Fistula Quit?

[okarol]

Last week, the day before her transplant, the tech was getting ready to hook Jenna up for plasmapheresis. She was feeling her fistula and said "I don't feel the buzz, is it always like this?" Jenna said, "What are you talking about? It works fine. No one has ever said that before." So the tech hooked her up successfully and did it again the next morning. Then, of course, no more dialysis, so we didn't think much about it, until yesterday when Jenna said the fistula was feeling sore. I felt it, and the buzz was completely gone. It quit working? This is her first and only fistula. Is that what happens - it just suddenly stops working? Is it just a coincidence that it stopped now? The doctor at clinic today said "don't worry, she's got a kidney now!" And he said we may want to see a vascular surgeon when we return home (in a couple more weeks) to check it out, but he wasn't concerned. Is there anything else we should be doing? I guess I felt a little panicked, because we have relied on that as her lifeline for so long, and now it's gone. I pray it's a GOOD sign!

Karol

[jbeany]

When my first one quit, that was it - no warning.  It was fine when I checked it in the morning, and then stopped dead quiet that evening.

At least it's got good timing!

[angieskidney]

I felt it, and the buzz was completely gone. It quit working? This is her first and only fistula. Is that what happens - it just suddenly stops working? Is it just a coincidence that it stopped now?

Hi Karol! I can answer this from first hand experience. My first fistula failed before I ever got to use it on the machine. It failed after only 10 days so the one that works for me now is actually my 2nd one. My first one actually quit exactly like your daughter described. I was showing my fistula to my dad's girlfriend and I wanted her to feel it so I felt it first to show her where to feel and suddenly my jaw dropped. I couldn't feel a thing!! It was a weekend and I didn't know what to do! I told my mom I think I should go to the ER and she said "what are they going to do on a weekend? Just wait til dialysis since they are only using your chect catheter anyway." So I lost that fistula and had to get a new one.

I guess it is a good thing Jenna got her transplant eh? I am happy for you but what a coincidence that the fistula stopped! I am surprised that the tech said what s/he did!

[kitkatz]

Miraculous timing!  Yes, the fistula or graft will just stop.  The doctor told me it is not a matter of "if it will happen" but "when it will happen". You can guess my reaction to that little bit of news!

[Epoman]

Last week, the day before her transplant, the tech was getting ready to hook Jenna up for plasmapheresis. She was feeling her fistula and said "I don't feel the buzz, is it always like this?" Jenna said, "What are you talking about? It works fine. No one has ever said that before." So the tech hooked her up successfully and did it again the next morning. Then, of course, no more dialysis, so we didn't think much about it, until yesterday when Jenna said the fistula was feeling sore. I felt it, and the buzz was completely gone. It quit working? This is her first and only fistula. Is that what happens - it just suddenly stops working? Is it just a coincidence that it stopped now? The doctor at clinic today said "don't worry, she's got a kidney now!" And he said we may want to see a vascular surgeon when we return home (in a couple more weeks) to check it out, but he wasn't concerned. Is there anything else we should be doing? I guess I felt a little panicked, because we have relied on that as her lifeline for so long, and now it's gone. I pray it's a GOOD sign!

Karol

Well if I were you I would try to see if the fistula can be de-clotted ASAP, because what happens if the Kidney rejects and she needs dialysis again. It would be in Jennas best interest to keep the fistula working for as long as possible. Jenna just had her transplant, she is not out of the woods yet. If her kidney goes into a severe rejection episode and they want to give her kidney a rest, they will re-start dialysis and she will be back on a Chest-cath if her fistula is clotted. When it comes to a clotted fistula "time" is of the essence. That doctor is an insensitive prick and will not be the one that will need a chest-cath put in "when" the kidney eventually rejects. I wish Jenna the best but at her age she may need a few more transplants in her time. So the longer you can keep that fistula working the better. Some fistulas can last "decades". Goofyninas doctor told her the same thing about her graft when it clotted, "don't worry you are on PD now" WTF? PLEASE see if Jennas fistula can be declotted, you'll be glad you did.

- Epoman

[okarol]

When it comes to a clotted fistula "time" is of the essence. That doctor is an insensitive prick and will not be the one that will need a chest-cath put in "when" the kidney eventually rejects. I wish Jenna the best but at her age she may need a few more transplants in her time. So the longer you can keep that fistula working the better. Some fistulas can last "decades". Goofyninas doctor told her the same thing about her graft when it clotted, "don't worry you are on PD now" WTF? PLEASE see if Jennas fistula can be declotted, you'll be glad you did.

- Epoman

We are supposed to be here in La Jolla for a couple more weeks at least. Should I try to get her to the vascular guy near home before that or would you suggest finding someone down here?
Thanks.

[Epoman]

When it comes to a clotted fistula "time" is of the essence. That doctor is an insensitive prick and will not be the one that will need a chest-cath put in "when" the kidney eventually rejects. I wish Jenna the best but at her age she may need a few more transplants in her time. So the longer you can keep that fistula working the better. Some fistulas can last "decades". Goofyninas doctor told her the same thing about her graft when it clotted, "don't worry you are on PD now" WTF? PLEASE see if Jennas fistula can be declotted, you'll be glad you did.

- Epoman

We are supposed to be here in La Jolla for a couple more weeks at least. Should I try to get her to the vascular guy near home before that or would you suggest finding someone down here?
Thanks.

TIME is very important when it comes to de-clotting accesses, especially fistulas. See someone tomorrow. It may actually already be too late. It's been over a week hasn't it since it clotted? I think it's too late, but you should still get an opinion of a vascular surgeon ASAP. But lets hope Jenna's new kidney works at least 20 years. And then by then they will have an artificial kidney or a kidney grown in a lab via stem cells to match Jenna perfectly.

- Epoman

[okarol]

Why the hell didn't the two techs or the doctor tell us this?
Thanks.

[Epoman]

Why the hell didn't the two techs or the doctor tell us this?
Thanks.

Because as I said the doctor is an insensitive prick, he is betting Jenna's Kidney will last forever which is very optimistic however not realistic. And the techs don't care. Bottom line is they are not the ones living with Kidney disease.

A friend of mine from one of my old centers was on dialysis, got a transplant and it lasted 6 years, he kept his fistula working for those 6 years and when he had a major rejection episode, he had to go back on dialysis, luckily he took care of his fistula and they used his fistula and he didn't need a new access or chest-cath put in. Now if Jenna's new kidney rejects and she needs to restart dialysis they will have to put in a chest-cath AND make a new access somewhere else other than the old spot where her clotted fistulas is now. Which would have been totally avoidable if the doctor actually cared or thought about the "what if's".

That is why one of this sites taglines is "A PLACE TO GET THE TRUTH" even if it is not what you want to hear, it is the truth. But talk to a vascular surgeon and get their opinion on the situation. Ask for a "Fistulagram" to see the extent of the clot, it may be minor and very fixable. But please talk to someone soon. Because if something does happen to the kidney, Jenna will need a new lifeline. I know you do not want to hear this but a transplanted kidney can last just a few hours, days, weeks, months or it can last decades, but you never know.

- Epoman

[angieskidney]

Well if I were you I would try to see if the fistula can be de-clotted ASAP, because what happens if the Kidney rejects and she needs dialysis again. It would be in Jennas best interest to keep the fistula working for as long as possible. Jenna just had her transplant, she is not out of the woods yet. If her kidney goes into a severe rejection episode and they want to give her kidney a rest, they will re-start dialysis and she will be back on a Chest-cath if her fistula is clotted. When it comes to a clotted fistula "time" is of the essence. That doctor is an insensitive prick and will not be the one that will need a chest-cath put in "when" the kidney eventually rejects. I wish Jenna the best but at her age she may need a few more transplants in her time. So the longer you can keep that fistula working the better. Some fistulas can last "decades". Goofyninas doctor told her the same thing about her graft when it clotted, "don't worry you are on PD now" WTF? PLEASE see if Jennas fistula can be declotted, you'll be glad you did.

- Epoman

I'd have to agree with Epoman. I was in and out of the hospital like crazy the whole first year. I had a rejection within the first 2 months. They were able to save it but if it hasn't been more than one day you can still save Jenna's fistula.

Why the hell didn't the two techs or the doctor tell us this?
Thanks.

They tend to think it is not a big deal because Jenna has a transplant now. But they aren't the ones who will have many transplants throughout their lives. They tend to not put themselves in our shoes. That is why.

That is why one of this sites taglines is "A PLACE TO GET THE TRUTH" even if it is not what you want to hear, it is the truth. But talk to a vascular surgeon and get their opinion on the situation. Ask for a "Fistulagram" to see the extent of the clot, it may be minor and very fixable. But please talk to someone soon. Because if something does happen to the kidney, Jenna will need a new lifeline. I know you do not want to hear this but a transplanted kidney can last just a few hours, days, weeks, months or it can last decades, but you never know.

- Epoman

When it comes to AV Fistulas Epoman knows his stuff! And in this case he is definately right! But if it has been even a few days then yes, there is nothing that can be done. Just know for the future. You always want all fistulas cared for because every person can only have so many! 

Well, hopefully the transplant does last years. Don't worry it is not the end of the world! But it is good to know for the future!

[Rerun]

Seems like physicians live in the present.  They worry about tomorrow when it gets here.  They won't do anything.  Hey, they will just create a new access when the time comes.

The problem with this is.  From experience.... when my kidney finally failed (after 17 years) I was NOT going to go back on dialysis because I'd have to get a frick'en chest cath and fistula again.  It is hard enough losing you kidney and lifestyle to get a bunch of damn surgeries too. 

If the fistula can be declotted do it.  If it was small to begin with and because her Red Blood Count is high now and it will just clot again, then don't.  But Epoman is right.  If dialysis is ever needed again you will have to have an access placed.

When I got my kidney if they would have told me I needed my fistula declotted I would have told them to jump off the highest bridge on Earth!  Seventeen years later?  I wish I would have had one.

[Panda_9]

I would be getting it looked at asap as it is so soon after the transplant. My first one stopped buzzing and the surgeon said he could still hear a slight buzz, I couldnt hear it. He told me to come back in a few days. By then it was all red and swollen. They did surgery but couldnt fix it. I am not exactly sure but I would think even if you arent on dialysis you would need it fixed anyway. You dont want any clots dislodging and travelling around.

[renal30yrs]

So far I've been using the same old fistula for the past 27 years but indeed the thought of it ever stop functioning frighens me to death.  I think I took care of my fistula as much as my transplanted kidney while it was functioning.

[Rerun]

So far I've been using the same old fistula for the past 27 years but indeed the thought of it ever stop functioning frighens me to death.  I think I took care of my fistula as much as my transplanted kidney while it was functioning.

That is amazing!  Any tune ups (fistula revisions)?? 

[renal30yrs]

DON'T let them fool around with your fistula as much as possible.  Don't let them use tourniquet!

[Epoman]

DON'T let them fool around with your fistula as much as possible.  Don't let them use tourniquet!

VERY good advice. 

[Sluff]

Why the hell didn't the two techs or the doctor tell us this?
Thanks.

Because as I said the doctor is an insensitive prick, he is betting Jenna's Kidney will last forever which is very optimistic however not realistic. And the techs don't care. Bottom line is they are not the ones living with Kidney disease.

A friend of mine from one of my old centers was on dialysis, got a transplant and it lasted 6 years, he kept his fistula working for those 6 years and when he had a major rejection episode, he had to go back on dialysis, luckily he took care of his fistula and they used his fistula and he didn't need a new access or chest-cath put in. Now if Jenna's new kidney rejects and she needs to restart dialysis they will have to put in a chest-cath AND make a new access somewhere else other than the old spot where her clotted fistulas is now. Which would have been totally avoidable if the doctor actually cared or thought about the "what if's".

That is why one of this sites taglines is "A PLACE TO GET THE TRUTH" even if it is not what you want to hear, it is the truth. But talk to a vascular surgeon and get their opinion on the situation. Ask for a "Fistulagram" to see the extent of the clot, it may be minor and very fixable. But please talk to someone soon. Because if something does happen to the kidney, Jenna will need a new lifeline. I know you do not want to hear this but a transplanted kidney can last just a few hours, days, weeks, months or it can last decades, but you never know.

- Epoman

Can't beat experience the man tells it the way it is..

[BigSky]

Its not uncommon that once a person receives a transplant that the fistula quits.  It has to do with that the kidney starts working its magic and the hemacrit goes up thus making the blood thicker and clotting the fistula off.

[Epoman]

Its not uncommon that once a person receives a transplant that the fistula quits.  It has to do with that the kidney starts working its magic and the hemacrit goes up thus making the blood thicker and clotting the fistula off.

Well if that was true then why don't other veins clot? Ones that are much smaller than a fistula. And why wouldn't healthy people clot? I know people who have had transplants for years and still have working fistulas even grafts.

[okarol]

As far as we know the fistula was fine Monday morning at dialysis in Pasadena. Monday afternoon the tech in La Jolla who
was preparing to do plasmapheresis noticed a weak buzz, as did the tech the next morning (which was Tuesday, right before
the transplant.) I believe the fistula was probably waning but it didn't actually quit buzzing until Thursday.

I spoke to Scripps today and they said that since she is immunosuppressed that they would not like Jenna to have any sort
of surgical intervention now.

[Epoman]

As far as we know the fistula was fine Monday morning at dialysis in Pasadena. Monday afternoon the tech in La Jolla who
was preparing to do plasmapheresis noticed a weak buzz, as did the tech the next morning (which was Tuesday, right before
the transplant.) I believe the fistula was probably waning but it didn't actually quit buzzing until Thursday.

I spoke to Scripps today and they said that since she is immunosuppressed that they would not like Jenna to have any sort
of surgical intervention now.

Yeah that makes sense, since she is heavily suppressed right now. Well cross your fingers or say a prayer, what ever you prefer and let's hope for the best.

[BigSky]

Well if that was true then why don't other veins clot? Ones that are much smaller than a fistula. And why wouldn't healthy people clot? I know people who have had transplants for years and still have working fistulas even grafts.

First I think we need to distinguish that not being uncommon doesn't mean it will always happen.

At the time of my transplant my fistula failed shortly afterword and I was told it was not uncommon to happen because of the blood going  back to normal and being thicker.  Veins and the mechanism of how blood enters and flow through them are different from that and how it enters the  artificial anastomosis of the fistula.  I suspect it all has to do with how the anastomosis is on each person on an individual basis which determines if it quits or not after a transplant.

I suppose it is similar to the action of how quick seal affects a hole in a radiator.  You can dump quick sealer into it and it will only plug up the hole and not the channels in the radiator itself.

[okarol]

We went to the clinic again today and the surgeon explained a little more
about the fistula stopping. He said it is common immediately following a
transplant because:
     Platelets, which are small constituents of blood which aid in blood clotting,
do not work normally in uremia. The defective blood clotting seen in uremia
makes bleeding more common.
     Dialysis does correct the bleeding tendency seen in uremia, but
not to normal.
     Once a working kidney transplant takes place the blood clotting works right
away, and can cause the fistula to clot.

[okarol]

I spoke with the vascular surgeon today. As previously mentioned here, he said that any remedy to a blockage had to
be dealt with immediately, or the damage is done. He said that as long as Jenna has a good pulse in her wrist, and
that the hand on that arm is as warm as her other hand, then the circulation is ok. He said if she develops any pain
or decreased pulse, he wants to see her right away. A new fistula would have to be created if she needs one in the future.