Re: Just introducing myself

[Guest guest]

Hi ...thank's for sending me the link to your website, i read it with great interest. I was suspected of not empting my bladder fully but there was no way i could go through with the xray for that..i tried but there was no way i could pee on a table with people hanging around me...expecially when the person doing the xray was an old school friend! So that was inconclusive. I'm always in my second home, the toilet , and my stomache is always bloated. I'm also up and down all night just to do a few drops...grrrr.

No i haven't had a biopsy yet. The Nephrologist i'm seeing said my symptons are classic of igan and that these days ( i don't know if it's only in Australia or maybe just this Neph) they don't like to do biopsies unless absolutely necessary because of the risk involved. She wants to monitor it every 3 months for a year and if it doesn't settle she'll do a biopsy then.

The first Neph i saw 10 years ago apparently wanted to do a biopsy then (which i wasn't told! He said during the visit that i didn't need it.) When i saw my GP last month she showed me the letter from that neph that was in my file .....which i read. It said i was to have a biopsy that year! 1992. Because i live 3 hours from the city (where all the specialists are) the neph sent the results through to my GP i had back then. I asked the GP "What now" and he read.....mind you the same letter i read this year...and he didn't know what it was and had to get a book off his shelf . He said it wasn't much too worry about. He musn't have read the whole letter and no one had told me this thing even had a name or that i was suppose to have the biopsy.

Oh well i think i'll just put it all behind me ....it's no good being angry.I feel better getting it off my chest though......thanks for listening.

kaz

RE: Just introducing myself

Dear

here, this could get confusing LOL, I am also known as Kaz by my family and friends.

Well to save a lot of explanations and long winded conversation, let me direct you to my website www.the-malts.co.uk there you will see a section IGAN, this tells you the events that led to my diagnosis of IGAN, which are not unsimilar in details as you find yourself, just not so long a period.

You have had a rough time haven’t you, but I am pleased to note that you are now being seen by a Neph. Have you had a kidney biopsy done yet? Or is one planned to be done? This is only the real true way to get to a definitive diagnosis of IGAN, but more crucial is the control of BP, so I am glad that at least that is being addressed now.

I hate to sound like a parrot for all of those who have heard me bang on about this before, but you need to really pester your medics to sit up and take notice of you, I get so mad when I hear stories like yours (and once upon a time mine), where you leave the surgery either upset, confused and worse feeling as though you are making it all up (none of these theories I buy at all), if you feel sick then invariably something needs looking at. If you don’t feel comfortable with your current medics, then change them, I know this is easier said than done, but in the end persistence pays off, well it did for me.

As for the black spots, this could well be a side effect of your medication, a call to your doctors office should put you at peace of mind on that one, and I know many in our group are on BP meds, can any of you guys offer support to here please?

you are right in that you are in the right place, we are here to support you anyway we can, and we all know exactly how you feel, your among friends. Try not to let family members’ lack of sympathy grind you down, in most cases they just don’t want to hear that a loved one has a illness, and when it is as complicated to explain as IGAN can be, then their reactions can be pretty amazing.

Keep in touch ok.

Best wishes

-----Original Message-----From: kaz Sent: 24 September 2001 05:37To: iga-nephropathy Subject: Just introducing myself

Hi, I'm new to the group. I would have no idea where i am with this disease ...which the nephrologist is 99% sure i have. I have to have some scans next week and i've just done blood work and 24 hour collection. Hopefully i haven't got too much kidney damage. This is all a bit of a shock for me.....maybe i should start at the beginning.

My name's ...you can call me Kaz, i'm 36, been married 18 years, have two children aged 10 and 13 and live in Australia.

The first time i noticed something was wrong was when i was 17. I had pains in my back and blood in my urine. I went to the doctor and he said the pains in my back where from carring too much weight ( mind you i was only 52kg!) and showed me exercises to do.As for the blood.....he wasn't too concerned.

Of course this didn't help so i saw another doctor. He ended up sending me to a Uroligist(i think that's what you call water works doctors I was around 22 then. I had every x ray you could think of (well maybe not but it seemed like it!). They even put me in for an exploritory of my bladder. The last time i saw this doctor he had lost my kidney xray .....which was sent to the library at the hospital and he didn't know why! He told me to never mind it's probably just a raspberry birthmark on my kidney and that's why i had blood in my urine.......don't worry about it..........I CAN'T BELIEVE THESE DOCTORS !

My husband and i decided to have a family when i was around 23 . During my pregnancy i had slightly high blood pressure which got worse toward the end. But everything went well. My second pregnancy also went well except for the blood pressure and having to go to theatre because the cord had come away from the placenta.....oh and don't let me forget my son was born with Autism! (which worries me because there are no explanations why!)

After both pregnancies i had blood in my urine for quiet some time being worse after my son was born.

That's when the doctor decided to send me to nephrologist.

Well all i did was pee in a jar and he came back and said.... yes it was kidney blood. He then said it was an abnormality ,where if you get a virus the kidney swells and lets out blood cells. I could have a biopsy but i didn't need one there and then.......THAT WAS IT! No follow up mentioned .....or that it was a progressive disease!

That was ten years ago!

I haven't been feeling well for years and the tiredness has been getting worse. My blood pressure has been above normal everytime i'd seen a doctor but they didn't seem to concerned. I got to the stage the only time i saw a doctor was for my kids. But the past 12 months i have been feeling so tired and sick all the time that i ended up in the doctors office crying .....she decided i didn't feel well because i'd put on weight....so i went on a diet. I lost 2 stone and felt worse than ever and my blood pressure didn't come down at all. That doctor finally left and i saw another one (by the way everytime i saw a new doctor i told them about the so called abnormality with my kidney's), this doctor new straight away what was wrong with me and said she couldn't believe i'd had no follow up! Apparently her husband has IGA nephropathy ......so i'll be sticking with her!

She sent me to a nephrologist a couple of weeks ago who now has me on blood pressure tablets...not that they're working yet, I'm still seeing lots of black floating spots! She said she will explain more to me when i see her next...but i thought i would look it up on the net. I couldn't believe it...a disease, when for 10 years i thought it was just an abnormality!

Well after nearly 20 years of complaining i finally have a name for what they suspect i have. I'm very angry at the moment , so i'm sorry if i'm boring you all to death..... i just can't believe what they have put me through just to get a diagnosis!

I think it was Malt's post that said about not much support from family members. I'm finding that at the moment. I mentioned to my mother in law that IGA was a disease and started to say how angry i was this had gone on for so long and nothing done about it...... she said "I have a question".....i thought she ment about the disease and she said " Do you get your family allowance weekly or fortnightly? When i got home i just cried.......this is a big thing for me and she didn't even care to hear about it!

Well that's my story so far, i've got a lot to learn about IGA ......I think i'm now in the right place!

kaz

[Guest guest]

Pierre, i'm sorry to hear you have progressed that far, that's not good news. How long has it taken you to get to that stage? Hopefully my case isn't any more than mild or moderate.....I'll think positive !

I'm sure the black spots are just a sign of blood pressure, i've had them on and off for years and permantly the last 12 months or so. Nothing to do with medication. I have developed a cough though since i started taking Tritace.

kaz

Just introducing myself

Hi, I'm new to the group. I would have no idea where i am with this disease ...which the nephrologist is 99% sure i have. I have to have some scans next week and i've just done blood work and 24 hour collection. Hopefully i haven't got too much kidney damage. This is all a bit of a shock for me.....maybe i should start at the beginning.

My name's ...you can call me Kaz, i'm 36, been married 18 years, have two children aged 10 and 13 and live in Australia.

The first time i noticed something was wrong was when i was 17. I had pains in my back and blood in my urine. I went to the doctor and he said the pains in my back where from carring too much weight ( mind you i was only 52kg!) and showed me exercises to do.As for the blood.....he wasn't too concerned.

Of course this didn't help so i saw another doctor. He ended up sending me to a Uroligist(i think that's what you call water works doctors I was around 22 then. I had every x ray you could think of (well maybe not but it seemed like it!). They even put me in for an exploritory of my bladder. The last time i saw this doctor he had lost my kidney xray .....which was sent to the library at the hospital and he didn't know why! He told me to never mind it's probably just a raspberry birthmark on my kidney and that's why i had blood in my urine.......don't worry about it..........I CAN'T BELIEVE THESE DOCTORS !

My husband and i decided to have a family when i was around 23 . During my pregnancy i had slightly high blood pressure which got worse toward the end. But everything went well. My second pregnancy also went well except for the blood pressure and having to go to theatre because the cord had come away from the placenta.....oh and don't let me forget my son was born with Autism! (which worries me because there are no explanations why!)

After both pregnancies i had blood in my urine for quiet some time being worse after my son was born.

That's when the doctor decided to send me to nephrologist.

Well all i did was pee in a jar and he came back and said.... yes it was kidney blood. He then said it was an abnormality ,where if you get a virus the kidney swells and lets out blood cells. I could have a biopsy but i didn't need one there and then.......THAT WAS IT! No follow up mentioned .....or that it was a progressive disease!

That was ten years ago!

I haven't been feeling well for years and the tiredness has been getting worse. My blood pressure has been above normal everytime i'd seen a doctor but they didn't seem to concerned. I got to the stage the only time i saw a doctor was for my kids. But the past 12 months i have been feeling so tired and sick all the time that i ended up in the doctors office crying .....she decided i didn't feel well because i'd put on weight....so i went on a diet. I lost 2 stone and felt worse than ever and my blood pressure didn't come down at all. That doctor finally left and i saw another one (by the way everytime i saw a new doctor i told them about the so called abnormality with my kidney's), this doctor new straight away what was wrong with me and said she couldn't believe i'd had no follow up! Apparently her husband has IGA nephropathy ......so i'll be sticking with her!

She sent me to a nephrologist a couple of weeks ago who now has me on blood pressure tablets...not that they're working yet, I'm still seeing lots of black floating spots! She said she will explain more to me when i see her next...but i thought i would look it up on the net. I couldn't believe it...a disease, when for 10 years i thought it was just an abnormality!

Well after nearly 20 years of complaining i finally have a name for what they suspect i have. I'm very angry at the moment , so i'm sorry if i'm boring you all to death..... i just can't believe what they have put me through just to get a diagnosis!

I think it was Malt's post that said about not much support from family members. I'm finding that at the moment. I mentioned to my mother in law that IGA was a disease and started to say how angry i was this had gone on for so long and nothing done about it...... she said "I have a question".....i thought she ment about the disease and she said " Do you get your family allowance weekly or fortnightly? When i got home i just cried.......this is a big thing for me and she didn't even care to hear about it!

Well that's my story so far, i've got a lot to learn about IGA ......I think i'm now in the right place!

kaz

[Guest guest]

Hi Kaz. I'm in my 24th+ year or so after the first appearance of blood and protein in the urine. Blood came first, then protein. By 1993, it was still considered very mild, and it very slowly got worse from there, with serum creatinine rising a bit every checkup. But it was still moderate until sometime last year.

Refresh my memory. Are those black spots in your urine, or your vision?

Sounds like you're among the 20% or more who cough on ACE inhibitors. Some people put up with it, but if it goes on forever, you can end up traumatizing your vocal chords and then the coughing feeds on itself, not to mention that it's very annoying. If you mention it to your doc, you would likely be switched to a newer cousin of the ACE inhibitors (drugs like losartan, valsartan and irbesartan).

Pierre

Re: Just introducing myself

Pierre, i'm sorry to hear you have progressed that far, that's not good news. How long has it taken you to get to that stage? Hopefully my case isn't any more than mild or moderate.....I'll think positive !

I'm sure the black spots are just a sign of blood pressure, i've had them on and off for years and permantly the last 12 months or so. Nothing to do with medication. I have developed a cough though since i started taking Tritace.

kaz

[Guest guest]

Hi Kaz

My pleasure. Glad you liked

the website, I know my story goes on a bit, but that is how I felt at the

time. If I were to do it now, it

would probably fit on one page LOL, but useful for me to put my feelings out at

the time.

Certainly a kidney biopsy comes with a risk, but they are really

proficient at it nowadays. I have

yet to hear from anyone in this group who has had one, where it has gone

horribly wrong (c’mon then guys, I just know someone is going to prove me

wrong). As long as you are

being monitored, then I guess that is how your Neph wants to handle it. Mine right from consultation, was

adamant that he wanted to do this, to get a definitive answer, and personally I

wanted to know good or bad. If you

are happy with this course of action, then stick with it I guess.

Yes I can understand why you would not have liked the bladder function

test. A bit degrading isn’t it. Beat this then, I have had three, and

on the last one, I allowed a whole entourage of students in the room to watch

how it was done. I am afraid I am well

past the shyness bit with doctors, having had at least 6 operations to remove

ovarian cysts, and countless internal examinations (ok guys women’s talk, but

now you know what us ladies have to suffer LOL!!!!). My current urologist was astounded when I agreed to it, I am

the only women on his list that allowed it, paid dividends though, showed up a

problem, and I received first class treatment, and was thoroughly spoilt by him

when I was in hospital. I always

think how do these student doctors get to know their stuff, without some real

hands on so to speak (no not hands on literally, I draw the line at some point!!). If you are still having problems Kaz

you really need to get this sorted, bladder, urinary tract, ureter problems,

can cause other problems with your kidneys, and you are showing classic signs

of a bladder type problem, hence the ‘pee test’. Of course only you know what you want, but I would

thoroughly recommend it, since my operation things are much improved. Good luck ok.

Best wishes

-----Original

Message-----

From: kaz

Sent: 25 September 2001 10:08

To: iga-nephropathy

Subject: Re:

Just introducing myself

Hi

...thank's for sending me the link to your website, i read it with great

interest. I was suspected of not empting my bladder fully but there was no way

i could go through with the xray for that..i tried but there was no way i could

pee on a table with people hanging around me...expecially when the person doing

the xray was an old school friend! So that was inconclusive. I'm always in my

second home, the toilet , and my stomache is always bloated. I'm also up and

down all night just to do a few drops...grrrr.

No i

haven't had a biopsy yet. The Nephrologist i'm seeing said my symptons are

classic of igan and that these days ( i don't know if it's only in Australia or

maybe just this Neph) they don't like to do biopsies unless absolutely

necessary because of the risk involved. She wants to monitor it every 3 months

for a year and if it doesn't settle she'll do a biopsy then.

The

first Neph i saw 10 years ago apparently wanted to do a biopsy then (which i

wasn't told! He said during the visit that i didn't need it.) When i saw my GP

last month she showed me the letter from that neph that was in my file

......which i read. It said i was to have a biopsy that year! 1992. Because i

live 3 hours from the city (where all the specialists are) the neph sent

the results through to my GP i had back then. I asked the GP " What

now " and he read.....mind you the same letter i read this year...and he

didn't know what it was and had to get a book off his shelf . He said it wasn't

much too worry about. He musn't have read the whole letter and no one had told

me this thing even had a name or that i was suppose to have the biopsy.

Oh well

i think i'll just put it all behind me ....it's no good being angry.I feel

better getting it off my chest though......thanks for listening.

kaz

-----

Original Message -----

From: Malt

To: iga-nephropathy

Sent: Monday, September 24,

2001 4:17 PM

Subject: RE:

Just introducing myself

Dear

here, this could get

confusing LOL, I am also known as Kaz by my family and friends.

Well to save a lot of

explanations and long winded conversation, let me direct you to my website www.the-malts.co.uk there you will see a

section IGAN, this tells you the events that led to my diagnosis of IGAN, which

are not unsimilar in details as you find yourself, just not so long a period.

You have had a rough time

haven’t you, but I am pleased to note that you are now being seen by a

Neph. Have you had a kidney biopsy

done yet? Or is one planned to be done?

This is only the real true way to get to a definitive diagnosis of IGAN,

but more crucial is the control of BP, so I am glad that at least that is being

addressed now.

I hate to sound like a

parrot for all of those who have heard me bang on about this before, but

you need to really pester your medics to sit up and take notice of you, I get

so mad when I hear stories like yours (and once upon a time mine), where you

leave the surgery either upset, confused and worse feeling as though you are

making it all up (none of these theories I buy at all), if you feel sick then

invariably something needs looking at.

If you don’t feel comfortable with your current medics, then change

them, I know this is easier said than done, but in the end persistence pays

off, well it did for me.

As for the black spots,

this could well be a side effect of your medication, a call to your doctors

office should put you at peace of mind on that one, and I know many in our

group are on BP meds, can any of you guys offer support to here please?

you are right in that

you are in the right place, we are here to support you anyway we can, and we

all know exactly how you feel, your among friends. Try not to let family members’ lack of sympathy grind you

down, in most cases they just don’t want to hear that a loved one has a

illness, and when it is as complicated to explain as IGAN can be, then their

reactions can be pretty amazing.

Keep in touch ok.

Best wishes

Just

introducing myself

Hi, I'm new to the group. I would have no idea where i am with

this disease ...which the nephrologist is 99% sure i have. I have to have some

scans next week and i've just done blood work and 24 hour collection.

Hopefully i haven't got too much kidney damage. This is all a bit of a shock

for me.....maybe i should start at the beginning.

My name's ...you can call me Kaz, i'm 36, been married 18

years, have two children aged 10 and 13 and live in Australia.

The first time i noticed something was wrong was when i was 17. I

had pains in my back and blood in my urine. I went to the doctor and he said

the pains in my back where from carring too much weight ( mind you i was only

52kg!) and showed me exercises to do.As for the blood.....he wasn't too

concerned.

Of course this didn't help so i saw another doctor. He ended up

sending me to a Uroligist(i think that's what you call water works

doctors I was around 22 then. I had every x ray you could think of

(well maybe not but it seemed like it!). They even put me in for an exploritory

of my bladder. The last time i saw this doctor he had lost my kidney xray

......which was sent to the library at the hospital and he didn't know why! He

told me to never mind it's probably just a raspberry birthmark on my kidney and

that's why i had blood in my urine.......don't worry about it..........I CAN'T

BELIEVE THESE DOCTORS !

My husband and i decided to have a family when i was around 23 .

During my pregnancy i had slightly high blood pressure which got worse toward

the end. But everything went well. My second pregnancy also went well except

for the blood pressure and having to go to theatre because the cord had come

away from the placenta.....oh and don't let me forget my son was born with

Autism! (which worries me because there are no explanations why!)

After both pregnancies i had blood in my urine for quiet some time

being worse after my son was born.

That's when the doctor decided to send me to nephrologist.

Well all i did was pee in a jar and he came back and said.... yes

it was kidney blood. He then said it was an abnormality ,where if you get a

virus the kidney swells and lets out blood cells. I could have a biopsy but i

didn't need one there and then.......THAT WAS IT! No follow up mentioned

......or that it was a progressive disease!

That was ten years ago!

I haven't been feeling well for years and the tiredness has been

getting worse. My blood pressure has been above normal everytime i'd seen a

doctor but they didn't seem to concerned. I got to the stage the only time i

saw a doctor was for my kids. But the past 12 months i have been feeling

so tired and sick all the time that i ended up in the doctors office crying

......she decided i didn't feel well because i'd put on weight....so i went on a

diet. I lost 2 stone and felt worse than ever and my blood pressure didn't come

down at all. That doctor finally left and i saw another one (by the way

everytime i saw a new doctor i told them about the so called abnormality with

my kidney's), this doctor new straight away what was wrong with me and said she

couldn't believe i'd had no follow up! Apparently her husband has IGA

nephropathy ......so i'll be sticking with her!

She sent me to a nephrologist a couple of weeks ago who now has me

on blood pressure tablets...not that they're working yet, I'm still seeing lots

of black floating spots! She said she will explain more to me when i see her

next...but i thought i would look it up on the net. I couldn't believe it...a

disease, when for 10 years i thought it was just an abnormality!

Well after nearly 20 years of complaining i finally have a name

for what they suspect i have. I'm very angry at the moment , so i'm sorry if

i'm boring you all to death..... i just can't believe what they have put

me through just to get a diagnosis!

I think it was Malt's post that said about not

much support from family members. I'm finding that at the moment. I

mentioned to my mother in law that IGA was a disease and started to say how

angry i was this had gone on for so long and nothing done about it...... she

said " I have a question " .....i thought she ment about the disease and

she said " Do you get your family allowance weekly or fortnightly?

When i got home i just cried.......this is a big thing for me and she didn't

even care to hear about it!

Well that's my story so far, i've got a lot to learn about IGA

.......I think i'm now in the right place!

kaz

[Guest guest]

About these black spots --

My mother has had severe vision problems all my life.

She suffers from retinitus pigmentosis, a form of

macular degeneration. (not sure of spelling here so

please bear with me) Macular degeneration is a

condition where there is bleeding into the eye,

resulting in a kind of reverse tunnel vision. My

mother sees everything as though it's being filmed for

court tv, there's a big dark spot in the middle of

everything she sees. I've had every eye test it is

possible to have over the years, they used to think my

Mother's condition predisposed her kids to vision

problems, but I've always had perfect vision.

Anyway the point of telling you this is to shed some

light, (however limited ) on black spots or " floaters "

in your vision. There is soemthing in your eye, (I

think it's the retinal nerve) that is extremely

sensitive to pressure. Pressure on the eye can show up

as black spots, (close your eyes and gently press your

fingertips on your eyelids, you'll see what I mean)

I know from my own experience with high blood

pressure, (which I've stuggled with since my early

20's, another hereditary thing) that when my blood

pressure is high I seem to have more spots in my

vision, they float by as though they were microscopic

specks of stuff in the fluid lubricating my eyes

orsometimes they seem to kind of bloom and subside.

The doctor tells me they are not blood spots (which

would freak me out for fear of an aneuryism) and I

should not be worried about anything other than

reducing my blood pressure. (I haven't had them in

years) My point is, dark spots can happen for a number

of reasons but bleeding into the eye is a whole

different thing and it usually appears as a stationary

dark spot that doesn't move around or go away.

(Little clots of blood sound absolutely terrifying to

me)

For me, exercise is the key to reducing blood

pressure. I am overweight but I'm not obese. You

wouldn't notice the extra weight to look at me. Within

2 weeks of maintaining an exercise routine my blood

pressure drops considerably.

Exercise reduces stress, vents anxieties, gives you

time to think and gets the blood pumping. I have had

the best results with deep water aquafit, which can be

as strenuous as aerobics done with weights or as

moderate as plain old swimming depending on how hard

you push yourself. 3 hours of aquafit a week and two

good walks keeps everything under control for me.

I also cut out caffeine and cut way back on salt but

that doesn't seem to matter as much as the exercise.

--- kaz wrote:

> Pierre, i'm sorry to hear you have progressed that

> far, that's not good news. How long has it taken you

> to get to that stage? Hopefully my case isn't any

> more than mild or moderate.....I'll think positive !

>

>

> I'm sure the black spots are just a sign of blood

> pressure, i've had them on and off for years and

> permantly the last 12 months or so. Nothing to do

> with medication. I have developed a cough though

> since i started taking Tritace.

>

> kaz

> Just introducing

> myself

>

>

> Hi, I'm new to the group. I would have no idea

> where i am with this disease ...which the

> nephrologist is 99% sure i have. I have to have some

> scans next week and i've just done blood work and 24

> hour collection. Hopefully i haven't got too much

> kidney damage. This is all a bit of a shock for

> me.....maybe i should start at the beginning.

>

> My name's ...you can call me Kaz, i'm 36,

> been married 18 years, have two children aged 10 and

> 13 and live in Australia.

>

> The first time i noticed something was wrong was

> when i was 17. I had pains in my back and blood in

> my urine. I went to the doctor and he said the pains

> in my back where from carring too much weight ( mind

> you i was only 52kg!) and showed me exercises to

> do.As for the blood.....he wasn't too concerned.

>

> Of course this didn't help so i saw another

> doctor. He ended up sending me to a Uroligist(i

> think that's what you call water works doctors I

> was around 22 then. I had every x ray you could

> think of (well maybe not but it seemed like it!).

> They even put me in for an exploritory of my

> bladder. The last time i saw this doctor he had lost

> my kidney xray .....which was sent to the library at

> the hospital and he didn't know why! He told me to

> never mind it's probably just a raspberry birthmark

> on my kidney and that's why i had blood in my

> urine.......don't worry about it..........I CAN'T

> BELIEVE THESE DOCTORS !

>

> My husband and i decided to have a family when i

> was around 23 . During my pregnancy i had slightly

> high blood pressure which got worse toward the end.

> But everything went well. My second pregnancy also

> went well except for the blood pressure and having

> to go to theatre because the cord had come away from

> the placenta.....oh and don't let me forget my son

> was born with Autism! (which worries me because

> there are no explanations why!)

> After both pregnancies i had blood in my urine

> for quiet some time being worse after my son was

> born.

>

> That's when the doctor decided to send me to

> nephrologist.

>

> Well all i did was pee in a jar and he came back

> and said.... yes it was kidney blood. He then said

> it was an abnormality ,where if you get a virus the

> kidney swells and lets out blood cells. I could have

> a biopsy but i didn't need one there and

> then.......THAT WAS IT! No follow up mentioned

> .....or that it was a progressive disease!

>

> That was ten years ago!

>

> I haven't been feeling well for years and the

> tiredness has been getting worse. My blood pressure

> has been above normal everytime i'd seen a doctor

> but they didn't seem to concerned. I got to the

> stage the only time i saw a doctor was for my kids.

> But the past 12 months i have been feeling so tired

> and sick all the time that i ended up in the doctors

> office crying .....she decided i didn't feel well

> because i'd put on weight....so i went on a diet. I

> lost 2 stone and felt worse than ever and my blood

> pressure didn't come down at all. That doctor

> finally left and i saw another one (by the way

> everytime i saw a new doctor i told them about the

> so called abnormality with my kidney's), this doctor

> new straight away what was wrong with me and said

> she couldn't believe i'd had no follow up!

> Apparently her husband has IGA nephropathy ......so

> i'll be sticking with her!

>

> She sent me to a nephrologist a couple of weeks

> ago who now has me on blood pressure tablets...not

> that they're working yet, I'm still seeing lots of

> black floating spots! She said she will explain more

> to me when i see her next...but i thought i would

> look it up on the net. I couldn't believe it...a

> disease, when for 10 years i thought it was just an

> abnormality!

>

> Well after nearly 20 years of complaining i

> finally have a name for what they suspect i have.

> I'm

=== message truncated ===

_______________________________________________________

[Guest guest]

Sam,

I recently saw a study that seemed to indicate that statins (used to

lower lipids) help to slow down macular degeneration.

Marty

> > Pierre, i'm sorry to hear you have progressed that

> > far, that's not good news. How long has it taken you

> > to get to that stage? Hopefully my case isn't any

> > more than mild or moderate.....I'll think positive !

> >

> >

> > I'm sure the black spots are just a sign of blood

> > pressure, i've had them on and off for years and

> > permantly the last 12 months or so. Nothing to do

> > with medication. I have developed a cough though

> > since i started taking Tritace.

> >

> > kaz

> > Just introducing

> > myself

> >

> >

> > Hi, I'm new to the group. I would have no idea

> > where i am with this disease ...which the

> > nephrologist is 99% sure i have. I have to have some

> > scans next week and i've just done blood work and 24

> > hour collection. Hopefully i haven't got too much

> > kidney damage. This is all a bit of a shock for

> > me.....maybe i should start at the beginning.

> >

> > My name's ...you can call me Kaz, i'm 36,

> > been married 18 years, have two children aged 10 and

> > 13 and live in Australia.

> >

> > The first time i noticed something was wrong was

> > when i was 17. I had pains in my back and blood in

> > my urine. I went to the doctor and he said the pains

> > in my back where from carring too much weight ( mind

> > you i was only 52kg!) and showed me exercises to

> > do.As for the blood.....he wasn't too concerned.

> >

> > Of course this didn't help so i saw another

> > doctor. He ended up sending me to a Uroligist(i

> > think that's what you call water works doctors I

> > was around 22 then. I had every x ray you could

> > think of (well maybe not but it seemed like it!).

> > They even put me in for an exploritory of my

> > bladder. The last time i saw this doctor he had lost

> > my kidney xray .....which was sent to the library at

> > the hospital and he didn't know why! He told me to

> > never mind it's probably just a raspberry birthmark

> > on my kidney and that's why i had blood in my

> > urine.......don't worry about it..........I CAN'T

> > BELIEVE THESE DOCTORS !

> >

> > My husband and i decided to have a family when i

> > was around 23 . During my pregnancy i had slightly

> > high blood pressure which got worse toward the end.

> > But everything went well. My second pregnancy also

> > went well except for the blood pressure and having

> > to go to theatre because the cord had come away from

> > the placenta.....oh and don't let me forget my son

> > was born with Autism! (which worries me because

> > there are no explanations why!)

> > After both pregnancies i had blood in my urine

> > for quiet some time being worse after my son was

> > born.

> >

> > That's when the doctor decided to send me to

> > nephrologist.

> >

> > Well all i did was pee in a jar and he came back

> > and said.... yes it was kidney blood. He then said

> > it was an abnormality ,where if you get a virus the

> > kidney swells and lets out blood cells. I could have

> > a biopsy but i didn't need one there and

> > then.......THAT WAS IT! No follow up mentioned

> > .....or that it was a progressive disease!

> >

> > That was ten years ago!

> >

> > I haven't been feeling well for years and the

> > tiredness has been getting worse. My blood pressure

> > has been above normal everytime i'd seen a doctor

> > but they didn't seem to concerned. I got to the

> > stage the only time i saw a doctor was for my kids.

> > But the past 12 months i have been feeling so tired

> > and sick all the time that i ended up in the doctors

> > office crying .....she decided i didn't feel well

> > because i'd put on weight....so i went on a diet. I

> > lost 2 stone and felt worse than ever and my blood

> > pressure didn't come down at all. That doctor

> > finally left and i saw another one (by the way

> > everytime i saw a new doctor i told them about the

> > so called abnormality with my kidney's), this doctor

> > new straight away what was wrong with me and said

> > she couldn't believe i'd had no follow up!

> > Apparently her husband has IGA nephropathy ......so

> > i'll be sticking with her!

> >

> > She sent me to a nephrologist a couple of weeks

> > ago who now has me on blood pressure tablets...not

> > that they're working yet, I'm still seeing lots of

> > black floating spots! She said she will explain more

> > to me when i see her next...but i thought i would

> > look it up on the net. I couldn't believe it...a

> > disease, when for 10 years i thought it was just an

> > abnormality!

> >

> > Well after nearly 20 years of complaining i

> > finally have a name for what they suspect i have.

> > I'm

> === message truncated ===

>

>

> _______________________________________________________

>

[Guest guest]

Hi

I am sure I read a study somewhere that those on Ace Inhibitors who have a

cough would benefit from taking iron supplements, because the ace inhib class

drugs deplete a certain substance in the body. I think the study was done

in Korea and published in the Lancet. Has anyone else come across it? It

was quite recent.

Jeanie