pressure had changed to 165/138

again

> unfortunately it took him almost two months for kidney disease to

> occur to him. It would have taken probably longer but one day I

was

> so ill my mother just packed me into the car and rushed me to

emerg.

> The dr's there quickly determined a 35 year old female who prior to

> this pregnacy rode her bike every day, excercised, had two older

> children should not have blood pressure like that ordered a battery

> of tests and had me in to see a nephrologist the next day.

> She has been wonderful gave me some serious drugs to reduce the

> blood pressure they work i feel much better, started me on fish

oil,

> HCT, iron, did a biopsy. She has also ordered a 48 hr harness,

ECCO

> and a CAT of my brain because of other symptons I presented with

and

> because of the excessively high and prolonged blood pressure

> problems. I have already had these tests and get the results on

> Tuesday.

> Sorry about the length of this introduction but I almost needed

to

> see it written out for me too. Due to the three children I only get

> online every few days but I would love to hear from any who have

time.

>

>

>

>

>

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

> home page:

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

> Visit our companion website at www.igan.ca

>

>

[Guest guest]

Hello Everyone,

Just joined the group this week. As I browsed and read your messages, I recognized many similarities to my own health stories.

As a child, I had asthma. Apparently I outgrew that, but acquired many food and environmental allergies. I remember going to the Dr. get 6 needles a week as a child. I was too young to understand the exact purpose. But I do remember the number 6 and every Wednesday.

In the early 90's I contracted a bronchitis. My allergist prescribed Allerga-D. and nexium. I also noticed later in that decade that I was short of breath after climbing stairs, and had to take more breaths when doing exercise at a local health club.

I have never taken a flu shot, and in the winter of 2004, I contracted a bad cold. Little did I realize how bad...This is when I was diagnosed with PF. It was a bit of a rollacoster from then on. One pulmonologist put me on massive doses of pred. (I blew up something awful.) I was also on a nebulizer of albuterol 3 times a day and advair. I decided it was just too much medication, and resorted to holistic therapy. It worked well for a good year. And I was able to care for my Sister in her last months of life. This past Dec. I came down with a gastro. infection while on a cruise. This viral infection had control of my life for two months. The lack of energy was unbelievable! After 2 zithromax packs, I was prescribed another round of meds to help with the breathing; Pulmicort, Xopenex, and Spiriva. Again, I just stopped taking them, because of the side effects. My muscles and veins seemed constricted. I like the natural medicines, but I know they are not FDA approved. That and the fact that I'm not following Dr. orders concerns me and my family.

Thanks for reading...all suggestions or comments welcome.

WilmaSee what's free at AOL.com.

[Guest guest]

Hi ,

Thanks, Look forward to sharing.

WilmaSee what's free at AOL.com.

[Guest guest]

Wilma, Welcome aboard!! You'll be amazed at the education you will find here as well as caring and support and humor.

-- Z.fibriotic NSIP/05/PA Potter, reader, and grandparent to Darah "I'm gonna be iron like a lion in Zion." Bob Marley

-------------- Original message -------------- From: jaztrav@...

Hello Everyone,

Just joined the group this week. As I browsed and read your messages, I recognized many similarities to my own health stories.

As a child, I had asthma. Apparently I outgrew that, but acquired many food and environmental allergies. I remember going to the Dr. get 6 needles a week as a child. I was too young to understand the exact purpose. But I do remember the number 6 and every Wednesday.

In the early 90's I contracted a bronchitis. My allergist prescribed Allerga-D. and nexium. I also noticed later in that decade that I was short of breath after climbing stairs, and had to take more breaths when doing exercise at a local health club.

I have never taken a flu shot, and in the winter of 2004, I contracted a bad cold. Little did I realize how bad...This is when I was diagnosed with PF. It was a bit of a rollacoster from then on. One pulmonologist put me on massive doses of pred. (I blew up something awful.) I was also on a nebulizer of albuterol 3 times a day and advair. I decided it was just too much medication, and resorted to holistic therapy. It worked well for a good year. And I was able to care for my Sister in her last months of life. This past Dec. I came down with a gastro. infection while on a cruise. This viral infection had control of my life for two months. The lack of energy was unbelievable! After 2 zithromax packs, I was prescribed another round of meds to help with the breathing; Pulmicort, Xopenex, and Spiriva. Again, I just stopped taking them, because of the side effe

cts. My muscles and veins seemed constricted. I like the natural medicines, but I know they are not FDA approved. That and the fact that I'm not following Dr. orders concerns me and my family.

Thanks for reading...all suggestions or comments welcome.

Wilma

See what's free at AOL.com.

[Guest guest]

Wilma,

Welcome to our group. I also think you should listen to your doctor. Do you see a pulmonary doc. How were you diagnosed? (biopsy, HRCT, etc) I have learned over the last years that meds and treatments that did not make sense to me were the very things that helped me last this long. If you are in an area where there is a good teaching hospital, especially one that specializes in lung disease, you should go see those docs to see exactly where you are and what is proper treatment for your particular form of PF. You may have already done this.

We have all learned so much from one another. I have learned more here than I ever learned from medical professionals. These people here are the sweetest warmest people that you could ever know. We are all in the same boat and rowing upstream. But, for me, I know who is holding the oars.

Hugs, Joyce D

PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA >> Hello Everyone,> Just joined the group this week. As I browsed and read your messages, I > recognized many similarities to my own health stories.> > As a child, I had asthma. Apparently I outgrew that, but acquired many food > and environmental allergies. I remember going to the Dr. get 6 needles a week > as a child. I was too young to understand the exact purpose. But I do > remember the number 6 and every Wednesday.> > In the early 90's I contracted a bronchitis. My allergist prescribed > Allerga-D. and nexium. I also noticed later in that decade that I was short of > breath after climbing stairs, and had to take more breaths when doing exercise at a > local health club. > > I have never taken a flu shot, and in the winter of 2004, I contracted a bad > cold. Little did I realize how bad...This is when I was diagnosed with PF. > It was a bit of a rollacoster from then on. One pulmonologist put me on > massive doses of pred. (I blew up something awful.) I was also on a nebulizer of > albuterol 3 times a day and advair. I decided it was just too much medication, > and resorted to holistic therapy. It worked well for a good year. And I was > able to care for my Sister in her last months of life. This past Dec. I came > down with a gastro. infection while on a cruise. This viral infection had > control of my life for two months. The lack of energy was unbelievable! After 2 > zithromax packs, I was prescribed another round of meds to help with the > breathing; Pulmicort, Xopenex, and Spiriva. Again, I just stopped taking them, > because of the side effects. My muscles and veins seemed constricted. I like > the natural medicines, but I know they are not FDA approved. That and the fact > that I'm not following Dr. orders concerns me and my family.> Thanks for reading...all suggestions or comments welcome. > > Wilma> > > > ************************************** See what's free at http://www.aol.com.>