oh crap, we think his fistula is going ....

[poohkari]

 

BOOOOOOOOOO!

So it is Friday night, 11 PM. Wade and I are sitting on the couch and he just said "I can't feel my fistula". We both couldn't feel it, and then it came back, very faintly. Now it dissapeared again. His blood pressure is 100/58, really low for him (hes usually 150/90). Could the weak/missing thrill be related to the low blood pressure? Or should we pack up and head to the ER?

I want him to page his on call nurse. He doesn't want to do anything! What do you think?

[mrhecht]

You should call the nurse. Also, do you happen to have or know anyone who may have a stethoscope? You can use it to listen to the fistula. Are you feeling for a pulse of it or just the buzz? If you can feel the pulse, it may be worthwhile to eat a salty pickle or a bit of broth to quickly raise his blood pressure. Prayers for you that it is still working.

[poohkari]

Thanks, MRHECHT!

He's on the phone with the nurse right now, thankfully I can hear he got his nurse who trained him on NxStage, who knows him really well. We feel a pulse, its strong, its just that his BP is really low! I should know better soon.

And, pickles - what good dialysis patient has pickles at their house?!?

[goofynina]

Others have said on the board to call the surgeon immediately and let them know so it can be resolved and he can continue his treatments, dont wait too long, remember, they are the ones getting paid the big bucks to be on call, call them and help them earn their money 

[Sluff]

Dang I hope it keeps working. 

[poohkari]

His nurse, who is amazing (and super pregnant so we don't want to keep her up late!) has instructed Wade to give himself some saline and then call her back. Thank god for NxStage - otherwise we wouldn't have saline, or a blood pressure cuff at our house! She thinks that as long as we feel a strong pulse, and he's not having any "tinglies" in his fingers, it's most likely a blood pressure issue. Plus, he's been on NxStage for almost a month, and his BP's have gone down significanty, with no change in his rx's. I will keep you all posted ...

[mrhecht]

Thanks, MRHECHT!

He's on the phone with the nurse right now, thankfully I can hear he got his nurse who trained him on NxStage, who knows him really well. We feel a pulse, its strong, its just that his BP is really low! I should know better soon.

And, pickles - what good dialysis patient has pickles at their house?!?

Awesome! Now here's some more tips for you....if you guys are not monitoring his blood pressure at home, you need to. The number ONE cause of access clotting is blood pressure getting too low. Get a digital cuff and take the BP; if he's on blood pressure meds, don't just take the meds if the blood pressure is low, especially post dialysis.

Do you know why his BP went so low? Too much fluid pulled off?

And as for the pickles...yep keep 'em around. When my BP gets too low, its picles or pickle juice or some broth. I like the pickles 'cause they taste better. If you prefer broth (or bouillion) start with a SMALL amount, then take BP after 15 minutes. Too much broth and he'll be thirsty. See the following additional tips:

Don't wrap tape all the way around the arm at the clinic
Don't use clamps
Don't sleep on that arm or keep it bent....you may need to modify your sleep position...it can be done

If the access does clot get in touch with the surgeon yourself if its during office hours.

So happy for you that its still working. Now let him have some salt! Just a little......

[mrhecht]

His nurse, who is amazing (and super pregnant so we don't want to keep her up late!) has instructed Wade to give himself some saline and then call her back. Thank god for NxStage - otherwise we wouldn't have saline, or a blood pressure cuff at our house! She thinks that as long as we feel a strong pulse, and he's not having any "tinglies" in his fingers, it's most likely a blood pressure issue. Plus, he's been on NxStage for almost a month, and his BP's have gone down significanty, with no change in his rx's. I will keep you all posted ...

Ok I feel dumb...didn't know you were at home...that's great! So ignore what I said about "them" at the clinic and don't do any of that bad stuff with tape yourselves!!!!

[Zach]

And make sure he exercises his fistula.
 

[Wattle]

I hope you have it sorted and it was just due to Wades blood pressure.   

And, pickles - what good dialysis patient has pickles at their house?!?

Me    I love pickles 

[tamara]

I hope you have it sorted and it was just due to Wades blood pressure.   

And, pickles - what good dialysis patient has pickles at their house?!?

Me    I love pickles 

me too 

[keefer51]

I'm with Zach exercise the arm. I keep crushed pretzels around. I take a small bag to dialysis in case of really low pressure. I had two in my right arm that the "Thrill was gone..." So i got a new surgeon who fixed me up with one heck of a fistula. I hope it gets better for you. How is your husband feeling? I am sure this may not be asked enough, how are you doing??

[Redbomb]

Hopefully by now the situation is resolved, but I just wanted to let you know that my thoughts & prayers are with you.  It's no fun to have a fistula that isn't working.  I had mine created 3 years ago, and now that it is time to use it, they can't!  So i had to have a cath put in until the fistula gets "rested" enough so they can do a fistulagram on it on Thursday! 

and please, let us know the outcome!

[Black]

... he's been on NxStage for almost a month, and his BP's have gone down significantly, with no change in his rx's.  ...

Most likely the cause of the problem is that inattention to his BP meds.    They should have already been adjusted!  If that happened to Mike I would cut his BP meds in half until Monday.  I hope by now he is fine and his fistula is buzzing well.  Please keep us posted.

[goofynina]

I hope you have it sorted and it was just due to Wades blood pressure.   

And, pickles - what good dialysis patient has pickles at their house?!?

Me    I love pickles 

me too 

Guilty here too your honor 

[Roxy]

After reading this thread, I just bought a jar of pickles and I can't get it open     oh well...anyway, how's Wade's fistula?

[Wattle]

Kari, Time for an update.... How is Wades fistula going?   

[poohkari]

He's going in tomorrow afternoon to do that baloon thing. Ugh! We've heard it's really bad - however, if he asks, they can put him under, right?

[George Jung]

Good luck Wade.

[okarol]

He's going in tomorrow afternoon to do that baloon thing. Ugh! We've heard it's really bad - however, if he asks, they can put him under, right?

Here's more info http://ihatedialysis.com/forum/index.php?topic=4287.0.
and here's Rerun's recent experience http://ihatedialysis.com/forum/index.php?topic=4755.0

Good luck!

[poohkari]

Thanks s much Karol, that was a really good description! We needed that - we were freaking ourselves out!

[mrhecht]

He's going in tomorrow afternoon to do that baloon thing. Ugh! We've heard it's really bad - however, if he asks, they can put him under, right?

Hi there! May I ask why they are doing the balloon procedure. Wasn't this episode due to low BP? Did it actually stop working? Please remind the person doing the procedure that this is a very new fistula and quite fragile. (I'm assuming it's new as you guys just got started, right?)

I've had this done several times, with and without sedation. I had to drive myself more than once, so no "joy juice" allowed. When you do it without sedation, they put a local in for the puncture. There is a kind of burning sensation when they blow the balloon up, but its not that bad. Of course, a little pharmaceutical help is always nice if you have someone else driving!

You can watch the procedure on the monitor which I like to do as it shows you where they're at and where the problem is. They will punture the fistula and inject a dye. They take an x-ray which shows them the progress of the dye and based on that determine where to inflate the balloon.

[poohkari]

We thought it was from his blood pressure, but theres no buzz at all now and his BP is up.... so after speaking with his surgeon, we're going in today assuming he needs the balloon thing but we're open for suprises!

I'll let everyone know what happens later on - his appointment is at 1, so i'm trying to rush into work for a few hours.

[Ken Shelmerdine]

All the best Wade

[poohkari]

It never ends!

So, Wade went in today, and his fistula was collapsed. They poked and prodded and managed to get it open, and Friday we have to go back bright n' early and they are going to try to get the arterial flow restored. If they can't, weve decided Wade will stay with his permacath. If everything goes well (which it has been with the apherisis and chemo), he will be able to get on a transplant list pretty soon. It's just not worth the additional stress/pain/frustration to get him a working fistula, especially since his doctor feels really good about getting Wade a transplant ASAP.

So, another day, another headache, another bump in the road.