Access problems.

[Adam_W]

The last few days I've been having a lot of excessive bleeding from my graft during cannulation, needle pulling, and now today, at the end of my treatment itself (blood was seeping out around the venous needle). The graft also feels a bit more "mushy" then it used to feel. My nurse said she thinks it might be more stenosis, but I also have the concern that it is weakening. I rotate my sticks the way I was trained to do, but I'm also using it twice as often as most grafts (six days/week vs. three). The earliest I can have someone look at it is Monday, and I have to dialyze tomorrow because I just took my day off. If my graft is weakening, I'm concerned that something bad could possibly happen the next time I stick it. I don't know what to do.

Adam

[Sluff]

Wish I could help you Adam, hope it will get you through until It gets looked at. My thoughts are with you. Hopefully someone can help you out.

[donnia]

Dang Adam, I wish I could help you but I have no idea.....  Thoughts and prayers are with you!  Please let us know what you find out!

[Roxy]

Sorry you're having a hard time with the graft Adam. Did the nurse give you any suggestions? Can you go to the hospital and have someone on call look at it? I hope it gets figured out for you and everything is okay. 

[Adam_W]

I did consider going to the ER, but more likely than not, the ER doc wouldn't really know what he's looking at.

[kitkatz]

Unless the graft stops working do NOT got to the ER. That would be useless, since they would just call a vascular surgeon consult in anyway and that would take hours. 

[Sluff]

Can you skip dialysis until tommorrow? Is this even an Option? until you can speak to a Doctor? Just an idea.

[angellady07]

I hope your graft situation improves. Take care.

[Black]

Adam, what's going on?  How are you?

[Adam_W]

Adam, what's going on?  How are you?

Well, I'm more frustrated than ever now. I wasn't able to be seen by the "access experts" at the kidney centre, and the earliest I can be seen is Thursday morning. Since I take Wednesdays off, I only have one more treatment to get through until then, but if it's anything like today's treatment, it won't be good. I reluctantly started to do my treatment, and when I put my arterial needle in, I basically had a geyser of blood squirt me right in the face (I looked like I had just come from a murder scene). I was so startled by that I jerked the needle out and of coarse more blood sprayed. I got the bleeding stopped, got myself under control, realized I have no choice but to do my treatment, and stuck again. That time it went in ok, but there was still quite a bit of blood coming up around the needle. It was the same with the venous needle. Once I got on and settled down, I called my nurse and told her what happened. She suggested I go to the ER, but I know that if I go to the ER, there most likely won't be anyone there who can do anything other then tell me "yup, that's a dialysis access, alright". I'm really afraid to do my treatment tomorrow, and I'm frustrated that I'm not being taken seriously. I mean come on, I GOT SPRAYED IN THE FREAKING FACE WITH MY OWN BLOOD! The nurse that actually did my NxStage training was one of the best, but she moved on to a different centre. The two nurses right now that are in charge of the home program are both some of the nicest people you'd ever meet, but I just don't think they have the skills that the old nurse had. I literally don't think they realize how seriously this is developing. I've had the thought of walking into the ER, and telling them that I'm not leaving until they put a catheter in me so I can SAFELY dialyze. They are going to do another fistulagram on Thursday, and I'm not going to ask for any sedative because I want to be fully conscious and alert so I can see and know EXACTLY what they find.  If I survive, I'll post how things turn out. 

Adam

[Black]

Oh, Adam, I am so sorry.    I hope you get through until your appointment okay.

I can't imagine going through any access procedure without any sedative but I greatly admire your resolve and courage.  Hang in there.  I know what it's like to be surrounded by very nice but incompetent medical professionals who are far more ignorant than they should be.    Sometimes we just have to insist on good care and answers. (Where's that icon of kat's big stick?)  Oh well, this will have to do. 


I have read that it is often possible to put in a natural A/V fistula in the vein above the graft, if the graft fails.  Have you read anything about that?  If I were you I'd ask the vascular surgeon about it and do some on-line research before, so you kind of know what to ask and if it is indeed likely to work.  Of course, I am assuming that your graft is in your lower arm.  Might be nice to get a break and use a cath while a new fistula heals. 

Please keep us posted and let us know how you are doing.

[Adam_W]

Oh, Adam, I am so sorry.    I hope you get through until your appointment okay.

I can't imagine going through any access procedure without any sedative but I greatly admire your resolve and courage.  Hang in there.  I know what it's like to be surrounded by very nice but incompetent medical professionals who are far more ignorant than they should be.    Sometimes we just have to insist on good care and answers. (Where's that icon of kat's big stick?)  Oh well, this will have to do. 


I have read that it is often possible to put in a natural A/V fistula in the vein above the graft, if the graft fails.  Have you read anything about that?  If I were you I'd ask the vascular surgeon about it and do some on-line research before, so you kind of know what to ask and if it is indeed likely to work.  Of course, I am assuming that your graft is in your lower arm.  Might be nice to get a break and use a cath while a new fistula heals. 

Please keep us posted and let us know how you are doing.

My graft is actually upper arm, so I don't think the "fistula-graft" (or would that be called a "graft-ula"  ) would be an option. They have never done vein mapping on my right arm, so if I end up needing a new access, maybe the veins in my other arm will be big enough for a fistula. Then there's always the option of a leg access (even though I would hate that). As for your comment about an icon for Kitkatz's "big stick", we need something like that. No one messes with "The Kit" 

Adam

[Sluff]

That really sucks Adam, If they are not taking you serious then you need to do something drastic, like walk into the doctors office with a bomb strapped to yourself. Then they will take you serious. but then again what if they don't? mmm forget that Idea it just seems no matter how a person feels the medical profession these days has just gotten desensitized.  Good luck Adam, let us know how it works out.  ( leave the fertilizer home tho OK?)

[AlasdairUK]

Hi Adam,

I have a fistula rather than a graft, do you thin your blood to make sure that your graft does not clot? If so, is your blood too thin?

I know it is a very simplistic solution and we are not normally that lucky. I hope you come to the bottom of it.

[skyedogrocks]

Have you talked to your Neph?  He/She should be able to set you up with a vascular doctor to check out your access.  If you can't dialyze today, don't do it.  I'm sure you can do 5 days this week if you have to.

Rob has had a year of issues with his fistula, so he had a new one put in his upper arm, however he hasn't used it yet.  He keeps getting clots in his lower arm one, he even had his dialysis nurse come out last night to put his venous needle in.  His nurse is off for a week, but next week she is going to start sticking one needle in his upper arm access.

Good Luck.

[paddbear0000]

Adam, I'm so sorry about your fistula. You are in my thoughts and prayers. I vote for going in to the ER and giving 'em hell!   

[Adam_W]

I just finished my treatment today, and even though I had another spray of blood, I survived it. I haven't pulled my needles yet, but I didn't have any trouble yesterday because I just held the gauze and my partner actually pulled the needles, enabling me to get pressure directly over the site immediately instead of twisting and turning my fingers around while pulling the needle. Tomorrow is my day off, and my appointment to get this fixed is early Thursday morning, so the next time I dialyze, hopefully this problem will be fixed. I'll let you all know what happens.

Adam

[Rerun]

 

[Sluff]

I just finished my treatment today, and even though I had another spray of blood, I survived it. I haven't pulled my needles yet, but I didn't have any trouble yesterday because I just held the gauze and my partner actually pulled the needles, enabling me to get pressure directly over the site immediately instead of twisting and turning my fingers around while pulling the needle. Tomorrow is my day off, and my appointment to get this fixed is early Thursday morning, so the next time I dialyze, hopefully this problem will be fixed. I'll let you all know what happens.

Adam

Hope it is an easy fix Adam.

[Roxy]

How's your graft? Was the doctor able to fix it? Hope everything's going well. 

[okarol]

Hey Adam -
How are you doing?
Hope things have improved.
 

[Adam_W]

Well, I thought everything was fine with my access, but now it's worse than ever. I went to get on the machine this morning, and I had to pull my venous needle and re stick because I got it in at a bad angle. When I pulled the needle, it just kept bleeding and bleeding and wouldn't stop. After holding it for over 40 minutes and it still not stopping, I had one of the friends I was with call 911 and I went to the ER. The ER doctors finally got the bleeding stopped, but now my graft is completely dead. I don't think it was from excess pressure, because I showed the EMTs and the ER doctors how much pressure to put on the graft, but I haven't felt a thrill since this started. I'm supposed to hear from the kidney institute tomorrow morning, and hopefully I'll be able to be seen right away. I didn't dialyze today, so I need to have some kind of access, even if it's a catheter, so I can dialyze tomorrow (my body is accustomed to 6 day/wk dialysis). What made things worse, I was visiting with friends in another town so I was completely unfamiliar with the hospital, and I was 100 miles away from my dialysis nurses and my vascular surgeon. Plus, it ruined the good time I was having with my friends. I'm kind of discouraged right now.

Adam

[angela515]

  Adam.

Hope everything gets straightened out soon.

[Amanda From OZ]

Gees Adam sorry to hear your having such a a crappy time with your fistula. I hope it gets sorted out quickly. Keep us posted. 

Amanda
xxoo

[goofynina]

Geeze, i tell ya Adam, if its not one thing its another huh buddy?  You just hang in there and hopefully they are getting things working right again.  Sorry that had to mess up your visit with your friends though.  Take care and keep us posted on how you are doing ok,