new member

[Guest guest]

Welcome to the group!

Well, let's hope it will be 10 years rather than 5!

In 1993, after I had my biopsy, they told me my

kidneys might fail completely in 6 months, 5 years, 25

years, or so long from then that I would have died of

old age before it happened. Now, 8 years later, my

neph is telling me 2 years. So, if she's right, it

will have been about 10 years since the biopsy, and

about 27 years since the symptoms of proteinuria and

hematuria first appeared. Everyone is different of

course. You have high proteinuria, which I've never

had. But I have severe hypertension, which you don't

appear to have. Predictions are predictions. All we

can do is hope that it will be later rather than

sooner, and hope that the doc is unduly pessimistic!

I don't know about this idea of the proteinuria

getting better because more of your glomeruli have

" shut down " . Your creatinine doesn't seem that bad,

and your BP doesn't seem very bad either. Could it be

that this has happened since you started on the Avapro

(which I take also)? It wouldn't be unusual for a drug

like Avapro to bring proteinuria down a bit and serum

creatinine up a bit. Are you taking the 150 mg dose,

or 300 mg?

I don't know, but your neph's prediction seems pretty

dire for someone who still has better than 50% kidney

function. Of course, I don't know all the specifics,

and you can't always go by just the numbers. You never

know -- the lower protein diet may change things, in a

case like yours.

Pierre

P.S. The number of emails is never a problem on a

group like this one, because, while there is a lot

more message traffic, you can change your settings to

web only whenever and as often as you like. Except for

the ad banners that are unavoidable, a Yahoo Group is

a heck of a lot more convenient for users than a

listserv-based group.

--- cafejimbo@... wrote:

> Hi there,

> New to this group, but have heard of it from both

> www.kidneypatient.org.uk

> and it was discussed on the igan foundation email

> list. I have stopped being

> on that list as I just couldn't deal with getting so

> many emails, it gets really

> draining. But I still appreciate getting

> information from these kinds of things

> just prefer the website. Hello Pierre, we emailed

> on that list about 18months

> ago. Since then my IgA has progressed and looks

> like it will go all the way.

> My neph has said many things to me which I haven't

> heard anywhere else, so

> I was interested to share them and see what other

> people thought.

>

> As back story, I have had Iga for 4 years now

> (confirmed by biopsy when I

> was 26), and have had nephrotic range proteinuria

> that whole time. It has

> consistently been over 4g/24hr. Prob got from streph

> throat whilst

> backpacking in Turkey, recurred in UK, but only

> confirmed by GP/biopsy back in

> Australia. I have had 2 courses of steroids with

> no effect. I have microscopic

> hemetura. Recently my protein dropped from a high

> of over 5gram last year

> to 3.8g, but the creatine went from 0.8 to 1.3. My

> GP said this seemed good,

> my neph was very concerned and I had a kidney

> function test which

> suggested I have 56% kidney function. She, my neph,

> now believes I will

> have somewhere between 5 and 10 years before I reach

> ESRF. She doesn't

> know but it's the trend she is looking at. I am on

> Avapro to lower blood

> pressure (usually 120/70 on the drugs), Lipitor to

> lower cholesterol (went

> from 5ish to 4ish in 2 months thanks to drug), and

> usually I take a diaretic as

> well, get occasional back pain - all the usuals.

>

> Of interest - my neph described that the

> relationship between creatine and

> kidney function is such that eg. in my case although

> its hard to know the

> increase from 0.8 to 1.3 may have indicated a change

> of 70% to 56% KF.

> while a change from creatine of 4 to 6 may be the

> diff between 25% and

> 20%. This is an exageration, but is just to point

> out that small changes in

> creatine at the low end, may mean very big changes

> in kidney function and be

> particularly indicative of change in the disease.

> BUT it is very difficult to

> measure at that stage. By the time it gets to 4 or

> 5 it is easier to measure

> but by then the trend is pretty clear.

> I had hoped to be one of the IgA people for whom it

> didn't progress but she

> now tells me that proteinuria consistently as high

> as I have had it is the most

> likely symptom to suggest that ESKF will be the

> result, eg. more likely than

> gross hemeaturia (mine has always been mirco).

> The drop in my proteinuria and resulting increase in

> blood protein probably

> suggested to my neph that more of my kidney has

> actually died/stopped and

> hence isn't leaking anymore because it isn't doing

> anything.

> I am seeing a hospital dietian next week to get

> advise on a moderately low

> protein diet. My neph has suggested its worth a go,

> (push towards 10 rather

> than 5 years), with a goal of 60g protein per day.

> Finally, she isn't ruling out pregnancy although

> warning that there are lots of

> risks and will probably result in bring my kidney

> failure on earlier but hey, it's

> going to happen anyway.

> Anyway that's my world at the moment. I'd be

> interested to hear if anyone

> else has been told similar things. I do trust my

> neph greatly and I believe

> she is considered to be one of the main experts

> particular on renal problems

> and pregnancy in Australia, but this sort of stuff

> is rarely mentioned in any

> web info I've read.

>

>

>

>

[Guest guest]

Hello Group

My nane is April Berendt let me introdued my self and my family to you.  We live

in lower Michigan very close to Ohio border.My husband Emil and I have been

married almost 17 years and have 3 children.  who ia almost 16, who

is 14, and who will soon be 5. was adopted when he was 1 month old

and then we were told he had down syndorme but just reciently he has been

diognosed with ADHD and his dr is wantiong up to go for gentic testing she

thinks he may have MDS.  We have always wondered why he seemed to be a little

different from other downs children we have encountered.  We have joined this

group to help us find some answers and more information about MDS.  Any

information or avdice will be a great assest.

April

[Guest guest]

Hi Gaby.

Congratulations on your coming little girl!

I guarantee that none of us had heard of MDS before we got the diagnosis, so

you're in good company.

I'm glad you found this group - I know that I found them very supportive when my

wife and I were in your situation 2 years ago. Sorry we don't have many answers

to your questions... the uncertainty is frustrating. Once Sofia was born, all

the questions and worries faded away. Sure there are (and will be) challenges,

but being around her is so much fun that the unknown doesn't weigh on us at all

anymore. You are at the toughest point right now, and it seems that you're

holding up well.

father to Will 4 and Sofia 1

>

>

>

>

> To everybody:

>

> Thank you su much for sharing your stories and advices with us, I will be

taking all notes possible to ask my docs as soon as next appointments come

(early May) they already adviced to get electro cardiograms done for the baby

around my 22nd week and I'll ask about any other check ups we need to get done

for the sake of this little girl.

>

> This situation has brought our families even closer and is making us work to

strenghten our love and faith. We believe that God has a purpose for everything

and everybody and we'll find day by day what is that He wants us to do out of

all this. We believe he can still operate miracles impossible for us to do and

imagine, but also that if He wants us to go through this test, He will also

enlight us to do the best to represent him as parents of this little angel.

>

> Again, thank you so much for the welcoming, the advice, the moral support that

you guys provide by letting us know we are not alone!

>

> Take care and keep sharing!

>

> Gaby.

>

>

>

>