Re: Hi..I'm new

[Guest guest]

Hi .

Sorry you're in the boat with us....

I'm obsessed a bit with ages of folks with IgA..... may I ask how old you

are? And how far back you can trace your symptoms? And how did you decide to go

on CellCept?

I know what you mean about all bad news... I see my Neph. tomorrow and am

nervous about my lab tests, because all my levels have been creeping up as I

taper down on the steroids. I too am afraid of more bad news.... But will keep

you

all posted after the results come back.

Hang in there... we're here for ya

Ali

[Guest guest]

Hi :

A little freaked out is OK. It can be a lot to absorb. And it is nice to

actually " meet " others like us - I had never met another IgAN patient before

either.

Your neph seems to be taking a very aggressive approach, so I am guessing that

your case is fairly advanced. What are your labs like?

The good news (first and foremost) is that this is not a death sentence. Even

should you reach ESRD, there are options - I had a transplant 11 months ago and

feel better than I can remember feeling.

So welcome, and hope you can become a little less freaked.

klfplot wrote:

Hi there everyone. My name is and I am new here. I found out

that I have IGA N about 2 months ago. I am already on CellCept 500

mg 2 times a day and take Avapro for my BP. Lipitor once a day and

Epogen shots every 2 weeks. And of course the nasty fish oil. I am

still a little freaked out about all that has happened to me and am

just patiently waiting for the bad news to stop and the good news to

start. I am glad I found this site...It's nice to see I am not the

only one....unfortunately.

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[Guest guest]

Hi .

Welcome to the group. As the old joke goes, " I wouldn't want to be a member

of any group that would have me as a member " . I'm sure that goes double when

the price of entry is having an incurable kidney disease. But, at least

you've come to the right place. Being in contact with others who have the

same problem can be very reassuring.

Pierre

Hi..I'm new

>

>

> Hi there everyone. My name is and I am new here. I found out

> that I have IGA N about 2 months ago. I am already on CellCept 500

> mg 2 times a day and take Avapro for my BP. Lipitor once a day and

> Epogen shots every 2 weeks. And of course the nasty fish oil. I am

> still a little freaked out about all that has happened to me and am

> just patiently waiting for the bad news to stop and the good news to

> start. I am glad I found this site...It's nice to see I am not the

> only one....unfortunately.

>

>

[Guest guest]

HI ,

A very warm welcome to you, although sorry you had cause to find your way

here. I am guessing that your IgAN must be fairly advanced since you are

already

needing Epo. I have been on Epo for several years not and it is a miracle

drug in my book because it really makes a big difference in my energy level. I

was very anemic when I started it.

I tried Cellcept earlier this year over the early part of the summer for

three months, but I think I was already too advanced for it to make a

difference.

I am down to 18% function now.

Don't worry about feeling overwhelmed at first. It does take some time for

it to all absorb, but you will get to a point where it is just a normal part of

everyday life before you know it. It also helps to have a group here to

support you every step along the way.

Welcome again .

In a message dated 11/10/2004 8:23:51 AM Pacific Standard Time,

kfpilot@... writes:

> Hi there everyone. My name is and I am new here. I found out

> that I have IGA N about 2 months ago. I am already on CellCept 500

> mg 2 times a day and take Avapro for my BP. Lipitor once a day and

> Epogen shots every 2 weeks. And of course the nasty fish oil. I am

> still a little freaked out about all that has happened to me and am

> just patiently waiting for the bad news to stop and the good news to

> start. I am glad I found this site...It's nice to see I am not the

> only one....unfortunately.

[Guest guest]

Thanks to everyone for the warm welcome...

Just from what I have been reading..someone is trying to decide to travel. I

am also an airline pilot and have been flying for the past 3 months with no

problems. I just don't run throught he airports anymore. HAHA Only last week

did I get grounded because of the new drugs (EPO shots) and to get my anemia

level back up. Once that is done the FAA should give me a waiver to get back

in the air. I have only been dealing with this for a short time, but I will go

on and keep my career that I love so much. I would go to Hawaii and

everywhere else you have the opportunity to go.

I go back on Mon for my 2nd Epogen shot and more tests...hopefully my levels

will be better.....I hope so.

[Guest guest]

Hi ,

If your clearance is 92, you have excellent kidney function although your

serum creatinine is elevated. My guess is that you must be spilling a large

amount of protein and that is what caused the edema or swelling because your

renal

function is pretty good. I did Cellcept for three months this spring/summer

and it did make me nauseated. recommended that I try taking it with food

and that really helped. You might try that to see if it helps with the

nausea.

In a message dated 11/10/2004 6:57:28 PM Pacific Standard Time,

kfpilot@... writes:

> My last labs showed...creatinine clearance of 92

> with a creatinine of 2.0. I still have a high amount of protein in

> my urine. My doc just started me on the Cell cept and Epogen shots

> because I was soo tired. Wow...either I imagined it or I felt more

> energy in 3 days...but on the down side...feel constantly nuasious

> (hoever you spell that)...Does that happen? Is that a common side

> effect?

>

>

[Guest guest]

Hi , Welcome to the group, I'm glad you found us. It sounds as if you

are fairly advanced....what does your creatinine level and GFR look like?

The fish oil can be very nasty. Sams Club carries an enteric coated fish

oil tab that runs just over $8 for 300 tabs. No fishy aftertaste!! Woohoo!

I would like to thank the person here who originally posted about

these...they are quite wonderful.

It's also very normal to be freaked out about your diagnosis. You will

likely go thru all the stages of grief.....denial, anger, bargaining,

depression, and acceptance. This is perfectly normal and the human minds

way of dealing with major change...and the loss of your good health is a

major change. Allow yourself to feel these emotions, cry when you need to,

shout when you need to, ask all the questions and find answers...it's all

part of arriving at acceptance. You can bounce from one stage to the next,

reach acceptance and then something may change with your labs and you might

find yourself going thru things all over again. Just remember it's normal,

it can help keep you moving forward in the midst of it all.

Welcome again,

Amy G.

Hi..I'm new

>

>

> Hi there everyone. My name is and I am new here. I found out

> that I have IGA N about 2 months ago. I am already on CellCept 500

> mg 2 times a day and take Avapro for my BP. Lipitor once a day and

> Epogen shots every 2 weeks. And of course the nasty fish oil. I am

> still a little freaked out about all that has happened to me and am

> just patiently waiting for the bad news to stop and the good news to

> start. I am glad I found this site...It's nice to see I am not the

> only one....unfortunately.

>

>

>

>

>

>

> 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]

Well, I am 35 years old and the only symptoms I had were being

puffy. I was in traing for a new job and got puffy. I thougt I was

having a reaction to a new med that I was on. It went away after a

few days so I thought I was ok. I moved from Dallas to Knoxville and

was out looking at barns for my horse when I noticed puffy feet

again. I went to the doc the next day, she sent me to the emergency

room and they told me I was in Kidney failure. 2 days later I was at

Neph office and 2 weeks later I had a biopsy.

All the terms are still a little new to me, but I will try to answer

your questions. My last labs showed...creatinine clearance of 92

with a creatinine of 2.0. I still have a high amount of protein in

my urine. My doc just started me on the Cell cept and Epogen shots

because I was soo tired. Wow...either I imagined it or I felt more

energy in 3 days...but on the down side...feel constantly nuasious

(hoever you spell that)...Does that happen? Is that a common side

effect?

[Guest guest]

:

Pre-TX - Cellcept and I did not get along well.

Post-TX - No issues - we're nest buddies.

Jing son wrote:

Hi ,

Nausea is one of the side effects of Cellcept. For some it goes away later but

for others it's intolerable. I hope your body adjust to it soon. I'm on cellcept

also (post transplant). I'm handling it real well, no side effects at all.

Take care,

Jing

klfplot wrote:

Well, I am 35 years old and the only symptoms I had were being

puffy. I was in traing for a new job and got puffy. I thougt I was

having a reaction to a new med that I was on. It went away after a

few days so I thought I was ok. I moved from Dallas to Knoxville and

was out looking at barns for my horse when I noticed puffy feet

again. I went to the doc the next day, she sent me to the emergency

room and they told me I was in Kidney failure. 2 days later I was at

Neph office and 2 weeks later I had a biopsy.

All the terms are still a little new to me, but I will try to answer

your questions. My last labs showed...creatinine clearance of 92

with a creatinine of 2.0. I still have a high amount of protein in

my urine. My doc just started me on the Cell cept and Epogen shots

because I was soo tired. Wow...either I imagined it or I felt more

energy in 3 days...but on the down side...feel constantly nuasious

(hoever you spell that)...Does that happen? Is that a common side

effect?

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