Fistula Infiltrated

[PKDSTGV]

Alright, I understand that I'm a complicated person and back in the day, I use to take that as a compliment, however, I'm just about fed up with the complications I've dealt with during this whole renal failure process! It was bad enough to find out I had high antibodies, then the decision was made to place the fistual.....a process I swore I would never have to go through and now, after my first two times in the chair, I've been infiltrated three times!!!!

I feel bad for the staff and my neph, they're all just beside themselves over it.......but my upper arm looks like it's been ran over by a Mack truck!!! I look like I'm a body builder, but only on the left side! It's ridiculous AND painful. Today, they infiltrated me twice and we all agreed enough was enough, so I went home without dialyzing.

I'm schedule for a fistulagram tomorrow (it was scheduled last week BEFORE I started dialysis). They say I have a small branch stealing from the fistula and they're gonna fix it. My clinic manager thinks I might need an angioplasty......they both are saying my venous pressure was too high on Monday so who the flip knows!  All I know is that I'm not looking forward to anymore trauma in this left arm and tomorrow's not gonna be fun! Then back to the chair on Friday to see how that goes! Of course there's the added worry that they might want me to rest the fistula for a while and place a cath for the short term. I don't want a cath....those things are dangerous.....but I need to dialyze so once again....who the flip knows!

I know my access is new and untested and so I've cut them some slack on that point. And, to be fair, she did a good job today getting the arterial line in, it was the venous line (twice) that infiltrated and both times was AFTER she got blood back without resistance. As a matter of fact, the first stick went in okay (felt a little weird, but my arm's a mess from the infiltration on Monday so what do I know?) she got good blood back, flushed with saline, no problems, pushed the heparin, no problems, turned on the machine and BAM! infiltrate! The second time, good blood back but resistance when she tried to push it in....wiggled around....same thing.....scratching our heads and BAM! infiltrate again!!!

Anyone with this experience who can give some encouraging words? 

Tami

[Rerun]

Ohhhhh Owwwww I'm so sorry.  Sometimes the new fistula has to toughen up and it may take some time to rest it and use it and rest it and use it.  I know you don't want the catheter but.......  It may be best for a little while.  But, I'm a wimp and don't like the drama.  I'd rather have the cath as a back up. 

This whole thing sucks and I'm sorry and I do understand.  FIALLY (knock on wood) my access is cooperating.

Best wishes for tomorrow.

     

[willowtreewren]

 

So sorry! 

New fistulas are troublesome until they mature from use. I wish it were easier for you.

 

Aleta

[monrein]

A new fistula can be a finicky and ridiculous thing.  Most of us have infiltrated more than once at the beginning and it's definitely not pretty to behold.  I hope yours will settle down soon and one great thing is that your team seems to care and are concerned.  Small needles, slow pump speed to start with and that can help till it toughens up.  Hopefully the vascular surgeon can correct the flow issue.   

[sullidog]

I had a lot of trouble with my graft which is like a fistula but an artificial vein. Well finally I switched surgeons, and they ended up instead of doing the fistulagrams, decided to surgically go in and see what was going on. I ended up having a catheter for a month while the graft rested and healed from the surgery, but in the end it was the best thing that they ever did! He ended up redoing the graft without actually putting in a new one, dug out the old tissue, etc.

[woodsman]

I can relate....

[PKDSTGV]

Thanks for the replies. My fistulagram is scheduled for 1:00 today (no eating or drinking until then, yeah for me!) so hopefully we'll get this fixed. I used a heating pad on it most of the night and it does feel better today, doesn't look too pretty, but that's the least of my worries. My arm is so swollen that yesterday I took off the paper tape and two x two that was on all of my puncture sites and tore my skin!!! My oldest daughter was like, "What? Only OLD people get skin tears!".....ya, tell me about it!

All I can do is sigh and be grateful that there are people here who've been through what I'm going through, thanks everyone! Hopefully I'll be able to report some positive news tonight or in the a.m.

Have a great day!!!

Tami

[boswife]

Bless ya Tami and all the best for todays procedure..  DAng sorry you have to go through it but hopfully, this will streghten it all out!   

[Lindia]

Hi Tami --  I hope its going better -   

[PKDSTGV]

Hello! I just wanted to update everyone....sorry it's taken me so long but I was having a low speed come-apart and needed to pull myself back together before posting again.

As you know, my first clinic infiltrated my fistula three times in two days. Last Thursday I went in for a fistulagram and the surgeon took one look at my arm and said no surgery! They placed a tunneled catheter (yeah for me, frightening as hell having that thing) and said rest the fistula until we look at it again next Tuesday (8/30). So, I went home cried myself to sleep, woke up the next morning, quit my initial clinic and got in with the clinic that my long-term neph wanted me to go to (should have listened to her in the first place).

The surgeons OR tech told me it was the worst infiltration she had ever seen (this coming from someone who was a dialysis tech for years) and that feeling was substantiated when I started at my new clinic on Wednesday. No one there had seen anything like what I had experienced and no one could understand why they didn't rest my fistula after the initial infiltration.....I don't know why either.......I'm just glad that I seem to be at a clinic that knows what they are doing. It's owned by the neph doc's themselves, not a corporate group, and they round every week. They all seem very knowledgeable and they have the full faith and credit of a major University and Hospital System behind them so I feel like I'm in much better hands.

The swelling in my arm has gotten much better. I still can't straighten it out all the way and I'm trying not to baby it, but man it hurts. The docs are saying it's like a biceps tear.....blood in the muscle tissue is NOT a good thing.....and that it will take time to heal.  I just wish it would get better more quickly because I can't stretch my arm out of the car window to get my morning Starbucks!! LOL

Anyway, my fistulagram is rescheduled for Tuesday and I'm hoping that goes well. I'd like to have this cath out as soon as possible because it really freaks me out....and yes, I'm a nurse, but it's different when you're the patient.....they're not going to pull it until I've dialyzed successfully with my fistula at least three or four times and I can't do that until the surgeons say it's okay.....so, that's my update. I hope everyone has a wonderful weekend!

Tami

[willowtreewren]

 

I'm so glad that you changed clinics! 

It sounds like you will be in much better hands. That will make a world of difference!

I wish you had not had to go through this. 

Here's to smooth sailing now.

Aleta

[mcclane]

hang in there !  i'm going thru the same thing right now, it is a long process go get that fistula up and running. 

[boswife]

im Soooooooo glad you transfered and it sounds like a great place.  Thanks for updating.  Makes the weekend that much better   Have a good one yourself..   

[MooseMom]

Thank you so much for the update; I've been really concerned about you and have been checking this thread continously.

I have to tell you a sorta funny story which will illustrate how much you've been on my mind.  When I first read about your situation, I was just horrified, and I told my husband about it.  I was really freaking out because your story, in a nutshell, illustrates what I am frightened of...that you can do everything in your power to look after yourself and advocate for yourself and educate yourself but that one single person can come along and really screw you, and you have no control over it.  I banged on and on about this for days. 

A few days ago, I asked my husband if he wouldn't mind calling up the social worker at the clinic I will be going to once I begin dialysis/nxStage training.  I've talked to her before, and so has my husband, but this was a couple of years ago, and I wanted to see if any of their policies had changed.  I also had some general questions, but my courage failed me...it just was not a phone call I was ready to make yet.  So my husband offered, and I gave him a whole list of questions to ask.

He remembered my freaking out over your infiltration story, so he asked the social worker something along the lines of, "How often do you infiltrate people?"  The SW got really dubious and cautious and asked, "Why do you ask?"  He replied that I've had a long time to research dialysis and that I talk to all sorts of people online and hear the horror stories.  She made some noise like, "Yeah, OK, what has she heard?"  Anyway, she went onto say that only certain people will be allowed to touch a new fistula and that they can begin buttonholes immediately and start teaching me how to do it.  My husband said they all sounded supremely confident, but we'll just have to wait and see.  She said that in their clinic, infiltrations are very rare (she WOULD say that, wouldn't she!) but that yes, they DO happen, but it doesn't mean the fistula is destroyed.  Well, I knew that, but I kept thinking of your story!  I am so very sorry that you've had to go through this, but I am very grateful that you told us about it so that we can be doubly wary, and I am very glad that the general consensus is that your fistula will be OK in the long run.  Good for you for changing clinics, and I'm happy that your vascular surgeon is keeping a very close eye on you.

[PKDSTGV]

MooseMom,

I'm so sorry for making you wait so long for an update! I had to come to terms with this situation and it took me longer than I expected. To be honest, I didn't quit crying until last Saturday and then by Monday, I had a new plan in place and was charging ahead. Everyone, and I mean everyone, that I have seen and who have accessed my fistula, say it is beautiful and they are so dumbstruck as to HOW it was infiltrated three times in such a short period of time! That simple fact only reinforces my belief that it was a technique issue with the staff at the other unit and that the fistula itself, is exactly as it should be.

The one thing I've learned from all of this is that after the first infiltration.....as bad as it was.....the fistula should have been rested. The general concesus from the staff at the new unit is that when they attempted to re-enter the fistula on the second dialysis day, they inadvertently were pushing the needles through old, clotted blood. These tiny clots and debris was enough to cause the second and the third infiltrations. Now that's not a proven fact, but it's the most logical, scientific and reasonable explanation for what happened to me. They should have known to rest my fistula for a week before trying to access it again.

In the end, it has been a learning experience for me....an emotionally and physically painful experience, but a learning experience none the same. I have had to come to grips with the fact that there are more things than I care to admit, out of my control, when it comes to this damn disease and the havic it has reeked on my body. I hate that....but it is what it is.

Moving forward, I am hoping to have my access up and running again soon. The new unit is also going to start on buttonholes right away and that makes me feel even better about eventually accessing myself. (I have to admit after what happened the idea of me doing my own needles became extremely frightening!)

Once again, I'm sorry that you were so worried and I'm sorry it took me so long to post an update. I hope you have a great weekend!

Tami

[MooseMom]

Oh jeez, you don't owe me any apologies.   I'm just glad you are OK.

"Loss of control" is a huge issue for anyone with a chronic disease.  I think most people, healthy or not, go through periods in their lives when they feel so out of control.  But I think that you are taking charge in the very areas where you CAN exercise control...you changed clinics, you learned from the experience and you are thinking about self-cannulation (the ultimate in grabbing control!).

I know you may not believe it, but the people who do self-cannulation feel that they are much less frightened and that it hurts much less than when someone else is doing it.  Most will tell you that that was the biggest psychological hurdle, getting over that fear of needles, but when you know that the reward is so great and that this will HELP your body and GIVE you back that control, the fear becomes less of a factor.

I don't know why, but I don't really fear the needles.  When I think about what it is about dialysis that scares me, the answer I come up with has nothing to do with needles.  I fear becoming disabled.  I don't want my life-giving treatment to disable me.  And the surest way to avoid disability is to get frequent dialysis, and the surest way to get frequent dialysis is to do it at home, and the surest way to be able to do it at home is to learn to self-cannulate.  So, you are definintely on the right track now.

There's nothing wrong with crying until Saturday as long as you have a new plan in place and are charging ahead by Monday.  Sometimes you have to just let yourself do the grieving you need to do so that you can rid your soul of that particular poison and move on!  So, good for you!

[monrein]

Cannulating through bad swelling from a previous infiltration...   just makes me want to smack somebody.  I think you're very wise to change clinics.  Infiltrations can and do happen but your particular experience sounds, well, simply nuts.   

[Stoday]

Good to hear that you're on the mend. Nearly all newbies have a hard time when their fistulas are first used. Sounds like you got more than your fair share of bad cards.

In six months' time you won't have the problem of getting the occasional infiltration.