Dealing with my HD center and my AV Fistula

[angieskidney]

*Don't know if this is the right place. IF not then please move it* 

I had dialysis yesterday and as usual my arterial line bled the whole time. Now I am still pretty new to Hemo Dialysis so what do I know? I just know it has been happening ALL month now (for at least 3 weeks)! Infact when my mom took the pics of my dialysis that was the first time it was bleeding DURING dialysis and not the bleeding you get when they pull the needles out!
Finally a nurse today says, "You probably have scar tissue as that is a sign of it."
Really??
So I said, "Ya I think I do"
and she says," Well we don't know for sure.."
And I say, "Oh I think I do because when you cannulate me I can feel it is like you are trying to push through a wall! If it is NOT scar tissue then what is it??"

Why didn't anyone say anything before? Now she is saying I will need another fistulogram (a 3rd one? I just had the 2nd one Aug 21st!) to clear out the scar tissue!

The thing that is upsetting me is that they don't put it into the file (and really they should put everything in the computer right away or else how would others know??) and I am scheduled to get the catheter out this Tuesday! I don't want it out! Especially now that she has said that! That means in the meantime they should NOT cannulate me in the same place they have been doing but with the weird bend I have in my fistula they can only stick in one place before the bend and 2 places after the bend. I will have to tell them to only use the 2 other places but the 2nd of the 2 is right at my elbow which I am not happy about

Any advice?

Then the nurse says, "You should do buttonhole"

GEE YOU THINK!??!?!

What have I been asking for all along? But the other nurses keep saying, "Oh we don't think there is any room on that shift for you right now.."

 

And when I call the Nephrologist's office the secretary tells me to go through the dialysis unit!

But the problem with my unit is they are so slow! I mean, when I went back on a Sodium Profile it took them 3 dialysis days to finally put it into the computer! The 3rd dialysis day a nurse was saying to me, "Why are you trying to set a Sodium Profile? It is not on your chart!" And I answered back, "I have been doing it the last 3 days and if I don't have it my BP drops in the end and I am already off all my BP meds! It is SUPPOSED to be on my chart!" 

*I know this is more like a rant but it is frustration with my dialysis unit so that is why I put it in the Dialysis: Centers section.*

[Epoman]

Have them decrease your heparin, trust me I have had the same problem through out the years. OR you can have them place a 2x2 gauze on top of the needle site, THEN tape it in place and the gauze will slow down the bleeding greatly.

[angieskidney]

Have them decrease your heparin, trust me I have had the same problem through out the years. OR you can have them place a 2x2 gauze on top of the needle site, THEN tape it in place and the gauze will slow down the bleeding greatly.

So I don't need to have a 3rd fistulogram to remove the scar tissue? They keep sticking the arterio needle in the same spot even though I am not on buttonhole and it is a different nurse cannulating me each time. Any other advice? ALL advice is GREATLY appreciated! 

[Epoman]

Have them decrease your heparin, trust me I have had the same problem through out the years. OR you can have them place a 2x2 gauze on top of the needle site, THEN tape it in place and the gauze will slow down the bleeding greatly.

So I don't need to have a 3rd fistulogram to remove the scar tissue? They keep sticking the arterio needle in the same spot even though I am not on buttonhole and it is a different nurse cannulating me each time. Any other advice? ALL advice is GREATLY appreciated! 

No, How much hep are they giving you? If they keep sticking your arterial in the EXACT same spot with a sharp they are going to cause you problems. Do not use the EXACT same spot unless you are getting ready to use blunts. If your area is limited of places to stick then stick in the same area like right next to the previous insertion. But do not stick in the exact same spot unless you plan to go buttonhole. Using sharps in the exact same spot will cause scar tissue and eventually you will not be able to use that spot at all. Look Angie, you say some people there do buttonhole right? on a certain shift....so they must have the blunt needs. SO just DEMAND that they do the buttonhole. Please for the love of GOD stand up for yourself and do not take NO for an answer. Tell then you will start sticking yourself and you take FULL responsibility over any problems. You do have a right to stick yourself don't you or is there some Canadian law saying it's the clinics choice?

[BigSky]

So I don't need to have a 3rd fistulogram to remove the scar tissue? They keep sticking the arterio needle in the same spot even though I am not on buttonhole and it is a different nurse cannulating me each time. Any other advice? ALL advice is GREATLY appreciated! 

I may be wrong but to my knowledge fistulograms do not remove scar tissue.    Anyone??

They are used to remove clots and to expand a stenosis of the vein in the fistula.

I once read it was recommended that if a person needed a fistulagram twice in a 3 month period it was recommended that the fistula be revised.

I seem to recall you said your fistula had a blood flow rate of 800.  That sounds kinda low to me and this may account for why your fistula hasn't developed as good as it could be. 

Maybe someone knows what the ideal rate of  blood flow through the fistula should be and could give some insight on this.

[angieskidney]

The problem is that no one on the shift I am on does buttonhole. I would need to change shifts and they say there is no spot right now. And the spots on my fistula are limited.

I wish I had an advocate to help me make people listen to me in my unit The new social worker is not as good as the old one

[Epoman]

The problem is that no one on the shift I am on does buttonhole. I would need to change shifts and they say there is no spot right now. And the spots on my fistula are limited.

I wish I had an advocate to help me make people listen to me in my unit The new social worker is not as good as the old one

Angie did you read my post? I said you do it! You don't need a nurse, there is nothing to it. You just stick a sharp in the same spot about 7 to 10 times in the exact angle and then you use blunts. They arlread have the blunt needles, so you just demand that YOU will be starting the buttonhole. You won't do any worse than a tech or nurse who messes your arm up now. 

[angieskidney]

The problem is that no one on the shift I am on does buttonhole. I would need to change shifts and they say there is no spot right now. And the spots on my fistula are limited.

I wish I had an advocate to help me make people listen to me in my unit The new social worker is not as good as the old one

Angie did you read my post? I said you do it! You don't need a nurse, there is nothing to it. You just stick a sharp in the same spot about 7 to 10 times in the exact angle and then you use blunts. They arlread have the blunt needles, so you just demand that YOU will be starting the buttonhole. You won't do any worse than a tech or nurse who messes your arm up now. 

But I am scared! I mean,.. how do you stop the fistula from rolling away from the sharp?? That is my main problem!!

I mean .. when even the nurses say, "WOW you really roll!" I kinda worry that I could never be even as good as them at it! Especially without anyone teaching me!!

[Epoman]

The problem is that no one on the shift I am on does buttonhole. I would need to change shifts and they say there is no spot right now. And the spots on my fistula are limited.

I wish I had an advocate to help me make people listen to me in my unit The new social worker is not as good as the old one

Angie did you read my post? I said you do it! You don't need a nurse, there is nothing to it. You just stick a sharp in the same spot about 7 to 10 times in the exact angle and then you use blunts. They already have the blunt needles, so you just demand that YOU will be starting the buttonhole. You won't do any worse than a tech or nurse who messes your arm up now. 

But I am scared! I mean,.. how do you stop the fistula from rolling away from the sharp?? That is my main problem!!

Do you use a tourniquet? Can the nurse hold the area for you? I know you're scared Angie so was I when I first stuck myself but I found out how easy it was since I controled the pain. The best advocate is yourself because no one will care about you as much as YOU will. Are you worried you will mess something up?

[angieskidney]

The problem is that no one on the shift I am on does buttonhole. I would need to change shifts and they say there is no spot right now. And the spots on my fistula are limited.

I wish I had an advocate to help me make people listen to me in my unit The new social worker is not as good as the old one

Angie did you read my post? I said you do it! You don't need a nurse, there is nothing to it. You just stick a sharp in the same spot about 7 to 10 times in the exact angle and then you use blunts. They already have the blunt needles, so you just demand that YOU will be starting the buttonhole. You won't do any worse than a tech or nurse who messes your arm up now. 

But I am scared! I mean,.. how do you stop the fistula from rolling away from the sharp?? That is my main problem!!

Do you use a tourniquet? Can the nurse hold the area for you? I know you're scared Angie so was I when I first stuck myself but I found out how easy it was since I controled the pain. The best advocate is yourself because no one will care about you as much as YOU will. Are you worried you will mess something up?

Yes! I am afraid I will bleed all over the place. Yes, I use a tourniquet.

[Epoman]

The problem is that no one on the shift I am on does buttonhole. I would need to change shifts and they say there is no spot right now. And the spots on my fistula are limited.

I wish I had an advocate to help me make people listen to me in my unit The new social worker is not as good as the old one

Angie did you read my post? I said you do it! You don't need a nurse, there is nothing to it. You just stick a sharp in the same spot about 7 to 10 times in the exact angle and then you use blunts. They already have the blunt needles, so you just demand that YOU will be starting the buttonhole. You won't do any worse than a tech or nurse who messes your arm up now. 

But I am scared! I mean,.. how do you stop the fistula from rolling away from the sharp?? That is my main problem!!

Do you use a tourniquet? Can the nurse hold the area for you? I know you're scared Angie so was I when I first stuck myself but I found out how easy it was since I controled the pain. The best advocate is yourself because no one will care about you as much as YOU will. Are you worried you will mess something up?

Yes! I am afraid I will bleed all over the place. Yes, I use a tourniquet.

Well I can't help you then because that is just non-sense. I didn't realize you had a fear of needles and or blood. How are you going to bleed all over the place? unless you pull the needle out and not have gauze in place. Maybe buttonhole is not for you then because Ideally the patient should learn to stick him or herself that way the same angle of insertion is used every time. If you have different techs/nurses sticking you then that is not good for the buttonhole. It is very important that you use the same angle of insertion every time so as not to damage the scar tissue that has formed. because the track of scar tissue that develops with a buttonhole is a good thing. One day when you stand up for yourself and get to use the buttonhole technique you will look back and thank me for pushing you and wish you had done so much sooner. 

[angieskidney]

I didn't realize you had a fear of needles and or blood. How are you going to bleed all over the place?

I don't have a fear of blood but maybe am intimidated by stabbing myself with a large needle in a major vein (Fistula) where if I do it wrong would not be good...

I would rather be taught before I just go ahead and guess my way through cannulation

[Epoman]

I didn't realize you had a fear of needles and or blood. How are you going to bleed all over the place?

I don't have a fear of blood but maybe am intimidated by stabbing myself with a large needle in a major vein (Fistula) where if I do it wrong would not be good...

I would rather be taught before I just go ahead and guess my way through cannulation

Angie do you watch the techs when they stick you or do you look away? I promise you will not hurt your fistula, you may infiltrate it but you can use a 5cc syringe to check to see if it is infiltrated and adjust the needle before you hook yourself up to the machines. I hope you are not offended by me talking to you this way, it's just that I see how often they hurt you and I know it would be so much better if you stuck yourself.

How about this? What if you ask one of the nurses who works the shift that does buttonholes, if he/she could come in just for 10 minutes in the evening to teach you the technique. What if you plead with that nurse maybe offer them a nice home cooked dinner or a few bucks to at least pay for their gas in their car. It would only have to be about 7-10 times (I used blunts after the 5th sharp, everyone is different) They would only have to be there for the "put on" as the "take off" procedure is the same whether it's sharps or blunts. OR maybe one of the buttonhole nurses could teach one of the "late" crew. It really is nothing to learn. Again I hope you are not upset by my posts I am just trying to help you. 

[angieskidney]

I didn't realize you had a fear of needles and or blood. How are you going to bleed all over the place?

I don't have a fear of blood but maybe am intimidated by stabbing myself with a large needle in a major vein (Fistula) where if I do it wrong would not be good...

I would rather be taught before I just go ahead and guess my way through cannulation

Angie do you watch the techs when they stick you or do you look away? I promise you will not hurt your fistula, you may infiltrate it but you can use a 5cc syringe to check to see if it is infiltrated and adjust the needle before you hook yourself up to the machines. I hope you are not offended by me talking to you this way, it's just that I see how often they hurt you and I know it would be so much better if you stuck yourself.

How about this? What if you ask one of the nurses who works the shift that does buttonholes, if he/she could come in just for 10 minutes in the evening to teach you the technique. What if you plead with that nurse maybe offer them a nice home cooked dinner or a few bucks to at least pay for their gas in their car. It would only have to be about 7-10 times (I used blunts after the 5th sharp, everyone is different) They would only have to be there for the "put on" as the "take off" procedure is the same whether it's sharps or blunts. OR maybe one of the buttonhole nurses could teach one of the "late" crew. It really is nothing to learn. Again I hope you are not upset by my posts I am just trying to help you. 

I am not upset. Just felt a bit pushed when I already feel like my options are limited. I am going to try all the options at my disposal and beyound on Monday morning before I even go into dialysis because I am hoping to talk to the head nurse who does know buttonhole and is in charge. Maybe I can change to the earlier shift if I talk to her. Then if that fails I will talk to the Nephrologist or the surgeon about my catheter removal date and try to delay that and explain why.

A lot of things on my mind and sometimes I feel I have no one on my side. I used to be able to turn to my old social worker but now that this new one got her spot because of seniority, I am none to happy.

I have never stuck myself with any needle other than the short subcutanious Eprex needles and even that it took me a year to get over my fear. I wish I could be as fearless as you. But I also know my luck... 

[Jaybird]

I am also new to dialysis. I found out I had kidney problems 3 years ago and put dialysis off until last month. My first week of dialysis was a living hell. I infiltrated 3 out of 5 days and my entire forarm was swolen and I couldnt move it. It is still purple and blue in spots, and its 3 weeks later!

Anyway, my doctor was discusted with the inpatient dialysis at the hospital and refered me to a Home treatment center. I started there 2 and a half weeks ago and they are firm belieavers of the "Button Hole" technique! LUCKY FOR ME! They started developing my button hole the first day I arrived and within the first week I had an established button hole on my fistula. 2 weeks into it I started sticking my self. I've been sticking my self with 15 gage blunt needles for the last 3 days and it is WAY EASY! I missed one time in 3 days and I just had to backup a little and aim straight and I got it. It hurts less and I havnt had an infiltration yet.

And get this, tomorrow I will be taking the machine home and begin doing it on my own schedule in my own house with my wife as my partner. One month into dialysis and I am sticking myself and spinning my own blood tests in a centrifuge. Its crazy but true.

I still hate dialysis, but home dialysis with the button Hole is the way to go.

- Jaybird

[Zach]

Hey Jaybird!  That's great ... keep the strong attitude.
 

[Black]

I am also new to dialysis. I found out I had kidney problems 3 years ago and put dialysis off until last month. My first week of dialysis was a living hell. I infiltrated 3 out of 5 days and my entire forarm was swolen and I couldnt move it. It is still purple and blue in spots, and its 3 weeks later!

Anyway, my doctor was discusted with the inpatient dialysis at the hospital and refered me to a Home treatment center. I started there 2 and a half weeks ago and they are firm belieavers of the "Button Hole" technique! LUCKY FOR ME! They started developing my button hole the first day I arrived and within the first week I had an established button hole on my fistula. 2 weeks into it I started sticking my self. I've been sticking my self with 15 gage blunt needles for the last 3 days and it is WAY EASY! I missed one time in 3 days and I just had to backup a little and aim straight and I got it. It hurts less and I havnt had an infiltration yet.

And get this, tomorrow I will be taking the machine home and begin doing it on my own schedule in my own house with my wife as my partner. One month into dialysis and I am sticking myself and spinning my own blood tests in a centrifuge. Its crazy but true.

I still hate dialysis, but home dialysis with the button Hole is the way to go.

- Jaybird

Dang, that was a tough way to start, but congrats on the buttonhole and home training.

[Joe Paul]

Have them decrease your heparin, trust me I have had the same problem through out the years. OR you can have them place a 2x2 gauze on top of the needle site, THEN tape it in place and the gauze will slow down the bleeding greatly.

Mine bleeds, this is exactly how they "fix" me.

[angieskidney]

In a couple days I start Buttonhole!!!!! 

[kitkatz]

Okay Angie, whose ass did you kick to get buttonhole, finally.?  Good luck with it!

[angieskidney]

Okay Angie, whose ass did you kick to get buttonhole, finally.?  Good luck with it!

I bypassed my shift and called the morning shift and said "I FEEL I SHOULD HAVE BUTTONHOLE given my current state of my fistula with the scar tissue I am developing" and she said she would talk to some people. Next thing I know they are showing me the vid and scheduling my buttonhole and gave me a buttonhole nurse! YAY!!! 

[Black]

Congrats!!   Let us know how it goes.

[vandie]

Way to take the driver's seat, Angie.  Keep us posted.

[Epoman]

Okay Angie, whose ass did you kick to get buttonhole, finally.?  Good luck with it!

I bypassed my shift and called the morning shift and said "I FEEL I SHOULD HAVE BUTTONHOLE given my current state of my fistula with the scar tissue I am developing" and she said she would talk to some people. Next thing I know they are showing me the vid and scheduling my buttonhole and gave me a buttonhole nurse! YAY!!! 

FINALLY, good job now keep us updated and besure to give a lot of details so others can learn from you.