Re: No Energy / Irritable/ Relationship

[Guest guest]

Hi Emili,

First let me say that I am sorry your boyfriend has been diagnosed with IgAN.

Do you know what his levels are? Specifically, what are his hemoglobin and

hematocrit? With anemia, there are no outward visible signs that you are

anemic, and being cold also does not necessarily mean he is anemic either. The

only way to tell if a person is anemic is by checking those two blood tests. It

may be that he is close, but not yet quite low enough because there are some

standards for when you get approved for Epogen injections. Many people make

it all the way up to dialysis and even to transplant without getting anemic

though, so it may be something else going on.

Has he been recently diagnosed? I was wondering if it is possible that he is

experiencing some depression. That is not uncommon as you are working

through the stages of grief leading up to acceptance. The highly irritable and

short tempered are not symptomatic of either IgAN or anemia, which is one of the

reasons I ask. Anger is one of the stages of grieving the loss of good health

and it is a possibility that is what he is experiencing.

The symptom you describe that is typical of IgAN is fatigue. Many of us

suffer from that. It really helps the energy level to get some exercise. I am

at

20% kidney function, but still exercise for one hour 4 days a week, and that

is probably the only thing that keeps me going. I completely understand how

hard it is to get going, especially if he is anemic, but it really helps both

emotionally and physically if you can encourage him to maybe go for a walk with

you after dinner and encourage him to talk.

I know it is hard on our significant others, so please know that there are

many spouses here too that understand how stressful this is on you as well, and

we are here to support both of you.

I hope some of this helps.

[Guest guest]

Hi Emili,

First let me say that I am sorry your boyfriend has been diagnosed with IgAN.

Do you know what his levels are? Specifically, what are his hemoglobin and

hematocrit? With anemia, there are no outward visible signs that you are

anemic, and being cold also does not necessarily mean he is anemic either. The

only way to tell if a person is anemic is by checking those two blood tests. It

may be that he is close, but not yet quite low enough because there are some

standards for when you get approved for Epogen injections. Many people make

it all the way up to dialysis and even to transplant without getting anemic

though, so it may be something else going on.

Has he been recently diagnosed? I was wondering if it is possible that he is

experiencing some depression. That is not uncommon as you are working

through the stages of grief leading up to acceptance. The highly irritable and

short tempered are not symptomatic of either IgAN or anemia, which is one of the

reasons I ask. Anger is one of the stages of grieving the loss of good health

and it is a possibility that is what he is experiencing.

The symptom you describe that is typical of IgAN is fatigue. Many of us

suffer from that. It really helps the energy level to get some exercise. I am

at

20% kidney function, but still exercise for one hour 4 days a week, and that

is probably the only thing that keeps me going. I completely understand how

hard it is to get going, especially if he is anemic, but it really helps both

emotionally and physically if you can encourage him to maybe go for a walk with

you after dinner and encourage him to talk.

I know it is hard on our significant others, so please know that there are

many spouses here too that understand how stressful this is on you as well, and

we are here to support both of you.

I hope some of this helps.

[Guest guest]

Well, unfortunately, patients have to reach a certain level of hemoglobin

before most private and public health plans will cover EPO. Also, it's not

like EPO can completely reverse the symptoms of advanced renal

insufficiency. Even with EPO, people still experience symptoms such as you

describe. The lack of energy and tiredness is not just because of anemia.

It's also possible that depression may play a bit of a role, but, I have to

say, that I was wiped out even after doing very little. That's just the way

it is with kidney failure.

Pierre

No Energy / Irritable/ Relationship

> Insurance will not cover costly Epo injections until my boyfriends

> level drops. He is visibly anemic, body cold to the touch, on alot of

> meds including several blood pressure meds, close to pre-dialysis.

>

> PROBLEM-after 8 hours at a very stress-fee job he has no energy,is

> highly irritable, very short tempered, & has no desire to do

> anthing but sit. No activities.

>

> QUESTION-He admits he has changed and advises me he will not be

> himself (temper and activity wise)until he gets a transplant. WHAT

> CAN BE DONE?

>

>

[Guest guest]

Well, unfortunately, patients have to reach a certain level of hemoglobin

before most private and public health plans will cover EPO. Also, it's not

like EPO can completely reverse the symptoms of advanced renal

insufficiency. Even with EPO, people still experience symptoms such as you

describe. The lack of energy and tiredness is not just because of anemia.

It's also possible that depression may play a bit of a role, but, I have to

say, that I was wiped out even after doing very little. That's just the way

it is with kidney failure.

Pierre

No Energy / Irritable/ Relationship

> Insurance will not cover costly Epo injections until my boyfriends

> level drops. He is visibly anemic, body cold to the touch, on alot of

> meds including several blood pressure meds, close to pre-dialysis.

>

> PROBLEM-after 8 hours at a very stress-fee job he has no energy,is

> highly irritable, very short tempered, & has no desire to do

> anthing but sit. No activities.

>

> QUESTION-He admits he has changed and advises me he will not be

> himself (temper and activity wise)until he gets a transplant. WHAT

> CAN BE DONE?

>

>

[Guest guest]

I think that people who have been around kidney failure will recognize

irritability as a symptom. But the person who has it usually is not

him/herself aware of it, and I agree, it shouldn't be deliberately used as

an excuse to be irritable and obnoxious. If it's enough to be a problem, it

might be worth discussing this with the nephrologist. How far away is he

from dialysis/transplant? Any good renal social worker available to you

because he is close to ESRD? I mentioned depression in my previous post in

this thread, and I think mentioned it as well. Depression is common

with chronic kidney disease, and maybe even moreso with kidney disease as

opposed to other diseases, simply because the toxins that build up to higher

levels in the blood because of the kidney failure actually do affect the

brain and thinking. So, in a way, there's an actual physical reason for it.

But, depression is treated in kidney patients the same as in anyone else,

and, in addition, some counseling to make the patient aware of the anger,

irritability or whatever can be useful. What services are available to

advanced kidney patients varies from one area to another, but where I live,

the social worker is part of the treatment team for any patient who is under

about 30% kidney function, along with the renal dietician, the renal nurse

and the nephrologist. These social workers deal with family things like that

all the time - but someone has to ask. In the end though, patience might be

a virtue, as this should improve after he starts dialysis or gets a

transplant.

....but you can't get a transplant or start dialysis until you reach a

certain level of kidney failure, plus, as I said before, you also usually

don't get EPO until a certain level of anemia is reached (and besides, EPO

only helps with fatigue and shortness of breath that is caused by the anemia

itself).

Pierre

[Guest guest]

How close is he to transplant/dialysis? I know for me my irritability comes

out of a combination of depression and frustration. It's extremely

frustrating when you are so tired you just can't do things that you want to

do or used to do. It has taken me time to realize that it is o.k. for it to

take twice as long to finish a project, the point is that I do finish it.

My frustration shines thru quite frequently though and it comes off at

irritability even though I try very hard to keep my temper in check. I even

work out of my home and don't have to work if I don't feel well due to my

husbands income. However I end up feeling like I'm not contributing enough

those weeks when I'm just beat, then I get frustrated, and then I can get

touchy.

The fact that he recognizes the changes in himself shouldn't give him a free

pass to be nasty...if anything since he does see these changes happening he

should be able to find some help with them. Either thru his doctor or

perhaps a therapist to help him work thru the short temper stuff.

Also as you get closer to dialysis the toxin build up can make even a low

stress job impossible to do. It's hard to think straight on some

medications too and that can add to the frustration and mental exhaustion

level. Unfortunately we, as humans, tend to treat those we work with/are

acquaintances with better than we treat our family members. He may feel

like he has to keep things in check at work which most likely adds to the

stress level, then when he gets home he feels " safe " letting loose with

you...I'm not trying to excuse his behavior but just noting an observation I

have made with other families (and my own family) over time.

Also many people with IgAN have said " because you don't look sick people

don't seem to understand how you feel. " This in itself can be frustrating.

On the outside you look perfectly fine and for the better part of the day

you might even feel fine but that time of the day hits (for me it's about 3

pm) and you feel start to feel horrid, tired, shaky, can't think

straight...on the outside you still look fine but on the inside you just

want to curl up in a ball and take a nap and heaven help anyone who bugs

you. If I get an hour to just rest or even nap I'm great for the rest of

the day, if I miss out on that hour I can become a bear very fast.

I hope you both can find a solution.

Amy

No Energy / Irritable/ Relationship

> Insurance will not cover costly Epo injections until my boyfriends

> level drops. He is visibly anemic, body cold to the touch, on alot of

> meds including several blood pressure meds, close to pre-dialysis.

>

> PROBLEM-after 8 hours at a very stress-fee job he has no energy,is

> highly irritable, very short tempered, & has no desire to do

> anthing but sit. No activities.

>

> QUESTION-He admits he has changed and advises me he will not be

> himself (temper and activity wise)until he gets a transplant. WHAT

> CAN BE DONE?

>

>

>

>

>

> 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]

I'm pretty dreadul at times, thankfully I've a wife who can coax me

along, it's taken some time for me to realise what I do, I've eaten a

lot of humble pie when I realise what a jerk I've been

High blood pressure also makes me do the WWF wrestler thing, storming

around, lots of noise, very aggressive, bit like a male dominant

chimp demonstrating how tough he is by shaking trees and shouting,

except I don't have trees to hand...

PS for low energy I recommend Coenzyme Q10, helps a lot but don't

take too much or you end up like tigger Bizarrely I found

physical exercise helps with energy levels too.

[Guest guest]

I'm pretty dreadul at times, thankfully I've a wife who can coax me

along, it's taken some time for me to realise what I do, I've eaten a

lot of humble pie when I realise what a jerk I've been

High blood pressure also makes me do the WWF wrestler thing, storming

around, lots of noise, very aggressive, bit like a male dominant

chimp demonstrating how tough he is by shaking trees and shouting,

except I don't have trees to hand...

PS for low energy I recommend Coenzyme Q10, helps a lot but don't

take too much or you end up like tigger Bizarrely I found

physical exercise helps with energy levels too.

[Guest guest]

I'm pretty dreadul at times, thankfully I've a wife who can coax me

along, it's taken some time for me to realise what I do, I've eaten a

lot of humble pie when I realise what a jerk I've been

High blood pressure also makes me do the WWF wrestler thing, storming

around, lots of noise, very aggressive, bit like a male dominant

chimp demonstrating how tough he is by shaking trees and shouting,

except I don't have trees to hand...

PS for low energy I recommend Coenzyme Q10, helps a lot but don't

take too much or you end up like tigger Bizarrely I found

physical exercise helps with energy levels too.

[Guest guest]

Your wife sounds like a gem.

Cy

Re: No Energy / Irritable/ Relationship

> I'm pretty dreadul at times, thankfully I've a wife who can coax me

> along, it's taken some time for me to realise what I do, I've eaten a

> lot of humble pie when I realise what a jerk I've been

>

> High blood pressure also makes me do the WWF wrestler thing, storming

> around, lots of noise, very aggressive, bit like a male dominant

> chimp demonstrating how tough he is by shaking trees and shouting,

> except I don't have trees to hand...

>

> PS for low energy I recommend Coenzyme Q10, helps a lot but don't

> take too much or you end up like tigger Bizarrely I found

> physical exercise helps with energy levels too.

>

>

>

>

> 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]

Maybe a bit of both :-)

In a message dated 5/20/2004 1:12:26 PM Pacific Daylight Time,

jeffrey.farr@... writes:

> she is.

>

> hang on is that a complement for my wife or a condemnation of me :-)

>

[Guest guest]

Maybe a bit of both :-)

In a message dated 5/20/2004 1:12:26 PM Pacific Daylight Time,

jeffrey.farr@... writes:

> she is.

>

> hang on is that a complement for my wife or a condemnation of me :-)

>

[Guest guest]

Maybe a bit of both :-)

In a message dated 5/20/2004 1:12:26 PM Pacific Daylight Time,

jeffrey.farr@... writes:

> she is.

>

> hang on is that a complement for my wife or a condemnation of me :-)

>

[Guest guest]

she is.

hang on is that a complement for my wife or a condemnation of me :-)

> Your wife sounds like a gem.

> Cy

>

> Re: No Energy / Irritable/ Relationship

>

>

> > I'm pretty dreadul at times, thankfully I've a wife who can coax

me

> > along, it's taken some time for me to realise what I do, I've

eaten a

> > lot of humble pie when I realise what a jerk I've been

> >

> > High blood pressure also makes me do the WWF wrestler thing,

storming

> > around, lots of noise, very aggressive, bit like a male dominant

> > chimp demonstrating how tough he is by shaking trees and

shouting,

> > except I don't have trees to hand...

> >

> > PS for low energy I recommend Coenzyme Q10, helps a lot but don't

> > take too much or you end up like tigger Bizarrely I found

> > physical exercise helps with energy levels too.

> >

> >

> >

> >

> > 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]

Hi Emili,

The coldness COULD be anemia, but again, it could be other things as well.

Ask his Nephrologist about his levels on hematocrit and hemoglobin next time he

goes. It is a good idea to track his lab values anyway.

My guess would be that he is just going through the grieving process. If he

has let himself go, that may be adding to his unhappiness and frustration too.

Depression is not uncommon in dealing with a chronic illness, but there are

medications that he can take for that.

I am a patient, not a spouse, so I am not the best qualified to give advise

here, but if I can anyway, he probably needs support and understanding as well

as unconditional love right now. It is hard to not feel good. Maybe you can

continue to set a good example of exercising yourself, but try to be

supportive of him not being ready to get back into it himself. It has to be

when he is

ready. sometimes even when we have the best of intentions, our urging our

loved ones to exercise can result in pushing them further away if they feel like

they are being pressured into it. I understand completely your concern for

him being in the best possible shape, but only he can decide he wants to make

the effort.

I hope this helps.

In a message dated 5/20/2004 4:48:02 PM Pacific Daylight Time,

emili300@... writes:

> Coldness, irritability, short tempered, if not part of IgNA, any

> suggestions?

[Guest guest]

Hi Emili,

The coldness COULD be anemia, but again, it could be other things as well.

Ask his Nephrologist about his levels on hematocrit and hemoglobin next time he

goes. It is a good idea to track his lab values anyway.

My guess would be that he is just going through the grieving process. If he

has let himself go, that may be adding to his unhappiness and frustration too.

Depression is not uncommon in dealing with a chronic illness, but there are

medications that he can take for that.

I am a patient, not a spouse, so I am not the best qualified to give advise

here, but if I can anyway, he probably needs support and understanding as well

as unconditional love right now. It is hard to not feel good. Maybe you can

continue to set a good example of exercising yourself, but try to be

supportive of him not being ready to get back into it himself. It has to be

when he is

ready. sometimes even when we have the best of intentions, our urging our

loved ones to exercise can result in pushing them further away if they feel like

they are being pressured into it. I understand completely your concern for

him being in the best possible shape, but only he can decide he wants to make

the effort.

I hope this helps.

In a message dated 5/20/2004 4:48:02 PM Pacific Daylight Time,

emili300@... writes:

> Coldness, irritability, short tempered, if not part of IgNA, any

> suggestions?

[Guest guest]

Hi Emili,

The coldness COULD be anemia, but again, it could be other things as well.

Ask his Nephrologist about his levels on hematocrit and hemoglobin next time he

goes. It is a good idea to track his lab values anyway.

My guess would be that he is just going through the grieving process. If he

has let himself go, that may be adding to his unhappiness and frustration too.

Depression is not uncommon in dealing with a chronic illness, but there are

medications that he can take for that.

I am a patient, not a spouse, so I am not the best qualified to give advise

here, but if I can anyway, he probably needs support and understanding as well

as unconditional love right now. It is hard to not feel good. Maybe you can

continue to set a good example of exercising yourself, but try to be

supportive of him not being ready to get back into it himself. It has to be

when he is

ready. sometimes even when we have the best of intentions, our urging our

loved ones to exercise can result in pushing them further away if they feel like

they are being pressured into it. I understand completely your concern for

him being in the best possible shape, but only he can decide he wants to make

the effort.

I hope this helps.

In a message dated 5/20/2004 4:48:02 PM Pacific Daylight Time,

emili300@... writes:

> Coldness, irritability, short tempered, if not part of IgNA, any

> suggestions?

[Guest guest]

Some of the symptoms you describe can be caused by renal failure. For

example, cold intolerance certainly is one. However, the numbers don't lie.

You have to have a fairly advanced level of renal failure for it to cause

those symptoms. My guess is that it's probably more related to the blood

pressure meds. I myself have had many side effects from those things over

the years, but, there isn't much choice but to take them.

Pierre

Re: No Energy / Irritable/ Relationship

> Thank you.

>

> He was diagnosed at least 6 years ago. Not sure what his #'s currently

are, but his bp meds doubled this last Dr's visit. His feet always feel

cold and hard, his lips always remain cold. If he is not anemic, he may be

unaware that something else is going on.

>

> Coldness, irritability, short tempered, if not part of IgNA, any

suggestions? I encourage him to exercise, explain how it is better for his

health, but he refuses, or participates for 15 minutes and treats me like

I'm some horrible person for wanting to have fun and exercise. 9 months ago

he was muscular and fit as he has been for years, but put his health and me

on hold until he finished some courses, he is now fat - which I pretend

doesn't bother me.

>

> I can see how this might all be depression from frustration.

>

[Guest guest]

Some of the symptoms you describe can be caused by renal failure. For

example, cold intolerance certainly is one. However, the numbers don't lie.

You have to have a fairly advanced level of renal failure for it to cause

those symptoms. My guess is that it's probably more related to the blood

pressure meds. I myself have had many side effects from those things over

the years, but, there isn't much choice but to take them.

Pierre

Re: No Energy / Irritable/ Relationship

> Thank you.

>

> He was diagnosed at least 6 years ago. Not sure what his #'s currently

are, but his bp meds doubled this last Dr's visit. His feet always feel

cold and hard, his lips always remain cold. If he is not anemic, he may be

unaware that something else is going on.

>

> Coldness, irritability, short tempered, if not part of IgNA, any

suggestions? I encourage him to exercise, explain how it is better for his

health, but he refuses, or participates for 15 minutes and treats me like

I'm some horrible person for wanting to have fun and exercise. 9 months ago

he was muscular and fit as he has been for years, but put his health and me

on hold until he finished some courses, he is now fat - which I pretend

doesn't bother me.

>

> I can see how this might all be depression from frustration.

>

[Guest guest]

Some of the symptoms you describe can be caused by renal failure. For

example, cold intolerance certainly is one. However, the numbers don't lie.

You have to have a fairly advanced level of renal failure for it to cause

those symptoms. My guess is that it's probably more related to the blood

pressure meds. I myself have had many side effects from those things over

the years, but, there isn't much choice but to take them.

Pierre

Re: No Energy / Irritable/ Relationship

> Thank you.

>

> He was diagnosed at least 6 years ago. Not sure what his #'s currently

are, but his bp meds doubled this last Dr's visit. His feet always feel

cold and hard, his lips always remain cold. If he is not anemic, he may be

unaware that something else is going on.

>

> Coldness, irritability, short tempered, if not part of IgNA, any

suggestions? I encourage him to exercise, explain how it is better for his

health, but he refuses, or participates for 15 minutes and treats me like

I'm some horrible person for wanting to have fun and exercise. 9 months ago

he was muscular and fit as he has been for years, but put his health and me

on hold until he finished some courses, he is now fat - which I pretend

doesn't bother me.

>

> I can see how this might all be depression from frustration.

>

[Guest guest]

Hey ,

I think it depends on what your dominant chimp act looks like. Your post

did mentally send me back to the days when I worked in a primate lab:)

Cy

Re: No Energy / Irritable/ Relationship

> >

> >

> > > I'm pretty dreadul at times, thankfully I've a wife who can coax

> me

> > > along, it's taken some time for me to realise what I do, I've

> eaten a

> > > lot of humble pie when I realise what a jerk I've been

> > >

> > > High blood pressure also makes me do the WWF wrestler thing,

> storming

> > > around, lots of noise, very aggressive, bit like a male dominant

> > > chimp demonstrating how tough he is by shaking trees and

> shouting,

> > > except I don't have trees to hand...

> > >

> > > PS for low energy I recommend Coenzyme Q10, helps a lot but don't

> > > take too much or you end up like tigger Bizarrely I found

> > > physical exercise helps with energy levels too.

> > >

> > >

> > >

> > >

> > > 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]

Hey ,

I think it depends on what your dominant chimp act looks like. Your post

did mentally send me back to the days when I worked in a primate lab:)

Cy

Re: No Energy / Irritable/ Relationship

> >

> >

> > > I'm pretty dreadul at times, thankfully I've a wife who can coax

> me

> > > along, it's taken some time for me to realise what I do, I've

> eaten a

> > > lot of humble pie when I realise what a jerk I've been

> > >

> > > High blood pressure also makes me do the WWF wrestler thing,

> storming

> > > around, lots of noise, very aggressive, bit like a male dominant

> > > chimp demonstrating how tough he is by shaking trees and

> shouting,

> > > except I don't have trees to hand...

> > >

> > > PS for low energy I recommend Coenzyme Q10, helps a lot but don't

> > > take too much or you end up like tigger Bizarrely I found

> > > physical exercise helps with energy levels too.

> > >

> > >

> > >

> > >

> > > 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

> > >