Problem with fistula

[jerseyjezebel]

I am having so many problems with my fistula, it's not even funny.  When I first went into kidney failure, they had to put in an emergency perma-cath.  That was back in December, and I'm still using it.  They first tried putting in a fistula 2 years ago in my left arm.  It failed, but I have a nice scar running along my arm from the elbow to wrist.  Then they tried putting it in my right arm.  It worked, but apparently it was too deep to use, so I had to undergo another surgery to raise it.  Now I have 2 scars on my right arm, one by the wrist where they considered putting it but didn't, and one running from my elbow to my underarm.

Last week I went to the cardiovascular surgeon for my post surgery checkup.  They did an ultrasound and everything seemed to be running ok, but they wanted me to come back for a fistulagram.  I had it done on Thursday.  After the procedure the nurse told me that they couldn't really do all they wanted to because my arm was swollen.  I don't know if this is because of my rheumatoid arthritis or what...she said she didn't think so.  Now I have to go back in a month to do it all over again.  While I was recovering from the procedure the nurse came by and put her hand on my fistula, I guess to feel the thrill.  She looked concerned and called another nurse over.  She felt for the thrill, and then the two of them went into another room to talk.  When the nurse came back I asked her if something was wrong and she said that my veins are really small and narrow and they may not be able to use the fistula. 

I have been so upset since Thursday.  What am I going to do if they can't use this fistula??  I can't keep using the perma-cath, they said it gets infected really easily.  I'm so scared!

Has anyone else had so much trouble with their fistula?

[boswife]

You precious heart.. Im so sorry your having to go through all this.  I honestly, at the start of all this for hubby, thought that it was all just so routien and no one had problems, it just worked.  I guess for only that reason, im glad i was kinda ignorant to what was to come.  We've had it great compared to so many others and still, we hate dialysis!!     I hope things come together for you soon, and this is all behind you.  I wish you well 

[jbeany]

Things to keep in mind:

Fistula problems are common as house flies, and yet I've never heard of anyone who had a doc tell them that ahead of time.  Why?  No clue.  Maybe some nonsense about the power of positive thinking and not borrowing trouble - although I've never yet seen a positive attitude make anyone's veins grow....

The nurse who told you the veins are too small is NOT a tech.  Some of them are amazing, and can stick almost anything.  Don't write it off until it clot offs and can't be pumped back open.

You can exercise it to make it bigger.  If they haven't worked with you on how to do that, demand it!

If your veins are still too tiny, then they use a graft.  They don't last as long, but they do work - that's all I ever used.

As for not being able to keep using a perma-cath.  Well, until they figure out something else, you certainly can.  Is it a higher risk?  Yes, of course.  On the other hand, trying to stay alive on dialysis is a risk we take because we have no other choice - and plenty of us manage it!  The next time some fool of a nurse or doc gets pushy with you about that, just ask them to get out their magic wand and make your fistula function.  (Remember, sarcasm is a common side effect to all chronic illnesses, because it helps you survive!)

[obsidianom]

I posted elsewhere the same message. If the local vascular surgeon cant get your fistula working, go elsewhere to a bigger teaching type hospital. My wife and I did that as her veins are VERY small. The guy here was so negative about making the fistula work that we went 100 miles to a bigger teaching hospital and got the top vascular surgeon to do it. He had to do a second procedure to widen it after it matured for a few months and was still too small. He put in a natural patch made of her own vein material to widen it by a huge amount and now it works great. We have 2 great buttonholes and have used it now for 3 months with no issues at all. She used a catheter for 9 months before this and had no problems, so dont worry about that as long as you keep it clean and are careful with it.
Check out the teaching hospitals around your area and ask for the best vascular surgeon who SPECIALIZES in fistulas. Ask the nephrologists who they all use . We went out of state to Lahey clinic in Massachusetts . WE live up in MAINE,but it was well worth the travel time. Sometimes the local guys just arent that good and you need to go elsewhere. There are ways to make a fistula work in many patients with small veins. Dont give up. Search out the vascular surgeons as far as you can away from where you are to find one who can do it.
If you want the name of the guy at Lahey we used , just ask in a post and i will post it.