Re: My new neph visit.

February 12, 2003

Dear

Well done on you and your family for having the courage to change Nephs,

it really is, as you say, very important to be able to feel confident,

comfortable, and above all trusting of your medical team, after all we

are placing ourselves fully at their mercy are we not? LOL at the

redhead part of your message, you are in for some fun later with the 5

yr old I bet.

Your message covered every aspect of how each and every one of us at

some point has felt, and I applaud you for recognizing this, and doubly

applaud you for having the strength to face it head on, so encouraging

to read, and encouraging for our new members.

Bless you and Family for taking the time to share your thoughts.

UK Moderator

My new neph visit.

Hello everybody, I have not posted in a while so I will update

everybody where I am at as of today. I saw my new neph for the first

time yesterday. My old neph was not informative and did not like to

give me copies of my labs and never gave a straight answer about any

of my questions. For this reason he and my wife did not hit it off.

There were some tense moments in his office. (It's true what they say

about red heads. Believe me, and I have another that just turned 5 so

I just keep my mouth shut around the house.) My appointment was at

4:00pm and they took me back at 4:15. I finally left at 6:20pm. He

spent the 1st hour asking allot of family questions and that kind of

stuff. The next hour he spent doing the exam and talking over my

options and what our plan for treatment was. I felt a whole lot

better when I left. I don't know about some of you, I take that back

I think I do know that all of you with IGA from reading all the post

want to know what the plan for treatment is going to be. I want to do

what I can to help stop or slow down the progression of this. I know

now what may come in the end but at least give me a chance to go down

fighting. This is something I did not get from my old neph.

Now, some stange things came up during the exam that surprised even

him and I would like to know if any of you have come across this.

The nurse took my BP it was 140/90 lying down. 130/70 sitting up and

then when I stood up she took it 4 times and ask if I felt like I was

going to past out. It was 84/74. When he took it 1st laying down he

said he could feel me tense up and I said I have always been like

this at the doctors. We talk for a minute and told me to think about

my happy place. Laying down it was now 130/70, I sat up and it was

110/74 and standing up it was 100/68. I am on 40mg of accupril twice

a day and 10mg of Norvasc. The 1st thing he said was stop the

norvasc. I don't know if size has anything to do with this but I am

6 foot 1in and weigh 238lbs. He schedule me for a 24 hour BP

monitoring test to see what I really need to be taking. He also put

me on 6000mg a day of fish oil. I don't know anything about this

except what I read in the posts. But if he thinks it will help I

will take it with no questions. I am happy with my new neph and I now

know (after 7 months of not knowing) what I can do to help the

situation. We all at times and deservingly so, feel down and sorry

for ourselves. I have been like that for the last 7 months. I

strongly feel that at some time you have to look yourself in the

mirror and say I have this disease it's not going away no matter how

bad I want it to. We have family and friends and we also have each

other in this group to pull support from to help us down this road. I

thank God for all of you. This is my day to say no matter how bad

things get I will not go without a fight because I owe it to my

family, my friends and to all of you in this wonderful group.

God bless you all,

. South Carolina.

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

home page:

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

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

February 12, 2003

,

Glad you were able to find a neph that you are compatible with. I do think

that's very important. Having the best nephrologist in the world isn't of

much use if they have the " I am God " complex.

Blood pressure is a funny thing. For one thing, it doesn't stay the same all

the time. It goes up and down all day long, in response to the body's needs.

Many people have what's called " white coat hypertension " , which is BP that's

high only when in the doctor's office. The only way I know of the learn how

your BP behaves is to measure yourself, at home and in various situations -

keeping in mind that it's the average resting BP that counts. You can get

some tips on this in the Hypertension Notebook section of www.igan.ca

I had the 24 hour ambulatory BP measurement twice, once in 1994 or 95 I

think, and again in 2000 or so. It gives you a good picture of what the BP

does, and for me, it pretty much confirmed my own home BP measurements,

which was an average of 170/110 at the time, unmedicated. Remarkabley, both

times were about the same, despite being separated by a number of years. You

will see it's a very useful test.

You can also get more info about fish oil in the IgAN Notebook section of

the website.

Pierre

My new neph visit.

> Hello everybody, I have not posted in a while so I will update

> everybody where I am at as of today. I saw my new neph for the first

> time yesterday. My old neph was not informative and did not like to

> give me copies of my labs and never gave a straight answer about any

> of my questions. For this reason he and my wife did not hit it off.

> There were some tense moments in his office. (It's true what they say

> about red heads. Believe me, and I have another that just turned 5 so

> I just keep my mouth shut around the house.) My appointment was at

> 4:00pm and they took me back at 4:15. I finally left at 6:20pm. He

> spent the 1st hour asking allot of family questions and that kind of

> stuff. The next hour he spent doing the exam and talking over my

> options and what our plan for treatment was. I felt a whole lot

> better when I left. I don't know about some of you, I take that back

> I think I do know that all of you with IGA from reading all the post

> want to know what the plan for treatment is going to be. I want to do

> what I can to help stop or slow down the progression of this. I know

> now what may come in the end but at least give me a chance to go down

> fighting. This is something I did not get from my old neph.

>

> Now, some stange things came up during the exam that surprised even

> him and I would like to know if any of you have come across this.

> The nurse took my BP it was 140/90 lying down. 130/70 sitting up and

> then when I stood up she took it 4 times and ask if I felt like I was

> going to past out. It was 84/74. When he took it 1st laying down he

> said he could feel me tense up and I said I have always been like

> this at the doctors. We talk for a minute and told me to think about

> my happy place. Laying down it was now 130/70, I sat up and it was

> 110/74 and standing up it was 100/68. I am on 40mg of accupril twice

> a day and 10mg of Norvasc. The 1st thing he said was stop the

> norvasc. I don't know if size has anything to do with this but I am

> 6 foot 1in and weigh 238lbs. He schedule me for a 24 hour BP

> monitoring test to see what I really need to be taking. He also put

> me on 6000mg a day of fish oil. I don't know anything about this

> except what I read in the posts. But if he thinks it will help I

> will take it with no questions. I am happy with my new neph and I now

> know (after 7 months of not knowing) what I can do to help the

> situation. We all at times and deservingly so, feel down and sorry

> for ourselves. I have been like that for the last 7 months. I

> strongly feel that at some time you have to look yourself in the

> mirror and say I have this disease it's not going away no matter how

> bad I want it to. We have family and friends and we also have each

> other in this group to pull support from to help us down this road. I

> thank God for all of you. This is my day to say no matter how bad

> things get I will not go without a fight because I owe it to my

> family, my friends and to all of you in this wonderful group.

>

> God bless you all,

>

> . South Carolina.

>

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

> home page:

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

> 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

>

February 12, 2003

I feel after writing my post I left out something to me that was very

important. While my post was directed to most of us that are, let's

say, farther along in life. I would not intend my post to be taken

for the parents of the chrildren with this disease. That is by far

to me a more important and delicate situation. I thank God that my

kids are healthy but if anything ever happen (god forbid) to them I

would hope I had the strength and courage that you parents have. For

those of us that have kids we understand this, because we would trade

places with our kids with any illness or pain for them not to have to

go through this. You are truly special people and I applaud you all.

.

> Hello everybody, I have not posted in a while so I will update

> everybody where I am at as of today. I saw my new neph for the

first

> time yesterday. My old neph was not informative and did not like

to

> give me copies of my labs and never gave a straight answer about

any

> of my questions. For this reason he and my wife did not hit it off.

> There were some tense moments in his office. (It's true what they

say

> about red heads. Believe me, and I have another that just turned 5

so

> I just keep my mouth shut around the house.) My appointment was at

> 4:00pm and they took me back at 4:15. I finally left at 6:20pm. He

> spent the 1st hour asking allot of family questions and that kind

of

> stuff. The next hour he spent doing the exam and talking over my

> options and what our plan for treatment was. I felt a whole lot

> better when I left. I don't know about some of you, I take that

back

> I think I do know that all of you with IGA from reading all the

post

> want to know what the plan for treatment is going to be. I want to

do

> what I can to help stop or slow down the progression of this. I

know

> now what may come in the end but at least give me a chance to go

down

> fighting. This is something I did not get from my old neph.

>

> Now, some stange things came up during the exam that surprised even

> him and I would like to know if any of you have come across this.

> The nurse took my BP it was 140/90 lying down. 130/70 sitting up

and

> then when I stood up she took it 4 times and ask if I felt like I

was

> going to past out. It was 84/74. When he took it 1st laying down he

> said he could feel me tense up and I said I have always been like

> this at the doctors. We talk for a minute and told me to think

about

> my happy place. Laying down it was now 130/70, I sat up and it was

> 110/74 and standing up it was 100/68. I am on 40mg of accupril

twice

> a day and 10mg of Norvasc. The 1st thing he said was stop the

> norvasc. I don't know if size has anything to do with this but I

am

> 6 foot 1in and weigh 238lbs. He schedule me for a 24 hour BP

> monitoring test to see what I really need to be taking. He also

put

> me on 6000mg a day of fish oil. I don't know anything about this

> except what I read in the posts. But if he thinks it will help I

> will take it with no questions. I am happy with my new neph and I

now

> know (after 7 months of not knowing) what I can do to help the

> situation. We all at times and deservingly so, feel down and sorry

> for ourselves. I have been like that for the last 7 months. I

> strongly feel that at some time you have to look yourself in the

> mirror and say I have this disease it's not going away no matter

how

> bad I want it to. We have family and friends and we also have each

> other in this group to pull support from to help us down this road.

I

> thank God for all of you. This is my day to say no matter how bad

> things get I will not go without a fight because I owe it to my

> family, my friends and to all of you in this wonderful group.

>

> God bless you all,

>

> . South Carolina.

February 12, 2003

,

Thanks for sharing that experience with us, it did me good.

Derrick

Sydney Australia

> > Hello everybody, I have not posted in a while so I will update

> > everybody where I am at as of today. I saw my new neph for the

> first

> > time yesterday. My old neph was not informative and did not like

> to

> > give me copies of my labs and never gave a straight answer about

> any

> > of my questions. For this reason he and my wife did not hit it

off.

> > There were some tense moments in his office. (It's true what they

> say

> > about red heads. Believe me, and I have another that just turned

5

> so

> > I just keep my mouth shut around the house.) My appointment was

at

> > 4:00pm and they took me back at 4:15. I finally left at 6:20pm.

He

> > spent the 1st hour asking allot of family questions and that kind

> of

> > stuff. The next hour he spent doing the exam and talking over my

> > options and what our plan for treatment was. I felt a whole lot

> > better when I left. I don't know about some of you, I take that

> back

> > I think I do know that all of you with IGA from reading all the

> post

> > want to know what the plan for treatment is going to be. I want

to

> do

> > what I can to help stop or slow down the progression of this. I

> know

> > now what may come in the end but at least give me a chance to go

> down

> > fighting. This is something I did not get from my old neph.

> >

> > Now, some stange things came up during the exam that surprised

even

> > him and I would like to know if any of you have come across

this.

> > The nurse took my BP it was 140/90 lying down. 130/70 sitting up

> and

> > then when I stood up she took it 4 times and ask if I felt like I

> was

> > going to past out. It was 84/74. When he took it 1st laying down

he

> > said he could feel me tense up and I said I have always been like

> > this at the doctors. We talk for a minute and told me to think

> about

> > my happy place. Laying down it was now 130/70, I sat up and it

was

> > 110/74 and standing up it was 100/68. I am on 40mg of accupril

> twice

> > a day and 10mg of Norvasc. The 1st thing he said was stop the

> > norvasc. I don't know if size has anything to do with this but I

> am

> > 6 foot 1in and weigh 238lbs. He schedule me for a 24 hour BP

> > monitoring test to see what I really need to be taking. He also

> put

> > me on 6000mg a day of fish oil. I don't know anything about this

> > except what I read in the posts. But if he thinks it will help I

> > will take it with no questions. I am happy with my new neph and I

> now

> > know (after 7 months of not knowing) what I can do to help the

> > situation. We all at times and deservingly so, feel down and

sorry

> > for ourselves. I have been like that for the last 7 months. I

> > strongly feel that at some time you have to look yourself in the

> > mirror and say I have this disease it's not going away no matter

> how

> > bad I want it to. We have family and friends and we also have

each

> > other in this group to pull support from to help us down this

road.

> I

> > thank God for all of you. This is my day to say no matter how

bad

> > things get I will not go without a fight because I owe it to my

> > family, my friends and to all of you in this wonderful group.

> >

> > God bless you all,

> >

> > . South Carolina.

February 12, 2003

Hi ,

I too am from South Carolina. I live in Rock Hill, but only in the last 4

years. I lived befor that in the midlands and that is where my family is.