Re: Question about dialysis

[Guest guest]

, OH MY!!! 2 -3 months? Are you ready for that. I am sorry if I have

missed any previous post about this, Lately I've just been skimming the

post.

My prayers are with you. Do you have a donor ready or almost ready???? Oh,

I pray that you do.

God Bless you and have Faith

Cathy..Jennell's Mom

_____

From: iga-nephropathy

[mailto:iga-nephropathy ] On Behalf Of W4JC@...

Sent: Thursday, August 11, 2005 7:28 PM

To: iga-nephropathy

Subject: Re: Question about dialysis

Does this mean you don't want me to offer to donate a kidney to you Pierre?

;-) Seriously, I wish I could.

I went to the renal care clinic today, and was told that I will likely need

to be transplanted in the next 2-3 months or else I will not be able to

avoid

dialysis. I am of the firm belief that you have to get your kidney before

I

do, so yours has to be coming in the next few months too.

That is what I am praying for!

In a message dated 8/11/2005 3:24:14 P.M. Pacific Daylight Time,

pgl-groups@... writes:

I have lots of friends here, but you all have lame kidneys :-)

Pierre

_____

[Guest guest]

Thanks . I sure do appreciate the thoughts and prayers. I have a

feeling as I decline it will seem like forever!

In a message dated 8/11/2005 6:51:44 P.M. Pacific Daylight Time,

garymattcohen@... writes:

:

My thoughts and prayers are with you. While 2 or 3 months may not seem that

long, once you set a date it will seem like forever - trust me.

[Guest guest]

:

My thoughts and prayers are with you. While 2 or 3 months may not seem that

long, once you set a date it will seem like forever - trust me.

Cathy Waelty cwaelty@...> wrote:

, OH MY!!! 2 -3 months? Are you ready for that. I am sorry if I have

missed any previous post about this, Lately I've just been skimming the

post.

My prayers are with you. Do you have a donor ready or almost ready???? Oh,

I pray that you do.

God Bless you and have Faith

Cathy..Jennell's Mom

_____

From: iga-nephropathy

[mailto:iga-nephropathy ] On Behalf Of W4JC@...

Sent: Thursday, August 11, 2005 7:28 PM

To: iga-nephropathy

Subject: Re: Question about dialysis

Does this mean you don't want me to offer to donate a kidney to you Pierre?

;-) Seriously, I wish I could.

I went to the renal care clinic today, and was told that I will likely need

to be transplanted in the next 2-3 months or else I will not be able to

avoid

dialysis. I am of the firm belief that you have to get your kidney before

I

do, so yours has to be coming in the next few months too.

That is what I am praying for!

In a message dated 8/11/2005 3:24:14 P.M. Pacific Daylight Time,

pgl-groups@... writes:

I have lots of friends here, but you all have lame kidneys :-)

Pierre

_____

[Guest guest]

Pierre I know what you mean about not being able to say anything outright. I

have so many people who are interested....say what blood type are you....maybe I

can get one to take a trip to Canada. ;-) The problem I'm having is with the

what if's and I'm not even at the stage where I need a kidney yet. With the

aggressive form of the disease what if my sister gives me a kidney and my IgAN

comes back aggressively? I don't know if I'd be able to live with that. All

three of my sisters said " Well there are three of us so if one donation fails

you already have a few backups for additional transplants. " I know things can

change rapidly when the time comes though and already I've had some friends who

have walked out of my life because they couldn't deal with me having kidney

disease.

I do hope you call comes soon. **Hugs from Colorado** Sure you don't want one

of my kidneys? I'm about done with them. ;-)

Amy G.

Re: Question about dialysis

Thanks Sophia. I appreciate the hug :-)

When I was at the point of approaching esrd, I didn't have a willing donor,

so I just made the decision I would prepare for hemodialysis, and then get

on the waiting list and see what happened. It's a common thing that in many

families, potential donors do offer once the person is actually on dialysis.

I was never even evaluated as a recipient until after I had started

dialysis.

Once I was on dialysis, my youngest brother did come forward to donate, went

through about 6 months of evaluation (most that time is just waiting for

various appointments), and he was disqualified at the end due to something

the transplant surgeon was not comfortable with. We even had a tentative

surgery date at that point. This is how I found out personally that in the

world of kidney transplants, you don't count your chickens before they

hatch.

I never canvassed anyone though. This is just not something I was

comfortable doing, and the transplant team never suggested I do that anyway.

I find that friends and other relatives, like cousins, in-laws, etc., who

aren't comfortable with this tend to gradually drop out of your life.

I have lots of friends here, but you all have lame kidneys :-)

Pierre

[Guest guest]

So true. When I found out about possibly needing a kidney, my friends

and family all said they wanted to go get tested and I believe them,

because that's the type of people they are, and I would've gladly done

it for anyone of them. But, my in-laws and that whole side of the

family, and co-workers, just stopped communicating with me. In fact,

I had a couple of them, come right out and say, I can't give you my

kidney, I'm saving it in case someone in my family needs it some day.

Ooookay, I didn't ask you for it! People are strange sometimes. As

if I would put someone on the spot like that. Hey, you, give me your

kidney or else! LOL!

Also, Amy I was wondering the same thing, since we have the agressive

kind does that mean it will be agressive with the new kidney? I would

feel horrible. I'm going to ask my Neph that question at next appt.

However, I think mine is fast because of so much scar tissue and from

going so long being undiagnosed, so I think medicating from day one

should slow down the progression in the new kidney - I hope.

Jill G.

[Guest guest]

Wow Pierre, that's musta been really tough, to go all that way only to

say it's no-go. Kris is currently at the surgeon stage, all indications are

a go, but like you say, we won't know for sure until he sees him on the

18th. So we will definitely take your advice there.

my neph - to date - has not suggested or planned for me to prepare for

dialysis access, which actually surprises me, given my current function

of 13% and what everyone else is doing.

anyways, i keep praying for you to get a kidney soon!

Sophia

> >> It was kind of the opposite for me. Everyone was a potential donor

> > until it

> >> became apparent I would actually need a kidney, then they all

went

> > back

> >> *into* the woodwork.

> >> Pierre

> >>

[Guest guest]

Hi ,

I didn't realize that you will need a transplant so soon. I hope you both

can get your testing done in time! *hugs*

Sophia

>

> Does this mean you don't want me to offer to donate a kidney to you

Pierre?

> ;-) Seriously, I wish I could.

>

> I went to the renal care clinic today, and was told that I will likely

need

> to be transplanted in the next 2-3 months or else I will not be able to

avoid

> dialysis. I am of the firm belief that you have to get your kidney

before I

> do, so yours has to be coming in the next few months too.

>

> That is what I am praying for!

>

>

>

[Guest guest]

QUOTE

my neph - to date - has not suggested or planned for me to prepare for

dialysis access, which actually surprises me, given my current function

of 13% and what everyone else is doing.

UNQUOTE

I really wasn't active at all with respect to preparing for dialysis. I knew

very little about dialysis at that time. It was my pre-dialysis neph who

said she didn't want to see me have to start dialysis via a catheter. She

had always told me I would start dialysis when my serum creatinine was

between 500 and 600 umol/L. When it first hit 400 in January 2002, she made

me decide on the method of dialysis (although she kind of decided on hemo

for me, as I was still on the fence about hemo vs PD), and she made the

arrangements for the fistula surgery. I had the surgery in April, and I

started dialysis in October of the same year (2002).

Now, I find that many nephs delay the access surgery a little too long, both

in Canada and the US. As a result, many patients need dialysis a little

sooner than expected, and they have to do it on hemodialysis via a catheter.

This is the worse possible outcome. Catheters are very infection-prone,

clot-prone, and they don't allow a high enough blood flow for the most

efficient dialysis. Fistula is definitely the way to go if it's going to be

hemodialysis. Given that, it needs to be done at least six months,

preferably, before starting dialysis. Also, it's not a given that any new

fistula will develop properly. A year before is not too early, because it

allows that much more lead time if something doesn't work out.

In my opinion, if the nephrologist isn't proactive about this, a patient who

chooses hemodialysis needs to specifically ask what the plan is for getting

a fistula ready. Nobody is perfect. In my case, my nephrologist was

proactive about the fistula, but not proactive at all about getting me

evaluated for the transplant list ahead of starting dialysis.

Pierre

Re: Question about dialysis

Wow Pierre, that's musta been really tough, to go all that way only to

say it's no-go. Kris is currently at the surgeon stage, all indications are

a go, but like you say, we won't know for sure until he sees him on the

18th. So we will definitely take your advice there.

my neph - to date - has not suggested or planned for me to prepare for

dialysis access, which actually surprises me, given my current function

of 13% and what everyone else is doing.

anyways, i keep praying for you to get a kidney soon!

Sophia

> >> It was kind of the opposite for me. Everyone was a potential donor

> > until it

> >> became apparent I would actually need a kidney, then they all

went

> > back

> >> *into* the woodwork.

> >> Pierre

> >>

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Thank you

[Guest guest]

Pierre,

Thanks very much for your honest advice, as I have been reading

these posts, I was getting concerned. I'm going to ask my neph at my

next appt in Sept about the dialysis and the need for preparation for

access.

Sophia

> > >> It was kind of the opposite for me. Everyone was a potential

donor

> > > until it

> > >> became apparent I would actually need a kidney, then they all

> went

> > > back

> > >> *into* the woodwork.

> > >> Pierre

> > >>

>

>

>

>

>

>

> 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 Jill,

IgAN can reoccur in the new kidney, but due to the immunosuppresants

post-transplant, if it does appear in the new kidney, it is more likely to be

more slowly progressing.

-----Original Message-----

Also, Amy I was wondering the same thing, since we have the agressive

kind does that mean it will be agressive with the new kidney? I would

feel horrible. I'm going to ask my Neph that question at next appt.

However, I think mine is fast because of so much scar tissue and from

going so long being undiagnosed, so I think medicating from day one

should slow down the progression in the new kidney - I hope.

Jill G.

[Guest guest]

I hope so too Sophia. I just got my labs from yesterday and although

creatinine was stable from two weeks ago, everything else got significantly

worse!

The clock is definitely ticking faster than I would like to accept.

In a message dated 8/12/2005 11:16:04 A.M. Pacific Daylight Time,

yipee_ladybug@... writes:

Hi ,

I didn't realize that you will need a transplant so soon. I hope you both

can get your testing done in time! *hugs*

Sophia

[Guest guest]

Plus remember you are basically starting with 100% function again, and treating

the IgAN aggressively with the immuno drugs.

W4JC@... wrote:

Hi Jill,

IgAN can reoccur in the new kidney, but due to the immunosuppresants

post-transplant, if it does appear in the new kidney, it is more likely to be

more slowly progressing.

-----Original Message-----

Also, Amy I was wondering the same thing, since we have the agressive

kind does that mean it will be agressive with the new kidney? I would

feel horrible. I'm going to ask my Neph that question at next appt.

However, I think mine is fast because of so much scar tissue and from

going so long being undiagnosed, so I think medicating from day one

should slow down the progression in the new kidney - I hope.

Jill G.

[Guest guest]

Oh no ! I'm so sorry to hear your news on this front. I think the

more you take off your rose colored glasses, the more I want to put them on!

Have you spoken to your neph about these results yet? If so, any plans in

the immediate future?

BTW - and I were talking about you the other day. He remembered that

when we were in DC you told him something important to remember if thing

ever got difficult - but that he forgot what it was so he hoped that you

remembered it now.

Cy

Re: Question about dialysis

>

> I hope so too Sophia. I just got my labs from yesterday and although

> creatinine was stable from two weeks ago, everything else got

> significantly worse!

> The clock is definitely ticking faster than I would like to accept.

>

>

>

> In a message dated 8/12/2005 11:16:04 A.M. Pacific Daylight Time,

> yipee_ladybug@... writes:

>

> Hi ,

>

> I didn't realize that you will need a transplant so soon. I hope you

> both

> can get your testing done in time! *hugs*

>

> Sophia

>

>

>

>

>

>

[Guest guest]

Hey - are there any DC photos yet?

Nag Nag,

Cy Webb cyashleywebb@...> wrote:

Oh no ! I'm so sorry to hear your news on this front. I think the

more you take off your rose colored glasses, the more I want to put them on!

Have you spoken to your neph about these results yet? If so, any plans in

the immediate future?

BTW - and I were talking about you the other day. He remembered that

when we were in DC you told him something important to remember if thing

ever got difficult - but that he forgot what it was so he hoped that you

remembered it now.

Cy

Re: Question about dialysis

>

> I hope so too Sophia. I just got my labs from yesterday and although

> creatinine was stable from two weeks ago, everything else got

> significantly worse!

> The clock is definitely ticking faster than I would like to accept.

>

>

>

> In a message dated 8/12/2005 11:16:04 A.M. Pacific Daylight Time,

> yipee_ladybug@... writes:

>

> Hi ,

>

> I didn't realize that you will need a transplant so soon. I hope you

> both

> can get your testing done in time! *hugs*

>

> Sophia

>

>

>

>

>

>

[Guest guest]

Hi Cy,

No, I have not talked to my Neph yet. I am sure he wanted me to have

the weekend before he told me the latest news but me being me, I had to

call the advise nurse because I could not stand the suspense all

weekend. I am sure he will call tomorrow so we will see what the plans

are then. I did talk to the transplant coordinator on Friday though

and she thought that it was more than likely that we will try to work

out a transplant before the end of the year, but very questionable if I

would be able to hold off dialysis that long unless I can maintain

stability at 13%.

Any more hints on what I told ? If he can give me even one key

word, I may be able to remember. I think I am suffering from the

dreaded fuzzy thinking that comes along with low renal function :-) I

have been trying to remember. Where were we when we had that

conversation in DC and that may help me remember too.

Re: Question about dialysis

Oh no ! I'm so sorry to hear your news on this front. I think

the

more you take off your rose colored glasses, the more I want to put

them on!

Have you spoken to your neph about these results yet? If so, any plans

in

the immediate future?

BTW - and I were talking about you the other day. He remembered

that

when we were in DC you told him something important to remember if

thing

ever got difficult - but that he forgot what it was so he hoped that

you

remembered it now.

Cy

[Guest guest]

Hi ,

I had my husband's digital camera in DC and did take pictures, but

unfortunately my husband promptly accidentally deleted before I could

even look at them so I am afraid I don't have any to post.

Re: Question about dialysis

Hey - are there any DC photos yet?

Nag Nag,

[Guest guest]

I think I have a great one at the FDR memorial. Let me dig a bit.

Cy

Re: Question about dialysis

>

> Hey - are there any DC photos yet?

>

> Nag Nag,

>

>

>

>

>

>

>

> 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

>