Questions about getting a Fistula

[metrogirl]

Re: Questions about getting a Fistula

Hi Everyone,

Just an update! I switched nephrologists soon after I last posted and I had decided that if/when I need dialysis I would go with PD instead of Hemo. . This neph suggested NOT to go with fistula, not even as in a 'just in case' scenario.

They told me that because I am maintaining GFR and because my blood work is very good (other than creatinine) that they would prefer to keep me off dialysis and go straight to transplant.

They said that they have had a small few people with blood work like mine who just never got symptoms until they were at GFR3!! When the first symptom appears they will put in the PD surgery, they said no reason to worry and get it before-hand.. They think I have time to test others for transplant first. (I'm GFR 11 last blood test)

my question: Would you agree that if you have no symptoms and your blood work otherwise is very good that you would wait to try and transplant first and not get the dialysis surgery??

I'm thinking to agree with them and just keep going as I am, look to transplant first.

Thanks! ~ Lana

That is what they were hoping to do with Jesse. He was more or less maintaining his GFR until it came crashing down and he ballooned up with 50lbs of fluid, now of course they had no choice but to start dialysis. I think if you can hold off on the dialysis and go straight to transplant that would be great.

Since you have opted for PD if and when the time comes, it only takes a few weeks for the catheter site to heal where as the fistula can take months. I think you are doing the right thing. You are close to an evaluation date right?

[LanaB]

Re: Questions about getting a Fistula

That is what they were hoping to do with Jesse. He was more or less maintaining his GFR until it came crashing down and he ballooned up with 50lbs of fluid, now of course they had no choice but to start dialysis. I think if you can hold off on the dialysis and go straight to transplant that would be great.

Since you have opted for PD if and when the time comes, it only takes a few weeks for the catheter site to heal where as the fistula can take months. I think you are doing the right thing. You are close to an evaluation date right?

Thanks Metrogirl! Thats right! Jesse did the same thing.. Im just like him, I guess we just maintain until we cannot.. Different for everyone, we never know really.
So awesome that he's doing so well now, I was scared for him initially. And now he's just getting more and more handsome with all the weight loss, right? LOL!

Well, I have 2 tests left to go, last one booked in August and then we'll see the results.. at that time I will forward them to Cedar Sinai too.

Take care of yourself! He's so lucky to have you

[metrogirl]

Re: Questions about getting a Fistula

Thanks Metrogirl! Thats right! Jesse did the same thing.. Im just like him, I guess we just maintain until we cannot.. Different for everyone, we never know really.
So awesome that he's doing so well now, I was scared for him initially. And now he's just getting more and more handsome with all the weight loss, right? LOL!

Well, I have 2 tests left to go, last one booked in August and then we'll see the results.. at that time I will forward them to Cedar Sinai too.

Take care of yourself! He's so lucky to have you

Thank you, your'e a doll for saying that. I would do what I do for anyone that I love.

Those endless tests are really daunting aren't they? Jesse would always say "another test, why do I have to do another one"? LOL. It really steams his clams when they do repeated EKG's. He always complains that he just had one, well have another one Jesse and stop complaining. hahaha

Make sure you keep me posted as you make progress. I am following a few of you guys here on the site. Keeping my fingers crossed for all of you.

[LanaB]

Re: Questions about getting a Fistula

Hey Metrogirl,

I have only left to do a lung xray, a mammography, and an ultrasound for fibroids, then done.

Thanks for your support. You've just been awesome. I'm always here checking in on you too.

(Hope you snuck out and got that pedi by the way! LOL! )

Lana

[metrogirl]

Re: Questions about getting a Fistula

Hey Metrogirl,

I have only left to do a lung xray, a mammography, and an ultrasound for fibroids, then done.

Thanks for your support. You've just been awesome. I'm always here checking in on you too.

(Hope you snuck out and got that pedi by the way! LOL! )

Lana

Oh you got the big stuff out of the way. Hooray! I actually just had my mammogram last week which I thought was good timing because Cedars would want one anyway if I were to get worked up as a donor. Everyone said it is so painful but there was zero pain for me.

Youre' almost there Lana! Time goes fast doesn't it?

[Gustine]

Re: Questions about getting a Fistula

Hi Everyone,

Just an update! I switched nephrologists soon after I last posted and I had decided that if/when I need dialysis I would go with PD instead of Hemo. . This neph suggested NOT to go with fistula, not even as in a 'just in case' scenario.


That is very great news to hear, but keep in mind that PD is not always guaranteed to work for everyone until its put in, its a gamble.. it will either work or not... thats what happened to me, was suggested to use PD, but once the time came to put in it was found I was not a good candidate for it, at that time had a graft which only lasted a year, but at same time while having the graft surgeon placed a fistula which i still have.. 27yr old fistula.

If time comes for you to have dialysis and PD didn't go as planned then at all costs try to avoid the chest cathetor and have them place a graft for temp use then along the way have them place a fistula....

Anyway, I hope you stay off dialysis a long time, better that way....LUCK!!



They told me that because I am maintaining GFR and because my blood work is very good (other than creatinine) that they would prefer to keep me off dialysis and go straight to transplant.

They said that they have had a small few people with blood work like mine who just never got symptoms until they were at GFR3!! When the first symptom appears they will put in the PD surgery, they said no reason to worry and get it before-hand.. They think I have time to test others for transplant first. (I'm GFR 11 last blood test)

my question: Would you agree that if you have no symptoms and your blood work otherwise is very good that you would wait to try and transplant first and not get the dialysis surgery??

I'm thinking to agree with them and just keep going as I am, look to transplant first.

Thanks! ~ Lana

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[LanaB]

Re: Questions about getting a Fistula

Wow. Thanks Gustine. I had no idea.

In order to qulaify me the doctors asked if I ever had any stomach surgery besides the caesarean. I said no. They said I'm young and that I would be a candidate. How can they tell?

That makes me wonder now. Do you know the reason why they said you werent able to be one?

Thanks so much for your suggestion to get the graft first. I know I do not want chest cathater. Didnt think of the graft to get you through before fistula. This is exactly why I pose these questions here. People have all sorts of info.

Hope I dont need dialysis ever but one never can tell.. Thanks for your wishes of luck.

Thanks again! and how are you doing by the way??

Lana

[Gustine]

Re: Questions about getting a Fistula

wow. Thanks gustine. I had no idea.

in order to qulaify me the doctors asked if i ever had any stomach surgery besides the caesarean. I said no. They said i'm young and that i would be a candidate. How can they tell?

i also was told basic questions, but the real deal is when surgeon sees you for final approval or during surgery, usually they find other problems they couldn't detect during the process.




that makes me wonder now. Do you know the reason why they said you werent able to be one?

simple, they didn't realize that the kidney infection i had during childhood reached my peritoneal cavity causing damage there.... Many new practicing nephrologists lack pd skills... ( http://www.medscape.com/viewarticle/745565 )


thanks so much for your suggestion to get the graft first. I know i do not want chest cathater. Didnt think of the graft to get you through before fistula. This is exactly why i pose these questions here. People have all sorts of info.

Hope i dont need dialysis ever but one never can tell.. Thanks for your wishes of luck.

thanks again! And how are you doing by the way??

lana

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[NadineZook]

Re: Questions about getting a Fistula

A fistula is a hole. An obstetric fistula of the kind that occurs in many developing countries is a hole between a woman's birth passage and one or more of her internal organs. This hole develops over many days of obstructed labor, when the pressure of the baby's head against the mother's pelvis cuts off blood supply to delicate tissues in the region. The dead tissue falls away and the woman is left with a hole between her vagina and her bladder (called a vesicovaginal fistula or VVF) and sometimes between her vagina and rectum (rectovaginal fistula, RVF). This hole results in permanent incontinence of urine and/or feces. A majority of women who develop fistulas are abandoned by their husbands and ostracized by their communities because of their inability to have children and their foul smell. Traumatic fistula is the result of sexual violence. The injury can occur through rape or women being butchered from the inside with bayonets, wood or even rifles. The aim is to destroy the women and the community within which the sufferer lives. Once committed the survivor, her husband, children and extended family become traumatized and humiliated. The Panzi Hospital in Congo is a pioneer in treating victims of traumatic fistula.