Re: disappointing results - A lot like you.

August 28, 2004

Hi Group - I havnt posted for a long time, but I have very recently

gone through the same thing as has been going through. Being a

big girl, my creatinine was ok at 5-6 where it sat for about a year,

My Neph and I decided that my magic number for dialysis graft was

going to be 7. I hit that in January and had surgery in February for

Peritoneal Dialysis catheter placed. Had it externalized end of June

as creatinine jumped from 7-9.6 since February, so started PD on June

28th.

I was extremely uncomfortable with the fluid that you are supposed to

carry around all day in your belly, and on July 5th (Holiday) I sat

down in the car and felt a terrible pop and pain. The fluid in the

belly ruptured my lung lining and all of the dialysis fluid filled up

my right lung. 2.5 liters. Yeah, that was lots of fun. 6 days in

the hospital, oxygen, thoracentesis to try and drain the fluid. We

waited 4 more days after coming home and tried PD again without the

final fill during the day. 2 days later back in the hospital as the

lung just kept filling back up. So Pulmonologist says have to wait 4-

6 weeks before trying again. Which meant on July 20th, had to have

an emergency tunnel catheter put into the clavical and I have been on

Hemodialysis since then.

We are going to try the PD one more time, I start again next weekend,

hopefully it will work better this time with no issues.

Peace and good wishes to everybody.

Jodie

> > > Hi everyone,

> > >

> > > I went to the Transplant Education Seminar yesterday, thinkin

> that

> > i

> > > have plenty of time. Then I went to the neph today and found

> out

> > > that my creatinine has gone from 3.6 to 5.5 to 7.5 over the

last

> 3

> > > months. Not good.

> > >

> > > I have a meeting with the vascular surgeon to talk about

> creating a

> > > fistula in 5 weeks--the earliest I could get in. Given the

time

> it

> > > will take to mature, I am a bit annoyed at the prospect of

> probably

> > > needing a permacath before it is ready. I feel like my neph

> > dropped

> > > the ball last month. I guess the fact that I have taken such a

> > nose

> > > dive caught her by surprise. And she cannot help the surgeon's

> > > overloaded schedule.

> > >

> > > Even though Pierre has done a reasonably good job of scaring me

> off

> > > nocturnal home hemo, I am going to give it a go. I've talked

to

> > > several patients who have had great success with it.

> > >

> > > On the positive side, I'm a 'big girl' (gee, that's never been

a

> > > positive till now)so I can tolerate a high creatinine fairly

> well,

> > I

> > > think.

> > >

> > > My husband has started the bloodwork for the donor workup. It

> takes

> > > about 3 months. We are thinking it would be December or

January,

> if

> > > all goes well.

> > >

> > > I am trying to keep a positive attitude, but it is difficult.

> > Thanks

> > > for your supposrt and prayers.

> > >

August 29, 2004

Hi Jodie

Sorry to hear you've had problems with your dialysis. It just goes to show

that peritoneal dialysis is not for everyone. There can certainly be some

complications with it, as you have experienced. Good luck. I hope you can

resume it.

By the way, you're not alone. Over the two years I've been on hemo, I've met

a number of PD people who had to be on hemodialysis temporarily, and some

that had to stay on it too, due to repeated peritoneal infections.

I think many people, on either type of dialysis, will be happy when the

little portable hemofiltration (not hemodialysis) machines that are being

tested now become mainstream.

Pierre

Re: disappointing results - A lot like you.

> Hi Group - I havnt posted for a long time, but I have very recently

> gone through the same thing as has been going through. Being a

> big girl, my creatinine was ok at 5-6 where it sat for about a year,

> My Neph and I decided that my magic number for dialysis graft was

> going to be 7. I hit that in January and had surgery in February for

> Peritoneal Dialysis catheter placed. Had it externalized end of June

> as creatinine jumped from 7-9.6 since February, so started PD on June

> 28th.

>

> I was extremely uncomfortable with the fluid that you are supposed to

> carry around all day in your belly, and on July 5th (Holiday) I sat

> down in the car and felt a terrible pop and pain. The fluid in the

> belly ruptured my lung lining and all of the dialysis fluid filled up

> my right lung. 2.5 liters. Yeah, that was lots of fun. 6 days in

> the hospital, oxygen, thoracentesis to try and drain the fluid. We

> waited 4 more days after coming home and tried PD again without the

> final fill during the day. 2 days later back in the hospital as the

> lung just kept filling back up. So Pulmonologist says have to wait 4-

> 6 weeks before trying again. Which meant on July 20th, had to have

> an emergency tunnel catheter put into the clavical and I have been on

> Hemodialysis since then.

>

> We are going to try the PD one more time, I start again next weekend,

> hopefully it will work better this time with no issues.

>

> Peace and good wishes to everybody.

>

> Jodie

>

August 29, 2004

Pierre,

When you have a moment, can you tell us more about the little portable

hemofiltration machines? What do these do? Who is making them? I am

completely unfamiliar with this.

Cy

Re: disappointing results - A lot like you.

>

> > Hi Group - I havnt posted for a long time, but I have very recently

> > gone through the same thing as has been going through. Being a

> > big girl, my creatinine was ok at 5-6 where it sat for about a year,

> > My Neph and I decided that my magic number for dialysis graft was

> > going to be 7. I hit that in January and had surgery in February for

> > Peritoneal Dialysis catheter placed. Had it externalized end of June

> > as creatinine jumped from 7-9.6 since February, so started PD on June

> > 28th.

> >

> > I was extremely uncomfortable with the fluid that you are supposed to

> > carry around all day in your belly, and on July 5th (Holiday) I sat

> > down in the car and felt a terrible pop and pain. The fluid in the

> > belly ruptured my lung lining and all of the dialysis fluid filled up

> > my right lung. 2.5 liters. Yeah, that was lots of fun. 6 days in

> > the hospital, oxygen, thoracentesis to try and drain the fluid. We

> > waited 4 more days after coming home and tried PD again without the

> > final fill during the day. 2 days later back in the hospital as the

> > lung just kept filling back up. So Pulmonologist says have to wait 4-

> > 6 weeks before trying again. Which meant on July 20th, had to have

> > an emergency tunnel catheter put into the clavical and I have been on

> > Hemodialysis since then.

> >

> > We are going to try the PD one more time, I start again next weekend,

> > hopefully it will work better this time with no issues.

> >

> > Peace and good wishes to everybody.

> >

> > Jodie

> >

>

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>

August 30, 2004

Jodie,

I am sorry to hear that you had so much trouble with PD.

Actually, toaday I spoke with the home hemo training nurse and she

suggested trying PD first, especially if I only need it for a couple

of months before transplant.

I will meet with the vascular surgeon on Fri to discuss catheter vs

fistula. They often put in a back up fistula for PD patients here in

Australia. If possible, now it seems I'll get the catheter in and

wait on the fistula until I know the outcome of the donor workups on

my husband and sisters.

Did being on the large size have anything to do with your problems?

Is there any sort of problem you had that put you at risk for what

happened? Is it common?

I hope the permacath isn't too uncomfortable for you and that your

hemo goes well. I'll keep you in my thoughts and prayers as we go

through this together.

> > > > Hi everyone,

> > > >

> > > > I went to the Transplant Education Seminar yesterday, thinkin

> > that

> > > i

> > > > have plenty of time. Then I went to the neph today and found

> > out

> > > > that my creatinine has gone from 3.6 to 5.5 to 7.5 over the

> last

> > 3

> > > > months. Not good.

> > > >

> > > > I have a meeting with the vascular surgeon to talk about

> > creating a

> > > > fistula in 5 weeks--the earliest I could get in. Given the

> time

> > it

> > > > will take to mature, I am a bit annoyed at the prospect of

> > probably

> > > > needing a permacath before it is ready. I feel like my neph

> > > dropped

> > > > the ball last month. I guess the fact that I have taken such

a

> > > nose

> > > > dive caught her by surprise. And she cannot help the

surgeon's

> > > > overloaded schedule.

> > > >

> > > > Even though Pierre has done a reasonably good job of scaring

me

> > off

> > > > nocturnal home hemo, I am going to give it a go. I've talked

> to

> > > > several patients who have had great success with it.

> > > >

> > > > On the positive side, I'm a 'big girl' (gee, that's never

been

> a

> > > > positive till now)so I can tolerate a high creatinine fairly

> > well,

> > > I

> > > > think.

> > > >

> > > > My husband has started the bloodwork for the donor workup. It

> > takes

> > > > about 3 months. We are thinking it would be December or

> January,

> > if

> > > > all goes well.

> > > >

> > > > I am trying to keep a positive attitude, but it is

difficult.

> > > Thanks

> > > > for your supposrt and prayers.

> > > >

August 30, 2004

Jodie,

I'm glad you are doing better and that they will give the PD another

try...though I don't know if I could do it after what you have gone thru! You

are one brave woman. I hope things go well for you this time round and you are

able to continue the PD without too much trouble. Good luck with it all and

it's very good to hear from you!

Amy