Re: Old.... but, new...

[Guest guest]

God bless you, hon - I'm so sorry your IGAN sped up on you so fast

and caused your kidney failure. I think that's what we all fear in

having IGAN, especially those of us who rock along pretty good each

year, just barely losing a tiny bit of kidney function over the

years. I think that is what scares me about your post the most, that

your 1.6 creatinine shot up so fast - mine was 1.7 at my last testing

in October, and I've had IGAN for 7 years.

Just know that people exist fairly well on dialysis for years and

years - heck, I met a man at Christmas that is not a candidate for a

transplant (older man), but had been on dialysis for 12 years and

looked great! Realize that at least yours in temporary, that you

have an end-goal in sight, and that you CAN get through this and move

onto the transplant and better health. I'm so glad that your dad can

donate - mine has diabetes and his creatinine isn't that great, so

I'm outta luck there. LOL I do wish you the best on your dialysis

and surgery - let us know how everything goes, okay?

I know you're scared - I would be, too. But take it one day at a

time, don't try carrying weeks of worry on your shoulders. And if

you believe in God, pray and he'll listen and give you comfort.

Teri

> I have been a member of the group for months and have read the

many

> postings by members. Although I have not ever written myself, I

have been

> uplifted, encouraged, and educated by all of the questions,

answers, and stories by

> fellow members. I think I thought if I posted I was giving in and

acknowledging

> that I can't handle this all by myself. I was diagnosed six years

ago, at

> 25. The initial shock of being labeled with an illness eventually

faded and I

> tried to continue on with a normal life with my 2 children (7 & 5

now) and

> decided that I would be one of the 50 percenters that never reached

ESRD. Well,

> October of this year I was informed I am not going to be in that

category, as I

> had hoped. Instead they said I should see if I could find anyone

that would

> be willing to be a donor. Based on test results my hemoglobin was

at 8.6 and

> my creatnin, which had been stable at 1.6 for years, had shot up to

3.7 and my

> blood pressure was elevated. They said I had 30% kidney function

at that

> time. Started Aranesp shots every other week ( for the

hemoglobin ) and then

> Norvasc was prescribed for blood pressure. My Dad began being

worked up and so

> far is a match!!! Thank GOD! But, I was praying that I would not

have to have

> dialysis. For some reason it scares me to death! It scares me

more than the

> transplant itself. My nephrologist and my transplant coordinator

have tried

> to move the transplant work-up through as quickly as possible,

but...it's not

> going to be fast enough. My numbers have continued to rise,

creatnin is now

> at 5.3, and my kidney function is now at about 9%. Thankfully up

until about a

> week ago I truly felt good. I had tired days, but we all get those

even when

> we don't have IGA. This last week things have changed and the

disease is

> starting to kick my butt. So, per all the docs and medical

advisors advice I am

> going to start dialysis. Next Wednesday I am having a perma-cath

put in and

> will be on dialysis for the next 6-8 weeks until my surgery. I am

trying to

> still come to grips with all of this! I'm trying to stay strong,

brave, and

> unscared around my children...the last thing they need to worry

about is if their

> mom is going to be OK. Their father and I were divorced in April,

last year,

> it was tough on them, and I am the only constant in their lives. I

don't

> want them thinking that I won't ever be there for them. I know I

have rambled

> carried on at length about my life story, but I just finally felt

that I needed

> to let it all out. Thank you all for your courageous words and

your positive

> thoughts that you have shared with this group, with me, it has been

> invaluable. Thank you. I think of you all often and hope that you

and your families

> remain strong and healthy. Everyone works through things

differently and

> however you and your family are managing I wish you all of the

best.

> Sincerely-

>

> (Rocky and Casey's mom)

>

>

>

[Guest guest]

,

I just wanted to thank you for posting your message. It doesn't mean you aren't

strong enough to handle all this-quite the opposite. I think you show strength

in your post--you have had quite a bit to handle lately!

I'm so glad your dad is showing to be a match so far! Hopefully that will

continue to go well.

I'm sure it's very scary to be thinking of dialysis and transplant along with

raising 2 kids as a single mom. I just want you to know you did the right thing

by posting your story because now you have made a bunch of instant friends who

will always be here for you when you need someone to " listen " .

You will be in my thoughts and prayers!

Sincerely,

Dana

Old.... but, new...

I have been a member of the group for months and have read the many

postings by members. Although I have not ever written myself, I have been

uplifted, encouraged, and educated by all of the questions, answers, and

stories by

fellow members. I think I thought if I posted I was giving in and

acknowledging

that I can't handle this all by myself. I was diagnosed six years ago, at

25. The initial shock of being labeled with an illness eventually faded and I

tried to continue on with a normal life with my 2 children (7 & 5 now) and

decided that I would be one of the 50 percenters that never reached ESRD.

Well,

October of this year I was informed I am not going to be in that category, as

I

had hoped. Instead they said I should see if I could find anyone that would

be willing to be a donor. Based on test results my hemoglobin was at 8.6 and

my creatnin, which had been stable at 1.6 for years, had shot up to 3.7 and my

blood pressure was elevated. They said I had 30% kidney function at that

time. Started Aranesp shots every other week ( for the hemoglobin ) and then

Norvasc was prescribed for blood pressure. My Dad began being worked up and

so

far is a match!!! Thank GOD! But, I was praying that I would not have to

have

dialysis. For some reason it scares me to death! It scares me more than the

transplant itself. My nephrologist and my transplant coordinator have tried

to move the transplant work-up through as quickly as possible, but...it's not

going to be fast enough. My numbers have continued to rise, creatnin is now

at 5.3, and my kidney function is now at about 9%. Thankfully up until about

a

week ago I truly felt good. I had tired days, but we all get those even when

we don't have IGA. This last week things have changed and the disease is

starting to kick my butt. So, per all the docs and medical advisors advice I

am

going to start dialysis. Next Wednesday I am having a perma-cath put in and

will be on dialysis for the next 6-8 weeks until my surgery. I am trying to

still come to grips with all of this! I'm trying to stay strong, brave, and

unscared around my children...the last thing they need to worry about is if

their

mom is going to be OK. Their father and I were divorced in April, last year,

it was tough on them, and I am the only constant in their lives. I don't

want them thinking that I won't ever be there for them. I know I have rambled

carried on at length about my life story, but I just finally felt that I

needed

to let it all out. Thank you all for your courageous words and your positive

thoughts that you have shared with this group, with me, it has been

invaluable. Thank you. I think of you all often and hope that you and your

families

remain strong and healthy. Everyone works through things differently and

however you and your family are managing I wish you all of the best.

Sincerely-

(Rocky and Casey's mom)

[Guest guest]

Hi ,

I am so glad you posted after reading for so long so we can reach out and

encourage and support you directly. I am so sorry you are needing dialysis, but

thankful that your can look forward to your transplant in 6-8 weeks.

You certainly do have your hands full as a single mother and dialysis too.

Just know we are here for you each step of the way.

On the dialysis front, may I suggest you read through and Pierre's

stories on our sister site at www.igan.ca. I know for me, their willingness

alone

with Marty, Derrick, and so many others to so openly share their

experiences on dialysis, it has helped to alleviate so much of the fear for me.

I

am one who will not beat the odds, it is a matter of when, not if for me, and

this group has helped me come to grips and acceptance of that fact.

I think it helps to let it out and reach out for the support, and that takes

courage.

Please keep us in the loop on how your dialysis goes, and certainly your

surgery date once you get that so we can pray for you on the day of your

transplant.

Take care of yourself!

Welcome again!

[Guest guest]

Hi ,

Not much I can add to what others have already said, except that you will

cope with it. We all do. It can be hard to face at first, but hang in there.

Dialysis is inconvenient, and certainly boring, but you get used to it.

Pierre

Re: Old.... but, new...

> Hi ,

>

> I am so glad you posted after reading for so long so we can reach out and

> encourage and support you directly. I am so sorry you are needing

dialysis, but

> thankful that your can look forward to your transplant in 6-8 weeks.

>

> You certainly do have your hands full as a single mother and dialysis too.

> Just know we are here for you each step of the way.

>

> On the dialysis front, may I suggest you read through and Pierre's

> stories on our sister site at www.igan.ca. I know for me, their

willingness alone

> with Marty, Derrick, and so many others to so openly share their

> experiences on dialysis, it has helped to alleviate so much of the fear

for me. I

> am one who will not beat the odds, it is a matter of when, not if for me,

and

> this group has helped me come to grips and acceptance of that fact.

>

> I think it helps to let it out and reach out for the support, and that

takes

> courage.

>

> Please keep us in the loop on how your dialysis goes, and certainly your

> surgery date once you get that so we can pray for you on the day of your

> transplant.

>

> Take care of yourself!

>

> Welcome again!

>

>

>

>

>