new graft used today, but i have a ?

[gothiclovemonkey]

It went well, although it hurt like something else!!!
my question is, after the first use do they kind of puff up and become more promenent? it looks much bigger now... it wasnt infiltrated or anything, the whole loop looks more noticeable to me...
is that normal?

[Angiepkd]

I had a lot of pain using my graft. It did swell after each use, but it was more the whole upper part of my arm. I would ask at your next D appointment and see if the tech or nurse thinks it is normal.  Good luck with the graft! 

[gothiclovemonkey]

holy crap i sprung a leak!

I woke up this a.m. at 3, to feeling wetness. i put my hand over my arm and ran to the bathroom. yuck. i was worried for a moment it wouldnt stop... its not like the fistula, that thing clotted fast, this damn thing didnt want to!
now im all curious as to how this even works... since its a plastic tube, im left to assume that it doesnt have any regeneration properties like my fistula did, ya know, cuz its plastic... lol so how in the heck does this even work after stabbing it a few times, you would think it wouldnt last more than a couple-few treatments before being rendered useless by its many holes?! (not sure why i didnt think about this before now, either lol)

its still rather achey too hope that eases up rather quickly.

i dont trust my clinic, so i always ask you guys even if i get an answer from them!

It was slightly puffed before i left, they said that it looked ok not to worry unless its puss-y, seems more puffed now though, my theory is that since it was my first time, it wasnt to its full potential until the first run?

I do have a strange moon shaped bruise now,  where the gauze was...noticed when i removed the tape,

[gothiclovemonkey]

Today... sucked

Between last night, waking up to my graft bleeding and diaylsis today, ive lost a bit of blood... howmuch blood can a person lose before it is an issue/!?

I was so scared today. that was absolutely horrifying. they went to use my new graft for the second time, yesterday being the first. I told them I bled last night, they said it happens sometimes. they stuck me and it hurt badly but i chocked it up to being so new. then they start the machine, it feels like the darn thing is about to explode, they say it looks fine on the machine, and its hurting so bad and feeling like its expanding, so they restick me 3rd needle, it still feels like this. and i started crying due to the pain and fear...
up comes another tech I ask what the problem is, to which her reply "I think you are causing more of a problem than it really is" WTF?!? Its like they didnt believe me that i was truly in pain. so they both walked away to do something idk what, i happen to look down at my arm, thank god i did, a pool of blood, i yelled out im bleeding, they finally came back and i was bleeding out of two of the three holes, needles STILL IN! So then they decide to use the old fistula, treatment is uneventful. I get up to leave, the blood from the graft leak was still on the floor, it seemed like quite a bit.... so im a bit concerned with how much i lost, and tell them so, they said bloodwork thursday, we will see then......
afterward, i talk to the ONE tech I actually feel like i can talk to, and said ya know u might mention that when someone is scared, crying, and in pain, that its not exactly helpful to have someone walk up and basically accuse you of lying and being a wimp.... does not help one bit. she nodded and said she already left a note for me to talk to the social worker next time shes here.

[jeannea]

What jerks! It's good you can talk to the social worker but she should have scheduled the techs for a talking to. I know your center sucks so she probably means well but still. However, if you're feeling well enough to be mad then you probably didn't lose too much blood. Your body can lose some blood and still be ok but it won't help with your hemoglobin level.

As I said elsewhere (saw it first there), have a drink of water. Eat some protein. Eggs are good if you can't eat a lot. Check your blood pressure. If it gets too low, drink more. If you feel like you might faint, sit down right away, even on the floor. If you do faint, call them when you wake up. Otherwise, if you feel ok you should be ok.

I'm sorry they don't care if you're in pain.

[gothiclovemonkey]

oh is that you? haha i didnt know that!!!

im sure im OK i just dont want my hemoglbn t drop too much, i struggle enough with that
also, if i were to bleed again, in my sleep... i want to be prepared!

I also forgot to mention this, when they stuck me the blood they pulled was black... has anyone ever had that?

[obsidianom]

Is there a reason you have a graft? You mentioned a fistula they used. Why did you stop using it?

[jeannea]

Have you considered asking someone else for help? The thread at the top of the page says Report lack of care. It is most likely against the rules (maybe law) to not clean up a blood spill. You are not getting proper care. You have had so many problems. I'm sure if you took the time you could list the most important ones. Maybe someone here has better advice who to appeal to.

I just have to ask: WHERE THE HELL IS YOUR DOCTOR IN ALL THIS? Why is he allowing substandard care?

[gothiclovemonkey]

The reason i got the graft, my fistula is 7 yrs old and it has been having issues and according to the dr the ulcers could bust open?

ive had numerous people tlel me i should report them, but i talked to them in jan (the first time they screwed up majorly) some even suggested a lawyer, but im not that kind of person... altho im starting to think i might HAVE TO...


this is getting so ridicluous!


my doctor is just as bad... when i went thru that crap in jan, it was because of him.. his claim as to why it happened... "You dont present clinically" I TOLD THEM FROM DAY ONE that I am weird and dont fit the usual mold! I have been arguing with them since i started there about the cramping too, it has absolutely nothing to do with Dialysis, but they dont want to hear it. so they keep pumping up my DW and giving me fluid when thats not what i need.
IM SICK OF THIS i dont know how muchmore i can take!!!!!!!!!!!!!

[gothiclovemonkey]

maybe its me?
im the problem...

i mean, it has to be right?

then again the other day i struck up a convo with one of the elderly gents, just random how are ya stuff, he told me that they "told lies, trying to get him in trouble, saying he was going to shoot up the place" because he had somthing in his pocket, so he JOKINGLY said oh wow, it kind of looks like i have a gun in my pocket............. WTF
they called my dad and told him i suicidal when i told them it was my body, my choice if i wanted to come off, i didnt care if it killed me or not, thats entirely MY CHOICE... how is that suicidal? its fact...

idk...

i feel like either they will be the cause of my death, or ill finally have too much of this crap and just give up...
i keep reminding myself what im fighting for. i love my child way to much to give up on him. its just so hard.... so very hard right now. and i feel very alone because i cant really talk to anyone about this, except online... and thats really not quite the same... and having to wait for a response lol
my husband cant handle hearing me talk about it, and my dad worries so much i feel bad when i talk to him about it, i did today, and could hear it in his voice, and they of course never know what to say either... so its like talking to a wall, that occasionally grunts or sighs...

[jeannea]

You're not the problem. You seem rational to me. I believe you don't fit the mold and they don't know how to deal with that. They are supposed to make the effort to learn what they need to learn. They are supposed to keep their eyes open for when you need help during your treatment. They are supposed to act like professionals. I would never expect them to be perfect but they are not being medical professionals who should be responsible for decent treatment.

I would not recommend joking about guns like the old guy you mentioned. Don't swear at them or threaten them as that will undermine your position. You should always be able to exercise your rights like coming off early.

I don't know if a lawyer is the right way to go. You can definitely yalk to one for advice if that's what you want. My concern would be that if you're suing them they may not treat you. I have never had to complain about anything this serious. I wish someone who had would give advice. Definitely read the sticky thread about Report lack of care. You may be better off going to your regional network.

Is there any chance of you finding a therapist? I think it would help you to have someone to vent to. There are therapists who charge on a sliding scale if you can't afford it. A therapist can really help.

[gothiclovemonkey]

i try very hard not to go crazy while im dealing with stuff , i wont deny there have been a few times ive lost myself on them... but i do apologize, and i feel horrible for it.
a few weeks ago i was cramping badly (i have issues with that, they dont seem to understand, and just ignore me now when i do) so i stood up, which is a huge NO NO to them... the told me to sit down, i said wlel im over here cramping you dont want me to disturb others, so im doing what i gotta do! i was in the wrong, i know that, but damn... i can only take so much!

I have a therapist, i called her tonight, because i dont see her for a bit, she didnt really know what to say, but i could vent, at least.

not to sue, but to document the trouble ive had, JUST IN CASE... i wouldnt sue unless it was needed. I think entirely to many sue at the drop of a hat, that does no good, and what the hell would i gain but more trouble???

i went to the er, im hurting so bad they gave me some pills til my appt thurs...

[Michael Murphy]

I feel bad for you.  I important to realize that you should be listened to by the staff. The clinic I go to pulled me off of heparin because I told them I was bleeding in my right eye.  No questions asked they began a flush back every half a hour to avoid damaging my eye further.  Your problems with  the doctor  and clinic are serious.  If there is another clinic I would switch to a it even if a bit further.  And I would switch to a doctor that takes your problems seriously.

[Charlie B53]

You are not the problem.

You do not need a mental therapist so much as you need COMPETENT medical staff and a Dr that will look into your symptoms and figure out what treatment you need.

Where are you?  Are there other Neph's and clinic's anywhere within a reasonable distance?

It may be time for you to start shopping for a Dr and clinic.  Do not be afraid of making an appt to 'interview' a new Dr.  If you do not 'feel' right talking to a new Dr, pass on that one and check out the next.  If you cannot have confidence in your medical staff you do not have the right Dr.

You have the right to competent medical treatment.  If they are not taking adequate care of you then you MUST go over their head and speak to someone of authority to make improvement of their actions.

A 'normal' person can safely donate a pint of blood without too much discomfort.  Being on dialysis I wouldn't doubt that for us that amount of blood loss may not be recommended.  However, it is difficult to gauge the amount of blood on the floor as even a small amount can look like an awful lot.  I'm told you can just about paint a whole room walls with just one pint as the color doesn't seem to fade even when spread pretty thin.

Any bleed should be immediately attended too as it is an obvious sign that something is NOT correct with your treatment.

It can be extremely difficult to keep your cool when dealing with idiots, but you must, as when you spout off it only gives them a chance to claim that you are not compliant.

Stay strong, use your telephone and start checking on other Dr's, there is one out there that does care.  You just have to search until you find him/her.  Once you do then things will start sorting out and become so much easier.

Let us know how it is going.

Take Care,

Charlie B

[iolaire]

then they start the machine, it feels like the darn thing is about to explode, they say it looks fine on the machine, and its hurting so bad and feeling like its expanding, so they restick me 3rd needle, it still feels like this. and i started crying due to the pain and fear...
up comes another tech I ask what the problem is, to which her reply "I think you are causing more of a problem than it really is" WTF?!? Its like they didnt believe me that i was truly in pain. so they both walked away to do something idk what, i happen to look down at my arm, thank god i did, a pool of blood, i yelled out im bleeding, they finally came back and i was bleeding out of two of the three holes, needles STILL IN! So then they decide to use the old fistula, treatment is uneventful. I get up to leave, the blood from the graft leak was still on the floor, it seemed like quite a bit.... so im a bit concerned with how much i lost, and tell them so, they said bloodwork thursday, we will see then......

It’s my understanding that there are region organizations who will advocate on your behalf. 

From what I have found, if you are on Medicare and in Illinois the organization can serve as a mediator Telligen Illinois http://www.telligenqio.org/patients-and-families/beneficiary-complaints .  This would be one route to address center complaints without going legal on them.  In also would be taken seriously by the ownership of the center and I expect that there are some sort of no retaliation rules under the Medicare guidelines.  But that being said you could face retaliation or an increase in the view that you are a troublemaker so if this is the only center that works for you in may be a more difficult choice.

Beneficiary Complaints
If you are a Medicare beneficiary and have concerns or complaints about the quality of care you have received, Telligen is here to help. Telligen conducts full independent, objective, free medical reviews to address concerns like yours. Telligen's reviews can determine whether or not the care provided was necessary, provided in the most appropriate health care setting and met professionally recognized standards of care.

Telligen can help if you are concerned that:
•   You received the wrong medication
•   You receive incomplete instructions or discharge information
•   Received inaccurate information about your medical condition
•   You had an unnecessary procedure performed on you
•   You feel that your benefits or services were terminated too early

A case manager will review your medical information and look into your complaint. Our reviews can determine whether or not the care provided was necessary to evaluate, diagnose or treat an illness or injury and whether or not the care met professionally recognized standards of care.


Here is an explanation of the service Telligen provides from another website:
Quality Improvement Organization
Quality Improvement Organizations receive and investigate patient grievances relating to quality of care generally (e.g., complaints regarding physicians, hospitals, or outpatient facilities other than dialysis facilities). They usually attempt to mediate any disputes brought to their attention. They also engage in quality improvement activities unrelated to patient complaints. Quality Improvement Organizations operate under contracts with the federal Medicare agency.

I feel bad for you.  I important to realize that you should be listened to by the staff. The clinic I go to pulled me off of heparin because I told them I was bleeding in my right eye.  No questions asked they began a flush back every half a hour to avoid damaging my eye further.  Your problems with  the doctor  and clinic are serious.  If there is another clinic I would switch to a it even if a bit further.  And I would switch to a doctor that takes your problems seriously.

I also second this advice; you need to have care givers who will help you along on your treatment.  If you have the ability to pick and choose care givers, then this current situation seems like one to drop.

[iolaire]

Here is an explanation of the service Telligen provides from another website:
Quality Improvement Organization
Quality Improvement Organizations receive and investigate patient grievances relating to quality of care generally (e.g., complaints regarding physicians, hospitals, or outpatient facilities other than dialysis facilities). They usually attempt to mediate any disputes brought to their attention. They also engage in quality improvement activities unrelated to patient complaints. Quality Improvement Organizations operate under contracts with the federal Medicare agency.

oops looks like this excludes dialysis facilities, I still think there are services for that, let me look some more.

This is the site you want:
http://www.medicare.gov/claims-and-appeals/file-a-complaint/kidney-care/complaints-about-kidney-care.html

Here is the Illinois  ESRD Network
http://www.therenalnetwork.org/services/index.php

The Renal Network's Patient Services Department (PSD):
• Handles complaints and grievances
•Provides technical assistance to both patients and staff,
•Identifies and develops educational resources.

The PSD works closely with the Patient Leadership Committee which acts as an advisory group and helps to define issues of patient rights and responsibilities.


The Network ESRD Grievance Process
http://www.therenalnetwork.org/services/grievance.php

[cdwbrooklyn]

ia few weeks ago i was cramping badly (i have issues with that, they dont seem to understand, and just ignore me now when i do) so i stood up, which is a huge NO NO to them... the told me to sit down, i said wlel im over here cramping you dont want me to disturb others, so im doing what i gotta do! i was in the wrong, i know that, but damn... i can only take so much!

I don’t understand; how were you in the wrong if you were cramping and needed to stand to help stop the cramping?  Why do you feel you were in the wrong?    If they choose not to help you when you are cramping then standing usually helps as well.   What is going on with these people?  I would go way over their heads.

[gothiclovemonkey]

thank you for that info, ill take a look at it!

We arent ALLOWED to stand for cramps there!!! so I was wrong, knowing that.
this is the only clinic ive been to that wont allow it at all. most dont like it of course, because bp drops dangers, but they will as a last resort before taking someone off... this place is suffer or sign ama...

i like my old clinic, its so far though, but if stuff doesnt improve, im going to find a way. im short on money, but ive heard there are transportation assistance, so i may call them and talk about it. just... 45 miles one way, and yes, that is the closest, the other closest is the same amount, in the other direction..
and my dr was great

[Charlie B53]

Here in MO the OATS system provides transportation.  There is another one that contracts people to use their POV to transport patients to Dr appts, dialysis, etc., but I don't know the name of the org.

Finding transportation and returning to a Dr and clinic that worked well with you could be the best answer.

I'm hoping it comes together for you quickly as you shouldn't have to put up with substandard treatment, from anyone.

[gothiclovemonkey]

they keep saying they dont think anything is wrong, then why does it hurt worse now than when i had then actual surgery?!?!
ugh
im so scared. this is so ridiculous, i just dont get it.
im calling my old clinic tomorrow!

[cdwbrooklyn]

 [/quote]We arent ALLOWED to stand for cramps there!!! so I was wrong, knowing that.
this is the only clinic ive been to that wont allow it at all. most dont like it of course, because bp drops dangers, but they will as a last resort before taking someone off... this place is suffer or sign ama... [/quote]

I still fail to understand why you were wrong.  How can you be wrong for standing when no one was trying to assist you.  Were you suppose to sit there and be in pain?  Cramping is no joke and should not be taking lightly.  Yes, I do understand that the BP can drop dangerously but what were you suppose to do?   Sometimes it's hard being a D patient in these clinics.  I truly hate the way some clinics treat the patients.  That is one of the reasons, I am glad I am doing it at home.  I would have giving up or murdered someone.  Sheeh 

[Michael Murphy]

You are in the right.  The clinic is trying to force all patients to have the same results.  Every one is unique and not every one has the same problems.  If you are in pain that is a medical issue and for them to ignore is borders on malpractice.  The problem is not you it's the people at your clinic who refuse to do their jobs.  At the clinic I go to they don't want you to stand but I have had a nurse stand at my feet and brace himself so I could push with my leg that was cramping, and this worked.    Not every one is going to react the same and not every one has a perfect graft.  If you are in enough pain then that is a medical event and needs to be treated.  If not a lawyer bring a relative that can represent you in dealing with the morons

[gothiclovemonkey]

went to surgeons appt today, who said that my clinic just needs to learn how to stick. i apparently have a triple infiltration.

i KNOW that when they ask me what the dr said, they arent going to like it....

my dad and step mom said they are going to come visit me while im there on sat, to show them that "i have people who care about me"

[iolaire]

went to surgeons appt today, who said that my clinic just needs to learn how to stick. i apparently have a triple infiltration.

i KNOW that when they ask me what the dr said, they arent going to like it....

my dad and step mom said they are going to come visit me while im there on sat, to show them that "i have people who care about me"

Call ahead and set up a meeting before you start, between the nurse, you and your family, if they are infiltrating you they need to come up with an improved plan for your care.  Unless its the center manager that you should meet with.

[gothiclovemonkey]

The more i think about this the more I feel a bit concerned...
the surgeon just looked at my arm with his eyes... no tests were ran at all...
should that worry me?