I am TERRIFIED! Please help...

[tiredandthirsty]

today at the clinic, after 2 hours and 26 minutes of flawless run, 49 minutes to go and my machine starts going crazy.  all kinds of pressure alarms.  the techs come in and try to set my needles right but nothing.  then they opened the line and a HUGE clot came out from the line that goes into the machine not the needle.  they re-connected me and tried to run again, but nope.  same problem. another clot.  they think my access is clotting.  and i am scared s**tless. does that mean my fistula is dying?  will i have to have another one created?  i still feel the thrill (mine's near the left hand wrist and i can feel it right over the scar) but according to the tech, it's weak at some spots.  she said there is flow.  they are going to call the vascular surgeon monday morning as he is out for the weekend and i will find out if he wants to see me or not.  but i don't know how i will be able to survive this weekend without knowing something.

i don't get heparin (don't know why) and have been on the machine since March.  three times a week, 3 hours 15 minutes.  with God's grace, i  have had good bloodwork through out.  i have NEVER had this problem.  EVER.  and now this.  i am so angry and worried at the same time.  angry because what kind of fkcin life is this? it's not enough that we have to deal with thiis treatment, all this gets laid of top?  this is not fair.  #$%#$%^@#$%. 

i don't know what other details i can or need to provide for the learned folks on here to give me some advice.  Help please...i am completely freaking out. 

[Rerun]

BREATHE..... see you can still Breathe.  You might ask 'again' why you are not on heparin.  Everyone I know is on heparin.  It stops you from clotting the machine and you!  That is why we all use it. 

You still feel the thrill so that is good.  When they talk to the Vascular Surgeon ask them if they TOLD him you are not on heparin. 
   

If you do have to have a fistulagram they just go in and balloon some of the narrowings. 

Yes, you can do without this crap on top of the treatments. 

Try and have a good weekend.   

[tiredandthirsty]

thank you ReRun for your prompt response. 

if they do a fistulagram in the morning, can i still get treatment that day?  i had to leave treatment 49 minutes early because of all the problems.   i don't want to miss two days in a row. 

also, is fistulagram same thing as shuntogram (sp?).  that's the word the tech used when she was trying to make me feel better by trying to say positive things.  she also mentioned that everyone has to go in and get their accesses cleaned out every now and then.  is that true?  i did have to do a "maintenance" thing back in march when i was about to start.  but i didn't know it was a repetitive thing. 

why i am not on heparin, i absolutely have no clue.  but it is a great tip to make sure to ask that they know i was not on heparin.  thanks for that. 

i have never had this problem, hence the freak out.  it's been 8 months and 2 days till today and the first ever major problem.

[jbeany]

I had to get them done on average every 6 to 8 weeks.  My graft wanted to "heal" shut on a regular basis!  Although mine had to be ballooned much more frequently than most, this is a really common thing for D patients.  Please don't freak out!

I think you need to get a better explanation from your doc as to why you aren't on heparin.  That is NOT a common thing, and they should have explained it to you!

[MommyChick]

Tiredandthirsty I know this can all be very stressful & overwhelming! I'll pray that things go smoothly for you & I hope you can try & relax a little even with everything going on.

I will say I did have a slight clot in mine a while back & they just had to up my heparin to 2ml & that seemed to do the trick for me. I am a little unsure as to why no heparin for you? The only time they took me off heparin was when I was having a procedure done or pregnant. As far as I know everyone at my clinic needs heparin too. Also a fistula-gram is normal maintenance. Normally I get 1 or 2 a year depending on how I feel my fistula is doing. Its very common & nothing to be worried about.
Good Luck & God Bless
 

[boswife]

its awful to see you so freeked out and i hope that you have gotton some calming advice so far.  Just for the record, Bo doesnt do heperin and goes 4 hours and slow blood flow,  so at least you know that 'someone' else doesnt use it either. Not that that is of much help, or comfort to you but your not alone atleast..    Im not sure why he doesnt need it, but i do know that when they stopped his asprin due to internal bleeding issue for a while, his lines didnt come as clean as they once were so it is always on my mind that he will clot one day.  I hope that tomorrow brings some answers so you can have a decent weekend.  Im not one to wait patiently for these things, so i really feel for you.  My prayers are with you,,, 

[kitkatz]

Didn't your surgeon tell you sometimes things go wrong with the fistula and it needs a tune up?   Mine told me fistulas need tune ups.
Be cool this weekend and get it checked out.

[tiredandthirsty]

hello all,

i forced myself to go to bed last night to try and calm myself down.  today i am a little calmer, but i keep checking my fistula every 15 minutes or so. 

Thank you very much for all your great responses.  i am very grateful.

Kitkatz:  My fistula was created in 1990 when i was 9.  don't know anything about that since the doctor mostly spoke to my parents.  so all this is absolutely new information for me.  and maybe that's why i am scared. 

Boswife:  i was asked yesterday why i was not on heparin.  by a doctor from the same practice as my doctor.  he was making his weekly rounds when this happened.  i thought he'd know but instead he asked me.  i had to say WTF?  i don't know why i am not on heparin.  i never asked.  i thought the doctor made the decision and i went along with it. 

Mommychick:  thank you very much for sharing your story.  i only know how my fistula is doing when a woman at the clinic comes in once a month with her machine to measure something. don't know what it's called.  she takes down a number.  but i have never had such a problem before so i am a little more scared. 

Thank you ALL for your thoughts, prayers and comments.  knowing that maintenance is a normal thing for a fistula is definitely calming.  good to know God has not thrown another curve ball at me.  i think he overestimates me when it comes to handling things :-).  because he never puts more on anyone's plates unless he thinks they can handle it. 

Hope you are are doing great and hope you keep doing great FOREVER.  i have to call the clinic monday morning to see what the plan is.  i will provide an update as soon as i find out. 

[M3Riddler]

today at the clinic, after 2 hours and 26 minutes of flawless run, 49 minutes to go and my machine starts going crazy.  all kinds of pressure alarms.  the techs come in and try to set my needles right but nothing.  then they opened the line and a HUGE clot came out from the line that goes into the machine not the needle.  they re-connected me and tried to run again, but nope.  same problem. another clot.  they think my access is clotting.  and i am scared s**tless. does that mean my fistula is dying?  will i have to have another one created?  i still feel the thrill (mine's near the left hand wrist and i can feel it right over the scar) but according to the tech, it's weak at some spots.  she said there is flow.  they are going to call the vascular surgeon monday morning as he is out for the weekend and i will find out if he wants to see me or not.  but i don't know how i will be able to survive this weekend without knowing something.

i don't get heparin (don't know why) and have been on the machine since March.  three times a week, 3 hours 15 minutes.  with God's grace, i  have had good bloodwork through out.  i have NEVER had this problem.  EVER.  and now this.  i am so angry and worried at the same time.  angry because what kind of fkcin life is this? it's not enough that we have to deal with thiis treatment, all this gets laid of top?  this is not fair.  #$%#$%^@#$%. 

i don't know what other details i can or need to provide for the learned folks on here to give me some advice.  Help please...i am completely freaking out.

Tiredandthirsty,

There are many factors that can contribute to clotting....It is possible that there is nothing wrong with the fistula.   I would first find out why they are not giving heparin.  Normally when someone does not receive heparin, they do a saline flush every so often to keep the lines and filter clear.
Other things you may want to look into is your hemoglobin.  If your hemoglobin is higher than normal, this can thickenyour blood and cause clotting as well.  Also, you may want to see if they give you Iron. This can also cause thickening of blood/clotting.
Have you been presribed any new medications lately? Some medications can cause clotting.
One other item you may want them to do is a blood test called an InR. This is a test that measures your clotting factors including the time it takes your blood to clot. If it is low, then this also can contribute.

///M3R

[boswife]

Good stuff there M3   and TaT,  thanks for update.  It's so hard to deal with stuff when ya just dont know what it is thats wrong.  Glad your feeling a little more settled today.  Hang in there.  And sure glad ya got all these great people here to help too 

[babycake]

today at the clinic, after 2 hours and 26 minutes of flawless run, 49 minutes to go and my machine starts going crazy.  all kinds of pressure alarms.  the techs come in and try to set my needles right but nothing.  then they opened the line and a HUGE clot came out from the line that goes into the machine not the needle.  they re-connected me and tried to run again, but nope.  same problem. another clot.  they think my access is clotting.  and i am scared s**tless. does that mean my fistula is dying?  will i have to have another one created?  i still feel the thrill (mine's near the left hand wrist and i can feel it right over the scar) but according to the tech, it's weak at some spots.  she said there is flow.  they are going to call the vascular surgeon monday morning as he is out for the weekend and i will find out if he wants to see me or not.  but i don't know how i will be able to survive this weekend without knowing something.

i don't get heparin (don't know why) and have been on the machine since March.  three times a week, 3 hours 15 minutes.  with God's grace, i  have had good bloodwork through out.  i have NEVER had this problem.  EVER.  and now this.  i am so angry and worried at the same time.  angry because what kind of fkcin life is this? it's not enough that we have to deal with thiis treatment, all this gets laid of top?  this is not fair.  #$%#$%^@#$%. 

i don't know what other details i can or need to provide for the learned folks on here to give me some advice.  Help please...i am completely freaking out.

they quit giving me heprin. for its a blood thinner
 and im already on aspril and cumadian.. they should had quit
giving me heprin alone time ago but they just started a few months back
i had a blood clot that showed up
but it was a simple thing to fix and never had another one
as yet
i have been on dialyis for 7yrs 3 days a week
is no fun and glory

[BobN]

Tired,

This is somewhat repetitive from the other posts, but there are some actions you should take.

Of course, it's ok to ask your doctor or nurse why you're not on heparin.  There may be a perfectly good reason for it, but a small dose of heparin might solve the clotting problem.  After treatment, are there streaks in your dialyzer?  (The artificial kidney.)  If so, this is another indication of clotting and would indicate the need for heparin.

Definitely make an immediate appointment to see your vascular surgeon for a fistulagram.  The first step in that process is to do a sonogram where they can pinpoint any narrowing of the vessel.  They might even be able to correct it right there and then.  You won't miss any treatments, they can still use the fistula afterwards.  I had this done recently, because my veinous pressure was too high, and the problem was solved, my fistula has worked perfectly ever since.

Don't freak out, this situation is quite common.  Please drop a note after you've done this and let us know how you are doing.

[lmunchkin]

Just came across this TnT.  This is not uncommon at all.  When ever John has a clot (very seldom) I give him heprin. His blood does get thicker from time to time.  Usually his HgB is higher than normal but all is easily remedied with Heparin.  Sometimes, Ill give a saline bolus to stop the streaking in his filter.
Let us know what doc says, but relax. "don't trouble trouble, till it troubles you" is the wise ole words of my Grandmother.  It rings true today!!!

God bless,
lmunchkin

P.S. I know, Its easier said than done!!!

[Riki]

I get a small done of heparin at the beginning of my run.. without it, I'd clot the machine every time.  It has nothing to do with my fistula.  I've been using it since March of 2010 and I've never had a problem with it.  It's all in the blood.. I don't think it was nice of anyone in your clinic to scare you by saying that your fistula was clotting off, just because there was some clotting in the lines.  Even if you're on heparin, sometimes the lines will clot.

[tiredandthirsty]

thank you all for you continued responses.  i went and saw a movie with my uncle over the weekend to take my mind off of it.  and to be honest, i do feel quite a bit relaxed after reading all your stories.  i am truly grateful to you all for coming to my rescue.   

I have some liver issues as well and as a result of that i am pancytopaenic (low platelets, RBC, low everything).  maybe they might have kept the heparin off because of that.  not sure, i am just throwing darts here.  but honestly, i have stopped thinking about it. 

another thing that happened yesterday was i started getting calls for update of all the transplant listing tests/scans etc.  it is about to be one year for me on the list!  i can't believe it is almost a year now. 

[sullidog]

Do you have a stephoscope? listen to it you should hear a low rumble, if it whistles or is hi in pitch then that's abnormal but if it's swish swish swish without any weird noise then you are fine.

[sullidog]

and yes, clotting on the machine doesn't mean clotting is going on in your access.

[tiredandthirsty]

Hi Sullidog,

thank you for your response.  i don't have a stethoscope unfortunately.  it could be a useful tool. 

Also, Update:

i called at 9 AM today and the tech at the clinic said she  has called the vascular surgeon's office and they are supposed to call her back.  and she will call me back once the surgeon's office calls her back.  when?  i don't know, but i have taken an emergency day off from work and if anything needs to be done, it better be taken care of today.  because i can't keep taking days off from work like this. 

i'll provide another update as soon as i can.  thank you all.

hope you are all doing well and keep doing well forever. 

[tiredandthirsty]

UPDATE #2:

so i got a call from the clinic.  the vascular surgeon's office wants to see me first and run some basic tests to see if they can see something and then decide the next step. i will be heading to their office at 2:30 PM EST today.

Regarding the heparin, i asked and the nurse at the clinic said that since i have very low platelets (based on my last lab, 90K) the doctor must have decided to keep me off of heparin. the usual range for platelets for heparin is 100-150K.  anything under that and there is a risk of bleeding. hence no heparin for me for now.  she has notified the vascular surgeon's office of this and hence they will now try to look for something else and not just blame everything on heparin. 

i will provide another update once i see the doc.  i have to head straight to the clinic after that so might not be able to provide an update immediately, but i will as soon as i can.

[boswife]

so good to hear from you and that things are MOOVING!!  I just remembered something too.  When hubby was in hosp this last time, we were doing dialysis in the hosp (with me doing his needles) and though we got the flash back and all, the blood did not flush to end of line.  Freeked me out (geesh and i already forgot about it).  We didnt do dialysis that day but he saw the VS and they found nothing and........ all was well.  Still have no idea what that was about so really of no help to you, but ......... something may have just been a fluke with you as well.  Gods blessings with you, and hope all is just a simple fix.  Give Him your trust    

[tiredandthirsty]

UPDATE #3:

hi all, hope you are all welll and keep doing well forever.

i am currently sitting at the clinic getting treatment.   came here straight after the VS appointment.  the doctor was not there (he never is, he is always at the hospital) so i was looked at by the NP.  she said most likely you need a "tune up".  i said i dont want any major issues popping up, so lets do what needs to be done.  and i have been scheduled for one of those balloon surgeries for next thursday, dec 13th. 

i am at the clinic running for almost an hour now.  with God's grace, no issues yet and hopefully it stays that way.

thank you all once again for your helpful posts, thoughts, suggestions prayers and everything else.  would have been very difficult without it.

 

[MooseMom]

I hope all of your treatments go well up to the 13th.   

[malaka]

I had a fistulagram and a balloon angioplasty this past summer.  No problems.  Did dialysis at my usual early morning time, walked about a mile to the hospital for the fistulagram and walked back to the dialysis clinic where I'd parked my car.  The secret to my success, I believe, is that I insisted on LOCAL anesthesia for the fistulagram and balloon angioplasty.  It worked like a charm and I didn't feel all woozy when the procedure was over.  In fact, I was cleared to leave quickly, and the PACU nurse commented "let me finish my paperwork first!". 

The vasular surgeon had a resident in with him and commented "you want to avoid clots as they cause earlier failure of the existing fistula no matter how well we clean them out."   Nice to be awake during surgery and get a free medical education.

They didn't let me watch, however, and coverd my head with a drape telling me I wasn't masked so I could cause infection if I were to cough.  I know they didn't mask me so as to leave an "open" airway if something went wrong. 

The surgeon had Nirvana playing during surgery.  Strange.

[malaka]

One more thing.  Since I'd had deep venous thrombosis before I started dialysis, and have had atrial fibrillation, I am on coumadin which prevents any need for heparin. 

I'm not a doctor, so I don't know if coumadin is contraindicated in your case with your low blood levels.  All I kinow is that the doses are forever being adjusted as my INR goes up and down.  Even I can tell when I'm getting too thin as it takes longer to clot and stop the post-needle removal bleeding. 

Heparin works right away, like a gas stove versus coumadin which takes a  while to kick in like an electric stove.  Non-medical analogy, but I trust you get the idea.  And stopping heparin, the effect disappears quickly.  Stopping coumadin, the effect lasts a few days after. 

The most uncomfortable part of the the fistulagram was having my arm pulled at a rather wierd angle and strapped down.  Even though I've gotten good at not moving it at all during dialysis.

And, I did have to fight to get the local.  It seems most people want to be knocked silly.  I didn't.  No pain from the procedure, even with the local.  The surgeon didn't really care, but the office staff and hospital staff thought it odd.  I'm guessing they don't get to bill as much if I'm not knocked out.

[sullidog]

My old surgeon would always do a local and nothing else, he said he doesn't like to do that because if he needs you to hold your breath or do something you need to be alert, only one time did I get asked to hold my breath during a fistulogram which I thought was strange but I guess they do have to have you do it sometimes. My new surgeon does give a sedative though and I prefer that because even though I have had millions of these I do seem to still get knervous, and also I find that even though it's num with local you can still feel the pressure when they inflate the balloon which can be bothersm, so the sedative helps with that. Oh and my surgeon listens to rock music in the operating room too lol.