Re: Questions on time frame and passing IGAN on etc

[Guest guest]

In replu to your questions:

1. The time frame varies from person to person, so I couldn't give

you a definite answer on that one, I'm afraid. With some people, the

progression of their disease is so slow that they may never get to

the point of needing dialysis. There is also the other extreme where

some people's IgAN progresses to ESRF within a few months where they

then need dialysis. And, of course, there's everything in between.

That's the trouble with IgAN, it's quite unpredictable.

2. From what my neph has said, there is actually a bit of debate as

to whether or not IgAN can be passed on from parents to their

children. I think that there's still being studies being done on that.

3. The pressure sounds a bit like flank pain, which a lot of the

members here get from time to time. I know I get mild doses of it

occasionally (luckily, it's not too bothersome for me), and with me,

it's just if I get sick with a cold or something. If you're getting

it regularly like that, maybe it's worth mentioning it to your

nephrologist next time you see him/her.

4. I think most of us here have been advised to keep our BP under

control for that very reason (I know that that's one thing I have to

keep a fairly close eye on, as I was diagnosed with high BP well

before the IgAN appeared - my reading today was 135/85). In terms of

going into a less stressful job to control your BP, it may help a

little, but if you tend to suffer from high BP, chances are, it will

still remain high (but perhaps not quite as high) even by changing

jobs, as stress alone does not cause high BP, although it could be a

contributing factor.

I hope that helps with addressing some of your concerns. All the best.

> Hi everyone,

>

>

> I found this site after being diagnosed with IGAN (after my biopsy

in

> October 2001). I found everyone being nice and very willing to

share.

> Thanks to Pierre for answering a lot of my question.

>

> I want to know whether anyone can share the following with me:

>

> 1) For a person who is dialysis or pre-dialysis stage now, how long

> is the time frame when you first know/get diagnosed as IGAN

positive

> before you reach dialysis or pre-dialysis.

>

> 2) If a male patient have a baby after he is diagnosed as IGAN

> positive, will he pass this on to his babies?

>

> 3)Does anyone feel a certain 'pressure' on the kidneys occasionally

> and especially when under stress? I seem to get it once or twice a

> week recently, as a result of my stress at work.

>

> 4) I have been advised to keep my BP down so as to minimise the

> impact of BP on the kidneys. I am thinking of changing to a less

> stressful job. Has anyone switched to a less stressful job and what

> is the impact on your condition?

>

>

> Again, thanks everyone. It is good to share with each other our

> concerns.

>

>

> Regards,

> Wee Liat

[Guest guest]

I guess there is no real pain that i can feel. But somehow, I feel as

though there is a pair of hands holding onto my kidneys. It happened

the last two weeks (for a few times) when it became quite stressful

at work.

Fortunately, my BP is always in the 135/80 zone. I am on Inhibace.

Thanks.

> > Hi Wee Liat

> >

> > I am glad that you have found this group useful, and yes we are

very

> > willing to share our information and experiences, after all we

are

> all

> > in the same boat.

> > I will try to answer your questions in my own limited way as best

I

> can

> > (but please anyone who can offer more, please jump in).

> >

> > 1. There is no real definitive way to know from

> > diagnosis how long it will be before you could reach ESRD.

> Obviously

> > the poorer your status, the odds on reaching ESRD are greater.

You

> > medical team may be able to offer you some guidance during your

> care,

> > but some if not most of us, may never reach ESRD. Such is the

> > unpredictability of this condition, really it is a case of taking

> each

> > day, keeping an eye on your BP, and try to live a relatively

healthy

> > lifestyle, that is my stance on it.

> >

> > 2. As far as I am aware, IGAN is not a

hereditary

> > condition.

> >

> > 3. I guess this is the famous 'flank pain'

> again. If

> > you read the archives in this group, there is lots of messages on

> this.

> > I do get quite severe flank pain, but I would not describe it as a

> > pressure, it is a real physical pain, that has at its worst had me

> > curled up in the foetal position. I have had kidney stones, so I

> know

> > that pain, one would say you never forget, but this flank pain

> tends to

> > be more prevalent when I am tired or stressed. I would mention

it

> to

> > your doctor if you are worried.

> >

> > 4. Good advice on the BP, crucial in the

> management of

> > this condition. As far as changing your job is concerned, well

> stress

> > is a bad thing all round isn't it, so if you are prone to getting

> > stressed in your job that may not be a bad idea. I actually was

> retired

> > on medical grounds from my job at age 38! I was just so poorly

at

> the

> > time, kept getting viruses through stress, which put me in

hospital

> > twice, I had to retire. But of course I am not suggesting that

> this is

> > right for you, again this has to be a personal choice, but a

stress

> free

> > environment is good for good all round general health.

> >

> > Hope this helps

> >

> > Best wishes

> >

> >

> >

> > Questions on time frame and passing

IGAN

> on

> > etc

> >

> > Hi everyone,

> >

> >

> > I found this site after being diagnosed with IGAN (after my

biopsy

> in

> > October 2001). I found everyone being nice and very willing to

> share.

> > Thanks to Pierre for answering a lot of my question.

> >

> > I want to know whether anyone can share the following with me:

> >

> > 1) For a person who is dialysis or pre-dialysis stage now, how

long

> > is the time frame when you first know/get diagnosed as IGAN

> positive

> > before you reach dialysis or pre-dialysis.

> >

> > 2) If a male patient have a baby after he is diagnosed as IGAN

> > positive, will he pass this on to his babies?

> >

> > 3)Does anyone feel a certain 'pressure' on the kidneys

occasionally

> > and especially when under stress? I seem to get it once or twice

a

> > week recently, as a result of my stress at work.

> >

> > 4) I have been advised to keep my BP down so as to minimise the

> > impact of BP on the kidneys. I am thinking of changing to a less

> > stressful job. Has anyone switched to a less stressful job and

what

> > is the impact on your condition?

> >

> >

> > Again, thanks everyone. It is good to share with each other our

> > concerns.

> >

> >

> > Regards,

> > Wee Liat

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks Everyone for taking the time to answer my question.

The last thing I want is to have a baby and then need to go for

dialysis thereafter.

I guess that is a fact of life for IGANers.

> > Hi everyone,

> >

> >

> > I found this site after being diagnosed with IGAN (after my

biopsy

> in

> > October 2001). I found everyone being nice and very willing to

> share.

> > Thanks to Pierre for answering a lot of my question.

> >

> > I want to know whether anyone can share the following with me:

> >

> > 1) For a person who is dialysis or pre-dialysis stage now, how

long

> > is the time frame when you first know/get diagnosed as IGAN

> positive

> > before you reach dialysis or pre-dialysis.

> >

> > 2) If a male patient have a baby after he is diagnosed as IGAN

> > positive, will he pass this on to his babies?

> >

> > 3)Does anyone feel a certain 'pressure' on the kidneys

occasionally

> > and especially when under stress? I seem to get it once or twice

a

> > week recently, as a result of my stress at work.

> >

> > 4) I have been advised to keep my BP down so as to minimise the

> > impact of BP on the kidneys. I am thinking of changing to a less

> > stressful job. Has anyone switched to a less stressful job and

what

> > is the impact on your condition?

> >

> >

> > Again, thanks everyone. It is good to share with each other our

> > concerns.

> >

> >

> > Regards,

> > Wee Liat