New to the group

[Guest guest]

Hi Karissa,

I just wanted to say Hi and welcome to the group. I'm sorry to hear

your function dropped so quickly and that you are having difficulty with the

dialysis. I'm not at the dialysis point yet so I'm unable to answer any of

your questions. I am happy you found this group and I'm sure others here

will be able to provide you with some ideas to help cope.

Welcome again,

Amy

[Guest guest]

Hi Karissa,

I just wanted to say Hi and welcome to the group. I'm sorry to hear

your function dropped so quickly and that you are having difficulty with the

dialysis. I'm not at the dialysis point yet so I'm unable to answer any of

your questions. I am happy you found this group and I'm sure others here

will be able to provide you with some ideas to help cope.

Welcome again,

Amy

[Guest guest]

Hi Karissa,

I just wanted to say Hi and welcome to the group. I'm sorry to hear

your function dropped so quickly and that you are having difficulty with the

dialysis. I'm not at the dialysis point yet so I'm unable to answer any of

your questions. I am happy you found this group and I'm sure others here

will be able to provide you with some ideas to help cope.

Welcome again,

Amy

[Guest guest]

Hi Karissa.

I'm not an expert on dialysis, as I said, just a patient...

But, when I get to dialysis, I'm usually about 1 to 1.5 kilos over my dry

weight, depending on how much salt I ate (it's the sodium that makes you

drink and retain more water). My BP is sometimes as high as 155/90 when I

get there, but often it's more in the 140/80-something range. During

dialysis, it flirts with 110/70, sometimes dipping a little below that, but

it seems to be most happy at around 120/70-ish. At the end, after I'm off

but still sitting, it's usually in the area of 120/80, and when I stand up,

it often goes up to around 140/90, sometimes a bit more (after I'm

disconnected, the nurse takes a sitting and then a standing BP, every time).

Now, if I had numbers like the ones you just gave, down only to

150-160/80-85 during treatment, I'm pretty sure my doctor would be thinking

my dry weight should be lower (ie. they should be taking off more fluid

during the treatment).

Most blood pressure problems on hemodialysis are related to dry weight. When

you start dialysis the first time, the target dry weight is part of the

prescription a nephrologist has written for the nurses and/or techs to

follow. This " dry weight " is not arrived at as scientifically as it seems.

It's really just a best guess based on body weight and a few other factors,

and it can be wrong. It almost invariably needs to be adjusted up or down

afterwards, and also if you happen to gain or lose real weight (as opposed

to just fluid weight).

You really shouldn't be getting things like headaches or cramps all the

time. Occasionally, sure, but not all the time. If you do, there is either

something about your dialysis prescription that isn't optimal for you, or

there's something wrong with your diet. Sometimes, it seems to take a bit of

constant complaining to get the nephrologist to look at changing something.

It shouldn't be that way, but that's how it is sometimes.

When I first started last year, I had a persistent problem with tingling

with about an hour left in the treatment and afterwards. At first, they

didn't know what that was, and they didn't seem to care very much. It was a

month and a half before a rotation of nephrologists happened, and the new

one figured it out right away. The normal amount of bicarbonate in the

dialysate was too much for me, even though it's fine for 99.9% of patients.

The next treatment, it was lowered from 36 to 32, and I haven't had the

problem since. Another problem I had was with itching. It wasn't horrible

itching, but it was kind of uncomfortable. I mentioned it a few times, and

they said that if I was allergic to the actual dialyzer, I would have more

than just itching. But eventually, another nephrologist said, " Oh, well, you

might be allergic to the dialyzer " . For the next treatment, he changed my

prescription to a special dialyzer that is not sterilised with a solvent.

Problem solved. So it just goes to show that you have to be persistent

sometimes, and patient too.

I know what I said before, and it's still valid, but looking at those

numbers, it sure seems like maybe they aren't taking enough fluid off you.

Now, maybe there's a reason for that I don't know about.

Pierre

Re: New to the group

> Hi Pierre and all,

>

> Thank you for your suggestions...

>

> I will try to talk to my doctors about the sympathetic nervous system and

the meds that you mentioned.

>

> At this point, I am really worried about the other affects of bp (such as

heart attack, stroke.etc). Even during the treatment, the lowest the bp goes

down to is in the range of 150-160/80-85. And on the days when I dont have

dialysis, it stays around this range or a little higher (sometimes around

170/110). But, it's really surprising how it shoots up that high after

dialysis.

>

> I will keep you all posted.

>

> Thanks again,

> Karrissa

>

>

[Guest guest]

Hi Karissa.

I'm not an expert on dialysis, as I said, just a patient...

But, when I get to dialysis, I'm usually about 1 to 1.5 kilos over my dry

weight, depending on how much salt I ate (it's the sodium that makes you

drink and retain more water). My BP is sometimes as high as 155/90 when I

get there, but often it's more in the 140/80-something range. During

dialysis, it flirts with 110/70, sometimes dipping a little below that, but

it seems to be most happy at around 120/70-ish. At the end, after I'm off

but still sitting, it's usually in the area of 120/80, and when I stand up,

it often goes up to around 140/90, sometimes a bit more (after I'm

disconnected, the nurse takes a sitting and then a standing BP, every time).

Now, if I had numbers like the ones you just gave, down only to

150-160/80-85 during treatment, I'm pretty sure my doctor would be thinking

my dry weight should be lower (ie. they should be taking off more fluid

during the treatment).

Most blood pressure problems on hemodialysis are related to dry weight. When

you start dialysis the first time, the target dry weight is part of the

prescription a nephrologist has written for the nurses and/or techs to

follow. This " dry weight " is not arrived at as scientifically as it seems.

It's really just a best guess based on body weight and a few other factors,

and it can be wrong. It almost invariably needs to be adjusted up or down

afterwards, and also if you happen to gain or lose real weight (as opposed

to just fluid weight).

You really shouldn't be getting things like headaches or cramps all the

time. Occasionally, sure, but not all the time. If you do, there is either

something about your dialysis prescription that isn't optimal for you, or

there's something wrong with your diet. Sometimes, it seems to take a bit of

constant complaining to get the nephrologist to look at changing something.

It shouldn't be that way, but that's how it is sometimes.

When I first started last year, I had a persistent problem with tingling

with about an hour left in the treatment and afterwards. At first, they

didn't know what that was, and they didn't seem to care very much. It was a

month and a half before a rotation of nephrologists happened, and the new

one figured it out right away. The normal amount of bicarbonate in the

dialysate was too much for me, even though it's fine for 99.9% of patients.

The next treatment, it was lowered from 36 to 32, and I haven't had the

problem since. Another problem I had was with itching. It wasn't horrible

itching, but it was kind of uncomfortable. I mentioned it a few times, and

they said that if I was allergic to the actual dialyzer, I would have more

than just itching. But eventually, another nephrologist said, " Oh, well, you

might be allergic to the dialyzer " . For the next treatment, he changed my

prescription to a special dialyzer that is not sterilised with a solvent.

Problem solved. So it just goes to show that you have to be persistent

sometimes, and patient too.

I know what I said before, and it's still valid, but looking at those

numbers, it sure seems like maybe they aren't taking enough fluid off you.

Now, maybe there's a reason for that I don't know about.

Pierre

Re: New to the group

> Hi Pierre and all,

>

> Thank you for your suggestions...

>

> I will try to talk to my doctors about the sympathetic nervous system and

the meds that you mentioned.

>

> At this point, I am really worried about the other affects of bp (such as

heart attack, stroke.etc). Even during the treatment, the lowest the bp goes

down to is in the range of 150-160/80-85. And on the days when I dont have

dialysis, it stays around this range or a little higher (sometimes around

170/110). But, it's really surprising how it shoots up that high after

dialysis.

>

> I will keep you all posted.

>

> Thanks again,

> Karrissa

>

>

[Guest guest]

Hi Karissa.

I'm not an expert on dialysis, as I said, just a patient...

But, when I get to dialysis, I'm usually about 1 to 1.5 kilos over my dry

weight, depending on how much salt I ate (it's the sodium that makes you

drink and retain more water). My BP is sometimes as high as 155/90 when I

get there, but often it's more in the 140/80-something range. During

dialysis, it flirts with 110/70, sometimes dipping a little below that, but

it seems to be most happy at around 120/70-ish. At the end, after I'm off

but still sitting, it's usually in the area of 120/80, and when I stand up,

it often goes up to around 140/90, sometimes a bit more (after I'm

disconnected, the nurse takes a sitting and then a standing BP, every time).

Now, if I had numbers like the ones you just gave, down only to

150-160/80-85 during treatment, I'm pretty sure my doctor would be thinking

my dry weight should be lower (ie. they should be taking off more fluid

during the treatment).

Most blood pressure problems on hemodialysis are related to dry weight. When

you start dialysis the first time, the target dry weight is part of the

prescription a nephrologist has written for the nurses and/or techs to

follow. This " dry weight " is not arrived at as scientifically as it seems.

It's really just a best guess based on body weight and a few other factors,

and it can be wrong. It almost invariably needs to be adjusted up or down

afterwards, and also if you happen to gain or lose real weight (as opposed

to just fluid weight).

You really shouldn't be getting things like headaches or cramps all the

time. Occasionally, sure, but not all the time. If you do, there is either

something about your dialysis prescription that isn't optimal for you, or

there's something wrong with your diet. Sometimes, it seems to take a bit of

constant complaining to get the nephrologist to look at changing something.

It shouldn't be that way, but that's how it is sometimes.

When I first started last year, I had a persistent problem with tingling

with about an hour left in the treatment and afterwards. At first, they

didn't know what that was, and they didn't seem to care very much. It was a

month and a half before a rotation of nephrologists happened, and the new

one figured it out right away. The normal amount of bicarbonate in the

dialysate was too much for me, even though it's fine for 99.9% of patients.

The next treatment, it was lowered from 36 to 32, and I haven't had the

problem since. Another problem I had was with itching. It wasn't horrible

itching, but it was kind of uncomfortable. I mentioned it a few times, and

they said that if I was allergic to the actual dialyzer, I would have more

than just itching. But eventually, another nephrologist said, " Oh, well, you

might be allergic to the dialyzer " . For the next treatment, he changed my

prescription to a special dialyzer that is not sterilised with a solvent.

Problem solved. So it just goes to show that you have to be persistent

sometimes, and patient too.

I know what I said before, and it's still valid, but looking at those

numbers, it sure seems like maybe they aren't taking enough fluid off you.

Now, maybe there's a reason for that I don't know about.

Pierre

Re: New to the group

> Hi Pierre and all,

>

> Thank you for your suggestions...

>

> I will try to talk to my doctors about the sympathetic nervous system and

the meds that you mentioned.

>

> At this point, I am really worried about the other affects of bp (such as

heart attack, stroke.etc). Even during the treatment, the lowest the bp goes

down to is in the range of 150-160/80-85. And on the days when I dont have

dialysis, it stays around this range or a little higher (sometimes around

170/110). But, it's really surprising how it shoots up that high after

dialysis.

>

> I will keep you all posted.

>

> Thanks again,

> Karrissa

>

>

[Guest guest]

Pierre, that is such a keeper of a post. Thank you for taking the time to

answer Karissa. I've squirreled this one away.

Cy

Re: New to the group

>

>

> > Hi Pierre and all,

> >

> > Thank you for your suggestions...

> >

> > I will try to talk to my doctors about the sympathetic nervous system

and

> the meds that you mentioned.

> >

> > At this point, I am really worried about the other affects of bp (such

as

> heart attack, stroke.etc). Even during the treatment, the lowest the bp

goes

> down to is in the range of 150-160/80-85. And on the days when I dont have

> dialysis, it stays around this range or a little higher (sometimes around

> 170/110). But, it's really surprising how it shoots up that high after

> dialysis.

> >

> > I will keep you all posted.

> >

> > Thanks again,

> > Karrissa

> >

> >

>

>

>

>

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

> home page:

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

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

[Guest guest]

Pierre, that is such a keeper of a post. Thank you for taking the time to

answer Karissa. I've squirreled this one away.

Cy

Re: New to the group

>

>

> > Hi Pierre and all,

> >

> > Thank you for your suggestions...

> >

> > I will try to talk to my doctors about the sympathetic nervous system

and

> the meds that you mentioned.

> >

> > At this point, I am really worried about the other affects of bp (such

as

> heart attack, stroke.etc). Even during the treatment, the lowest the bp

goes

> down to is in the range of 150-160/80-85. And on the days when I dont have

> dialysis, it stays around this range or a little higher (sometimes around

> 170/110). But, it's really surprising how it shoots up that high after

> dialysis.

> >

> > I will keep you all posted.

> >

> > Thanks again,

> > Karrissa

> >

> >

>

>

>

>

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

> home page:

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

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

[Guest guest]

Pierre, that is such a keeper of a post. Thank you for taking the time to

answer Karissa. I've squirreled this one away.

Cy

Re: New to the group

>

>

> > Hi Pierre and all,

> >

> > Thank you for your suggestions...

> >

> > I will try to talk to my doctors about the sympathetic nervous system

and

> the meds that you mentioned.

> >

> > At this point, I am really worried about the other affects of bp (such

as

> heart attack, stroke.etc). Even during the treatment, the lowest the bp

goes

> down to is in the range of 150-160/80-85. And on the days when I dont have

> dialysis, it stays around this range or a little higher (sometimes around

> 170/110). But, it's really surprising how it shoots up that high after

> dialysis.

> >

> > I will keep you all posted.

> >

> > Thanks again,

> > Karrissa

> >

> >

>

>

>

>

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

> home page:

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

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

[Guest guest]

Thanks Cy. I hope you never need to refer to it though.

Pierre

Re: New to the group

>

>

> > Hi Karissa.

> >

> > I'm not an expert on dialysis, as I said, just a patient...

> >

> > But, when I get to dialysis, I'm usually about 1 to 1.5 kilos over my

dry

> > weight, depending on how much salt I ate (it's the sodium that makes you

> > drink and retain more water). My BP is sometimes as high as 155/90 when

I

> > get there, but often it's more in the 140/80-something range. During

> > dialysis, it flirts with 110/70, sometimes dipping a little below that,

> but

> > it seems to be most happy at around 120/70-ish. At the end, after I'm

off

> > but still sitting, it's usually in the area of 120/80, and when I stand

> up,

> > it often goes up to around 140/90, sometimes a bit more (after I'm

> > disconnected, the nurse takes a sitting and then a standing BP, every

> time).

> >

> > Now, if I had numbers like the ones you just gave, down only to

> > 150-160/80-85 during treatment, I'm pretty sure my doctor would be

> thinking

> > my dry weight should be lower (ie. they should be taking off more fluid

> > during the treatment).

> >

> > Most blood pressure problems on hemodialysis are related to dry weight.

> When

> > you start dialysis the first time, the target dry weight is part of the

> > prescription a nephrologist has written for the nurses and/or techs to

> > follow. This " dry weight " is not arrived at as scientifically as it

seems.

> > It's really just a best guess based on body weight and a few other

> factors,

> > and it can be wrong. It almost invariably needs to be adjusted up or

down

> > afterwards, and also if you happen to gain or lose real weight (as

opposed

> > to just fluid weight).

> >

> > You really shouldn't be getting things like headaches or cramps all the

> > time. Occasionally, sure, but not all the time. If you do, there is

either

> > something about your dialysis prescription that isn't optimal for you,

or

> > there's something wrong with your diet. Sometimes, it seems to take a

bit

> of

> > constant complaining to get the nephrologist to look at changing

> something.

> > It shouldn't be that way, but that's how it is sometimes.

> >

> > When I first started last year, I had a persistent problem with tingling

> > with about an hour left in the treatment and afterwards. At first, they

> > didn't know what that was, and they didn't seem to care very much. It

was

> a

> > month and a half before a rotation of nephrologists happened, and the

new

> > one figured it out right away. The normal amount of bicarbonate in the

> > dialysate was too much for me, even though it's fine for 99.9% of

> patients.

> > The next treatment, it was lowered from 36 to 32, and I haven't had the

> > problem since. Another problem I had was with itching. It wasn't

horrible

> > itching, but it was kind of uncomfortable. I mentioned it a few times,

and

> > they said that if I was allergic to the actual dialyzer, I would have

more

> > than just itching. But eventually, another nephrologist said, " Oh, well,

> you

> > might be allergic to the dialyzer " . For the next treatment, he changed

my

> > prescription to a special dialyzer that is not sterilised with a

solvent.

> > Problem solved. So it just goes to show that you have to be persistent

> > sometimes, and patient too.

> >

> > I know what I said before, and it's still valid, but looking at those

> > numbers, it sure seems like maybe they aren't taking enough fluid off

you.

> > Now, maybe there's a reason for that I don't know about.

> >

> > Pierre

> >

[Guest guest]

Thanks Cy. I hope you never need to refer to it though.

Pierre

Re: New to the group

>

>

> > Hi Karissa.

> >

> > I'm not an expert on dialysis, as I said, just a patient...

> >

> > But, when I get to dialysis, I'm usually about 1 to 1.5 kilos over my

dry

> > weight, depending on how much salt I ate (it's the sodium that makes you

> > drink and retain more water). My BP is sometimes as high as 155/90 when

I

> > get there, but often it's more in the 140/80-something range. During

> > dialysis, it flirts with 110/70, sometimes dipping a little below that,

> but

> > it seems to be most happy at around 120/70-ish. At the end, after I'm

off

> > but still sitting, it's usually in the area of 120/80, and when I stand

> up,

> > it often goes up to around 140/90, sometimes a bit more (after I'm

> > disconnected, the nurse takes a sitting and then a standing BP, every

> time).

> >

> > Now, if I had numbers like the ones you just gave, down only to

> > 150-160/80-85 during treatment, I'm pretty sure my doctor would be

> thinking

> > my dry weight should be lower (ie. they should be taking off more fluid

> > during the treatment).

> >

> > Most blood pressure problems on hemodialysis are related to dry weight.

> When

> > you start dialysis the first time, the target dry weight is part of the

> > prescription a nephrologist has written for the nurses and/or techs to

> > follow. This " dry weight " is not arrived at as scientifically as it

seems.

> > It's really just a best guess based on body weight and a few other

> factors,

> > and it can be wrong. It almost invariably needs to be adjusted up or

down

> > afterwards, and also if you happen to gain or lose real weight (as

opposed

> > to just fluid weight).

> >

> > You really shouldn't be getting things like headaches or cramps all the

> > time. Occasionally, sure, but not all the time. If you do, there is

either

> > something about your dialysis prescription that isn't optimal for you,

or

> > there's something wrong with your diet. Sometimes, it seems to take a

bit

> of

> > constant complaining to get the nephrologist to look at changing

> something.

> > It shouldn't be that way, but that's how it is sometimes.

> >

> > When I first started last year, I had a persistent problem with tingling

> > with about an hour left in the treatment and afterwards. At first, they

> > didn't know what that was, and they didn't seem to care very much. It

was

> a

> > month and a half before a rotation of nephrologists happened, and the

new

> > one figured it out right away. The normal amount of bicarbonate in the

> > dialysate was too much for me, even though it's fine for 99.9% of

> patients.

> > The next treatment, it was lowered from 36 to 32, and I haven't had the

> > problem since. Another problem I had was with itching. It wasn't

horrible

> > itching, but it was kind of uncomfortable. I mentioned it a few times,

and

> > they said that if I was allergic to the actual dialyzer, I would have

more

> > than just itching. But eventually, another nephrologist said, " Oh, well,

> you

> > might be allergic to the dialyzer " . For the next treatment, he changed

my

> > prescription to a special dialyzer that is not sterilised with a

solvent.

> > Problem solved. So it just goes to show that you have to be persistent

> > sometimes, and patient too.

> >

> > I know what I said before, and it's still valid, but looking at those

> > numbers, it sure seems like maybe they aren't taking enough fluid off

you.

> > Now, maybe there's a reason for that I don't know about.

> >

> > Pierre

> >

[Guest guest]

Hi Ellen,

I'm new too. My doctor just told me that he thinks I have IgA Nephropathy

too. I have had microscopic hematuria for a year and a half and I've had

macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a

neph for the first time on May 18th. I felt complete despair and panic, but I'm

beginning to calm down now. I've been reading a lot of the old e-mails and

posts that are part of this online support group and they have been really

helpful just to understand this disease and what to expect. I don't know what

I

would have done without them.

Cheryl

[Guest guest]

Hi Ellen,

I'm new too. My doctor just told me that he thinks I have IgA Nephropathy

too. I have had microscopic hematuria for a year and a half and I've had

macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a

neph for the first time on May 18th. I felt complete despair and panic, but I'm

beginning to calm down now. I've been reading a lot of the old e-mails and

posts that are part of this online support group and they have been really

helpful just to understand this disease and what to expect. I don't know what

I

would have done without them.

Cheryl

[Guest guest]

Cheryl,

Welcome. You've only skimmed the tip of the iceberg. The people

here are excellent sounding boards. In no time you feel as if they

are part of your extendedd family. I know I do.

I am glad you found us and our posts have helped alleviate some of

your dispair. I know I speak for the majority of us here when I say

we will offer as much knowledge and support as we can. We can't

offer any real medical advise, just our own personal experiences

which can make discussing your condition and alternatives with

your doctors a whole lot easier.

Again Welcome,

Tony C and Schmeagle

> Hi Ellen,

> I'm new too. My doctor just told me that he thinks I have IgA

Nephropathy

> too. I have had microscopic hematuria for a year and a half and

I've had

> macroscopic with a respiratory infection. My creatinine is 1.0 and

I'm seeing a

> neph for the first time on May 18th. I felt complete despair and

panic, but I'm

> beginning to calm down now. I've been reading a lot of the old e-

mails and

> posts that are part of this online support group and they have been

really

> helpful just to understand this disease and what to expect. I

don't know what I

> would have done without them.

> Cheryl

>

>

>

[Guest guest]

Cheryl,

Welcome. You've only skimmed the tip of the iceberg. The people

here are excellent sounding boards. In no time you feel as if they

are part of your extendedd family. I know I do.

I am glad you found us and our posts have helped alleviate some of

your dispair. I know I speak for the majority of us here when I say

we will offer as much knowledge and support as we can. We can't

offer any real medical advise, just our own personal experiences

which can make discussing your condition and alternatives with

your doctors a whole lot easier.

Again Welcome,

Tony C and Schmeagle

> Hi Ellen,

> I'm new too. My doctor just told me that he thinks I have IgA

Nephropathy

> too. I have had microscopic hematuria for a year and a half and

I've had

> macroscopic with a respiratory infection. My creatinine is 1.0 and

I'm seeing a

> neph for the first time on May 18th. I felt complete despair and

panic, but I'm

> beginning to calm down now. I've been reading a lot of the old e-

mails and

> posts that are part of this online support group and they have been

really

> helpful just to understand this disease and what to expect. I

don't know what I

> would have done without them.

> Cheryl

>

>

>

[Guest guest]

Cheryl,

Welcome. You've only skimmed the tip of the iceberg. The people

here are excellent sounding boards. In no time you feel as if they

are part of your extendedd family. I know I do.

I am glad you found us and our posts have helped alleviate some of

your dispair. I know I speak for the majority of us here when I say

we will offer as much knowledge and support as we can. We can't

offer any real medical advise, just our own personal experiences

which can make discussing your condition and alternatives with

your doctors a whole lot easier.

Again Welcome,

Tony C and Schmeagle

> Hi Ellen,

> I'm new too. My doctor just told me that he thinks I have IgA

Nephropathy

> too. I have had microscopic hematuria for a year and a half and

I've had

> macroscopic with a respiratory infection. My creatinine is 1.0 and

I'm seeing a

> neph for the first time on May 18th. I felt complete despair and

panic, but I'm

> beginning to calm down now. I've been reading a lot of the old e-

mails and

> posts that are part of this online support group and they have been

really

> helpful just to understand this disease and what to expect. I

don't know what I

> would have done without them.

> Cheryl

>

>

>

[Guest guest]

Hi Cheryl,

I wanted to welcome you too! I won't repeat everything I just wrote to

Ellen, but I hope some of that will be helpful to you as well.

Your creatinine is only very slightly elevated. Please let us know what your

Nephrologist says at your first visit next week. Don't be surprised if you

are prescribed an Ace inhibitor regardless of whether your blood pressure is

elevated or not. That is a fairly standard practice for IgAN because Ace

inhibitors are known to have a renal protective nature, and also keeping your

blood

pressure in check is very important in preserving kidney function.

Welcome again.

[Guest guest]

Hi Cheryl,

I wanted to welcome you too! I won't repeat everything I just wrote to

Ellen, but I hope some of that will be helpful to you as well.

Your creatinine is only very slightly elevated. Please let us know what your

Nephrologist says at your first visit next week. Don't be surprised if you

are prescribed an Ace inhibitor regardless of whether your blood pressure is

elevated or not. That is a fairly standard practice for IgAN because Ace

inhibitors are known to have a renal protective nature, and also keeping your

blood

pressure in check is very important in preserving kidney function.

Welcome again.

[Guest guest]

Hi Cheryl,

Welcome to the group. I'm happy to hear your fears are being calmed by

our old postings. I know that feeling of despair and panic, I lived it for

a few months after my diagnosis. This group was a wonderful source of calm

in the midst of that storm, and they continue to be a source of strength for

me on my down days.

Let us know how your neph appointment goes. I hope they can get you some

more concrete answers.

Amy

Re: New to the group

> Hi Ellen,

> I'm new too. My doctor just told me that he thinks I have IgA Nephropathy

> too. I have had microscopic hematuria for a year and a half and I've had

> macroscopic with a respiratory infection. My creatinine is 1.0 and I'm

seeing a

> neph for the first time on May 18th. I felt complete despair and panic,

but I'm

> beginning to calm down now. I've been reading a lot of the old e-mails

and

> posts that are part of this online support group and they have been really

> helpful just to understand this disease and what to expect. I don't know

what I

> would have done without them.

> Cheryl

>

>

>

[Guest guest]

Hi Cheryl,

Welcome to the group. I'm happy to hear your fears are being calmed by

our old postings. I know that feeling of despair and panic, I lived it for

a few months after my diagnosis. This group was a wonderful source of calm

in the midst of that storm, and they continue to be a source of strength for

me on my down days.

Let us know how your neph appointment goes. I hope they can get you some

more concrete answers.

Amy

Re: New to the group

> Hi Ellen,

> I'm new too. My doctor just told me that he thinks I have IgA Nephropathy

> too. I have had microscopic hematuria for a year and a half and I've had

> macroscopic with a respiratory infection. My creatinine is 1.0 and I'm

seeing a

> neph for the first time on May 18th. I felt complete despair and panic,

but I'm

> beginning to calm down now. I've been reading a lot of the old e-mails

and

> posts that are part of this online support group and they have been really

> helpful just to understand this disease and what to expect. I don't know

what I

> would have done without them.

> Cheryl

>

>

>

[Guest guest]

Hi Cheryl,

Welcome to the group. I'm happy to hear your fears are being calmed by

our old postings. I know that feeling of despair and panic, I lived it for

a few months after my diagnosis. This group was a wonderful source of calm

in the midst of that storm, and they continue to be a source of strength for

me on my down days.

Let us know how your neph appointment goes. I hope they can get you some

more concrete answers.

Amy

Re: New to the group

> Hi Ellen,

> I'm new too. My doctor just told me that he thinks I have IgA Nephropathy

> too. I have had microscopic hematuria for a year and a half and I've had

> macroscopic with a respiratory infection. My creatinine is 1.0 and I'm

seeing a

> neph for the first time on May 18th. I felt complete despair and panic,

but I'm

> beginning to calm down now. I've been reading a lot of the old e-mails

and

> posts that are part of this online support group and they have been really

> helpful just to understand this disease and what to expect. I don't know

what I

> would have done without them.

> Cheryl

>

>

>

[Guest guest]

> Hi Ellen,

> I'm new too. My doctor just told me that he thinks I have IgA

Nephropathy

> too. I have had microscopic hematuria for a year and a half and

I've had

> macroscopic with a respiratory infection. My creatinine is 1.0

and I'm seeing a

> neph for the first time on May 18th. I felt complete despair and

panic, but I'm

> beginning to calm down now. I've been reading a lot of the old e-

mails and

> posts that are part of this online support group and they have

been really

> helpful just to understand this disease and what to expect. I

don't know what I

> would have done without them.

> Cheryl

>

> Hi Ellen, so sorry to hear that you need to join our group. One

question I have is how can they diagnoise you without a biospy.

Sounds like it is a pure guess on thier part. Most neph. want a

biospy done to get an exact name of the disease. I wish you the

best. Yes it is a terrifying disease and it is alot to learn about.

My suggestion is always ask questions and always get copies of your

medical records. Depression has been a big part of my life since

discovering but most days when I feel good I try to keep my heasd up

and be cheerful and be happy for that day alone. What is so crazy

about this disease everybody says is that you look like you are fine

but are not. There has been alot of research the past few years on

IGan so hopefully we will get good results. Good Luck Billie

>

[Guest guest]

> Hi Ellen,

> I'm new too. My doctor just told me that he thinks I have IgA

Nephropathy

> too. I have had microscopic hematuria for a year and a half and

I've had

> macroscopic with a respiratory infection. My creatinine is 1.0

and I'm seeing a

> neph for the first time on May 18th. I felt complete despair and

panic, but I'm

> beginning to calm down now. I've been reading a lot of the old e-

mails and

> posts that are part of this online support group and they have

been really

> helpful just to understand this disease and what to expect. I

don't know what I

> would have done without them.

> Cheryl

>

> Hi Ellen, so sorry to hear that you need to join our group. One

question I have is how can they diagnoise you without a biospy.

Sounds like it is a pure guess on thier part. Most neph. want a

biospy done to get an exact name of the disease. I wish you the

best. Yes it is a terrifying disease and it is alot to learn about.

My suggestion is always ask questions and always get copies of your

medical records. Depression has been a big part of my life since

discovering but most days when I feel good I try to keep my heasd up

and be cheerful and be happy for that day alone. What is so crazy

about this disease everybody says is that you look like you are fine

but are not. There has been alot of research the past few years on

IGan so hopefully we will get good results. Good Luck Billie

>

[Guest guest]

> Hi Ellen,

> I'm new too. My doctor just told me that he thinks I have IgA

Nephropathy

> too. I have had microscopic hematuria for a year and a half and

I've had

> macroscopic with a respiratory infection. My creatinine is 1.0

and I'm seeing a

> neph for the first time on May 18th. I felt complete despair and

panic, but I'm

> beginning to calm down now. I've been reading a lot of the old e-

mails and

> posts that are part of this online support group and they have

been really

> helpful just to understand this disease and what to expect. I

don't know what I

> would have done without them.

> Cheryl

>

> Hi Ellen, so sorry to hear that you need to join our group. One

question I have is how can they diagnoise you without a biospy.

Sounds like it is a pure guess on thier part. Most neph. want a

biospy done to get an exact name of the disease. I wish you the

best. Yes it is a terrifying disease and it is alot to learn about.

My suggestion is always ask questions and always get copies of your

medical records. Depression has been a big part of my life since

discovering but most days when I feel good I try to keep my heasd up

and be cheerful and be happy for that day alone. What is so crazy

about this disease everybody says is that you look like you are fine

but are not. There has been alot of research the past few years on

IGan so hopefully we will get good results. Good Luck Billie

>

[Guest guest]

Hi ,

Let me start with the most troublesome first. You have only been on

injections a short while, and it does take time to get your levels up. If my

memory

serves me correctly (which it often doesn't I must admit) your hematocrit was

extremely low.

I can share with you that when mine drops, as it currently has down to 10, I

have a much harder time with full-time work myself. I feel much much better

when I am around 13. It may be that your levels are still just too low for you

to feel the positive impact yet, but be patient because it does take a while

to built up.

Also, you have had a great deal of stress lately with the death of your

grandmother, loss of your job, starting a new job, a house full of company, and

weren't you the one painting and working on your house too? That could be

compounded by the fact that it really has not been that long since you were

diagnosed, and it does take time to grieve through all that. Stress has its way

of

further draining you. I would think you should start to begin feeling more

energy, and therefore being able to concentrate more easily within a few more

weeks

when you are getting the full impact of your injections.

On the bananas, I assume your Nephrologist has checked your potassium levels

and you do not tend to run high as many of us do, but if not, be careful not

to overdo it on the bananas.

The lower back pain is commonly called flank pain, and some of us are

constantly plagued with it while others rarely get it. For some, it is a

constant

and severe pain, and for others more comparable to a dull headache that is

irritating and just won't go away, but is mainly in the background. Be careful

with over the counter pain meds. Try to avoid them if you can, but if not, most

Neph's recommend Tylenol, but definitely not Ibuprofen products which are

known to be hard on the kidneys.

I am not a doctor, and not qualified to give any medical advise as you know,

but I hope some of this is somewhat encouraging to you.

Try to allow yourself to get enough rest in the meantime .

I hope you feel better soon.