For friends with fistulas..

[tiredandthirsty]

how often do you have to go see a vascular surgeon to get your access checked or for maintenance or something like that?  the nurse who checks the blood flow rate with the machine just left my room and i am totally depressed now from what she told me. 

my number 8 weeks ago was 760, but this time it was 620.  meaning blood flow is slowing or something.  so she is going to send me to see a vascular surgeon.  i just got this fixed with surgery five months ago.  the bigger reason i am depressed about it is this is going to cost me an arm and a leg.  last time the vascular surgeon appointment bill was 197 (and the nurse practitioner saw me not even the surgeon) and the 30 minute outpatient surgery cost me 1300.  these freaking hidden expenses keep popping up and it makes me soooo angry that i can't catch a single break.  endless bills from everywhere.  i get one bill on average a day (some bills i am on a payment plan but they still send a bill).  i jump in joy on a day i don't receive a bill.  that's actually the only mail i receive these days.  i just want to live in peace for once dammit.....aaaaaarrrrrrrgghhhhh....i really feel like screaming right now..

 

please let me know how often you have to go for access check, maintenance etc....thanks

Hope you all are doing well and keep on doing well forever.

[MaryJoe]

I don't have a fistula (yet), so I can't really help with your question, I just wanted to say I'm sorry you are having such a rough time.  i can relate to the constant unexpected expenses, some times I feel like an ATM!  Hang in there, someone will be along soon with some useful information.

[tiredandthirsty]

I don't have a fistula (yet), so I can't really help with your question, I just wanted to say I'm sorry you are having such a rough time.  i can relate to the constant unexpected expenses, some times I feel like an ATM!  Hang in there, someone will be along soon with some useful information.

EXACTLY...ATM is absolutely correct word.  except that this ATM does not have money in it.  its not enough to have to deal with dialysis, fluid and diet restrictions etc. that the medical community considers us cash cows.   

thanks a lot for your response.  hope you are doing well and hope you do well forever.

[Cordelia]

I am so glad I live in Canada, I don't have to pay for medical appointments......   

I don't go to my vascular access clinic for a maitenance check.  The D nurses check once a month at my dialysis unit and they compare previous month access flow rates. If there was something wrong, they would definitely refer me back to the vascular access clinic to be checked though. I came close a couple of times, but things ended up being fine.

[noahvale]

*

[lmunchkin]

You are so right Noah. We have been doing NxStage for a little over 2yrs and I believe that alot of the problem before was the speed inwhich they were pushing & pulling out.  I did not understand it then but I understand it now.  Because of the slower BFR, John has no problems with his flows at all.  Its been awesome.  His fistula works great. 
I do remember the time when they ran his BFR 450to 500, and it seemed as though they would complain about his fistula.  He would go to his VS, just to say there is nothing wrong with it.
Its been so long since he has had any problems, that I would be shocked if he did.  Before, we were always waiting for the next trial to hit, but now, it has been so smooth, Thank God!
TNT, on your bills, take care of necessities first: Shelter, food, lights ect...... then pay what you can on medical.  They can't do anything to you if you are paying what you can, even if very little. What would happen if they don't get paid? I don't know, but I do know that it is wrong to put stress on people, especially, chronically ill ones.  Just pay what you feel comfortable paying after you take care of the necessities first.  We got a lot of bills too, but I don't pay anything on them until my priorities are met.

God Bless,
lmunchkin

[sullidog]

My surgeon does a maintenance check every couple months sometimes a month depending on what the aultrasound is showing vs. how well dialysis is doing because they do access flows as well. I prefer the maintenance vs. no maintenance because my graft is tempermental and I can't count the countless interventions I've had on it. I prefer my surgeon do my interventions because the last time I had a radiologist do it he said he opened up all the blockages when they really weren't.

[tiredandthirsty]

how often do you have to go see a vascular surgeon to get your access checked or for maintenance or something like that?  the nurse who checks the blood flow rate with the machine just left my room and i am totally depressed now from what she told me. 

my number 8 weeks ago was 760, but this time it was 620.  meaning blood flow is slowing or something.  so she is going to send me to see a vascular surgeon.  i just got this fixed with surgery five months ago.  the bigger reason i am depressed about it is this is going to cost me an arm and a leg.  last time the vascular surgeon appointment bill was 197 (and the nurse practitioner saw me not even the surgeon) and the 30 minute outpatient surgery cost me 1300.  these freaking hidden expenses keep popping up and it makes me soooo angry that i can't catch a single break.  endless bills from everywhere.  i get one bill on average a day (some bills i am on a payment plan but they still send a bill).  i jump in joy on a day i don't receive a bill.  that's actually the only mail i receive these days.  i just want to live in peace for once dammit.....aaaaaarrrrrrrgghhhhh....i really feel like screaming right now..


please let me know how often you have to go for access check, maintenance etc....thanks

Hope you all are doing well and keep on doing well forever.

First of all, is the "machine" you are referring to a Transonic Ultrasound Monitor?  If so, then there can be numerous reasons for the difference in results from a couple of months ago besides potential narrowing and/or clotting of your fistula.  Needle placement is a common factor.  If the tips are close to the fistula wall, readings will definitely be affected.  If you have buttonholes, but do not practice self-cannulation, then the techniques of different techs could cause less than optimal needle placement.  Have you noticed a rise in your venous pressure?  Your vascular surgeon will probably do an ultrasound, and hopefully, will say keep an eye on it and see what the transonic ultrasound shows next go round before having to perform an intervention.

As far as never ending bills...I'm right there with you.  Seems that once I get one paid off, two new ones take its place.  Most of my physician/out patient procedure visits have to do with my AV GRAFT.  I've had access problems for the last 12+ years of dialysis (going back to my first tour of duty in the mid-1980's).  My current graft was placed 7 years ago and I averaged a couple of angios a year for the first 5.5 years (3 bills - radiologist/out-pt. hospital/vascular surgeon).  Once starting extended hours hemo, I went 1.5 years before having an intervention.  I credit this to less turbulence in the graft from being able to turn my blood pump speed down from 400 ml/min to 300 ml/min.

Sometimes frustration does build up, but hey, do the best you can and keep pluggin' along.  Don't let this define your life!  -  Noahvale   

hi noahvale.  thanks a lot for this elaborate response.  yes, that is the name of the machine i was describing.  i just didn't know the name.  thanks for sharing your experiences with me and the encouraging words.  i really appreciate it.

hope you are doing well and hope you do well forever.

[tiredandthirsty]

You are so right Noah. We have been doing NxStage for a little over 2yrs and I believe that alot of the problem before was the speed inwhich they were pushing & pulling out.  I did not understand it then but I understand it now.  Because of the slower BFR, John has no problems with his flows at all.  Its been awesome.  His fistula works great. 
I do remember the time when they ran his BFR 450to 500, and it seemed as though they would complain about his fistula.  He would go to his VS, just to say there is nothing wrong with it.
Its been so long since he has had any problems, that I would be shocked if he did.  Before, we were always waiting for the next trial to hit, but now, it has been so smooth, Thank God!
TNT, on your bills, take care of necessities first: Shelter, food, lights ect...... then pay what you can on medical.  They can't do anything to you if you are paying what you can, even if very little. What would happen if they don't get paid? I don't know, but I do know that it is wrong to put stress on people, especially, chronically ill ones.  Just pay what you feel comfortable paying after you take care of the necessities first.  We got a lot of bills too, but I don't pay anything on them until my priorities are met.

God Bless,
lmunchkin

hi lmunchkin,

thank you for your response.  i really appreciate you taking the time to write. 

i try to manage the paying bills process just like you mentioned.  but sometimes the hospitals send the bills to collection agencies and i get letters from them saying pay now or we will screw your life up.  i normally pay it off in full when such letters arrive in the mail, so i don't let it hurt my credit.  but it gets a bit difficult when two or three letters come at once.  for example, right now i just received two letters from the same collection agency for epo shots i got at the hospital before i started dialysis.  109.21 per bill.  now i will have to pay it off no choice.  these out of the blue "mandatory" expenses puts me in a bit of a bind.  i wish there was some other way i could deal with it. 

[jbeany]

I averaged about 6 weeks between trips to the vascular surgeon.  Lower pump speeds meant I felt lousy from inadequate D, so I figured those visits were the price I paid for not having the mouthful of pennies taste all the time.

I had someone from the hospital's financial department call to whine about my $5 a month payments and insist I had to pay more.  She insisted I had to have something I could give up so I could pay more.  She suggested the car I didn't own, the internet service I wasn't paying for, the cable I didn't have, and even some of my grocery bill.  She gave up when I told her I was on food stamps.      What was that about can't get blood from a stone blocked fistula?

[tiredandthirsty]

I averaged about 6 weeks between trips to the vascular surgeon.  Lower pump speeds meant I felt lousy from inadequate D, so I figured those visits were the price I paid for not having the mouthful of pennies taste all the time.

I had someone from the hospital's financial department call to whine about my $5 a month payments and insist I had to pay more.  She insisted I had to have something I could give up so I could pay more.  She suggested the car I didn't own, the internet service I wasn't paying for, the cable I didn't have, and even some of my grocery bill.  She gave up when I told her I was on food stamps.      What was that about can't get blood from a stone blocked fistula?

HAHAHAHAHAHA.....that is hilarious.  thanks for the great laugh.  i absolutely loved what you said.  i do it with the hospital here as well.  50 a month is what i do at best.  i can't do it anymore and they seem to be ok with it so far. 

[sullidog]

I tell them "ya can't squeeze blood out of a turnup." then they seem to leave me alone after that.