Starting dialysis!!

[Shrinkydink]

Haven't posted in quite some time...figured it's time to update a few things.  Finally got really tired of being sick and tired all the dang time!  Told my neph...I GIVE UP!!!!!!!!!!  I just can't take the pain NO MORE!!!  My GFR was 17ish and something needed to be done.  My fistula (aka YUM YUM) is looking so good!!  I am BEYOND ready to start my dialysis and hopefully feel better!!  So I was handed over to the dialysis neph and started seeing her. First time I went into her office I told her I am beyond ready!!!  Within less than 2 weeks my GFR dropped to 13...and she told me I was almost there and to hang on for two more weeks.  I told her I was not going to take NO for an answer.  I would have to of strangled someone by then.  She went to talk w/another dr and got the approval for me to start!! My first dx was on April 27th and I was super stoked to get in there and start already!!  I went in, got weighed and headed for my seat...then panic set in...I wanted to run out of there so fast it wasn't funny!!!  I started to cry, and the nurse told me it was going to be ok. I gathered my wits about me, as I don't like anyone to see me cry.    I was only going to be on for 2 hours...used the 17 gauge needles and got it on the first stick!!! YEAH!!!    I returned on Monday April 30th, going for 2.5 hours that day...took them 3 tries to get top needle in as it infiltrated. A total of 4 sticks and it was finally working...hurt and left me bruised...returned May 2nd...went in w/happy thoughts and hoping all would go right today!! They got the bottom needle in w/o problems...tried 4 times to get the upper one to work, but it infiltrated all 4 times    and since it wasn't going to work they sent me home to come back the next morning.  So now I am at the point to needing a back up plan!  What happens if my fistula does not take???  Anyone else having/had this issue and how did you handle it?  Need some input...as I don't want to keep leaving there battered and bruised.  Thanks for any input/help!!

~~GG~~
Battered n Bruised

[smcd23]

Hi! My significant other had issues with AV fistulas and he is now on PD.

He had his first fistula put in around May 2008. It never took, but it was in his wrist and I guess they don't always take. So then in July 2008 they did another one in his left arm. It worked in the hospital, but when he went back a few days later for a check up, it was a no go. So then I donated my kidney to him to try to avoid dialysis all together and he clotted off the kidney so it never made it out of the hospital. Then Thanksgiving 2008 they did his 3rd fistula in his right arm. They got it to work with blood thinners. It pumped away happily until May 2009 when he started hemo.

He had an awful time at hemo. He infiltrated A LOT, like once a week. Oh, did they give you the lidocane cream? If not, ask for it! It makes things a little more bearable. He had a revision on his fistula about 3 months later to try to stop the infiltration. They took a splice of vein from his ankle. That made little difference, still kept infiltrating. He has bad veins apparently.

So he decided to go with PD in January 2010. Would PD be an option for you? Or even an AV graft? Then they'd be sticking you in the graft piece and not your vein. But they are more likely to clot (which is why my SO couldn't do a graft, he's a clotting machine). With PD the only pain is the occasional "drain pain" and the surgery from the catheter placement. And if you get peritonitis, that is very painful, but that can be prevented.

Hang in there! You'll get it figured out! I love your enthusiasm and positive outlook  You will get it under control, it's a learning process, some trial and error, too.

[justjen321]

Hey shrinkydink!

It doesn't sound like your fistula didn't 'take'. It sounds like you are having fairly normal early issues with a new use fistula. They are all different, no two are the same, and the nurses are not yet used to your particular fistula.

We just trained to do hemo at home for my husband, and the training was the first time we'd used his fistula. I remember the nurses fussing with his needles, and thinking 'If THEY struggle with them, how will I ever do this at home?" And here we are now, doing it at home. It hasn't been that long that I've been doing his needles, and already it's SO much easier than I thought back in the beginning.

We created 'buttonholes' and I'd recommend once your nurses figure out the best places to stick you, you ask them about those. It makes the process much less scary.

Good luck, keep your chin up. The beginning is hard, scary, and incredibly frustrating. Relax as much as you can and realize you WILL get through this, and it WILL get better.

Jen

[bansix]

What do you mean by button holes?
Only 2 out of 10 technicians at my center can stick me without having an issue. I always dread the days they aren't scheduled on my shift.
I love travelling more than anything, but because of this I haven't been able to travel since, cause unless the technician is already familiar with my arm, they will surely mess it up. So I'm scared to go to a new facility.
I'm also afraid of going to far because I have to have a fistualgram atleast once a month

[justjen321]

@bansix - Check this link out for a more detailed explanation: http://www.fistulafirst.org/LinkClick.aspx?fileticket=aM7Q86GDN-w%3D&tabid=105

It's really important to note that if you have a graft, versus a fistula, you cannot use buttonholes.

Essentially, buttonholes are formed by the same nurse sticking the exact same location every single time your fistula is stuck. It creates a 'tunnel' or 'track' much like the holes in the earlobes of someone with pierced ears. The vein below it also forms a 'trapdoor' so you can actually use dull or blunt needles. They make them specifically for those who use the buttonhole technique.

It took us quite awhile to create my husbands buttonholes, but now that we are home and using them, they are amazing. Blunt/dull needles are much, much more difficult to cause an infiltration with, so there's less fear associated with that, AND you can move about more. If you have a fistula, talk to your neph, or the staff at your dialysis clinic about it. You won't be sorry.

[justjen321]

Also, depending on the location of your fistula, it might be a really good idea to learn to self cannulate. My husband cannot, because of vision and neuropathy issues, but those who self cannulate are far less likely to infiltrate, in my opinion, because they can feel the entire process.