Fistula

[BeachLover]

I have to have mine next month. I have put it off as long as I could possibley. I am still so scared.
Do you feel this thing in your arm all the time? I mean are you aware it's there? Does it hum or throb? I wanted the doc toput it in my lower arm but he says upper left is best. I hate the idea of it being so close to my ear when I sleep.
I am also afraid that my arm or my hand will feel numb or the circulation will become screwy.
I am just plain terrified. Then dialysis is the next step. They took blood out of my arm last week and I have a huge black bruise. Is my whole dialysis arm going to be this way?
I think I would rather be shot than have this done. Please help me understand it better.
Thanks

[BeachLover]

Did I ask the wrong questions or doI just appear too negative?
27 people have clicked on and not one answer.
I't just that I am so scared. I need help. Thanks

[willowtreewren]

Hi, BeachLover.

I am not a dialysis patient. My husband is. He got his fistula nearly 2 years ago in preparation for going on dialysis. He started dialysis about a year ago.

Being nervous is certainly normal. Read through the posts on IHD for more information.

The location of your fistula depends on what will be best for you as an individual. My husband's is in his lower right arm (he is left handed). His sister's is in her upper right arm (she is right handed.) She likes hers there and can cannulate herself (except for when her left arm and collar bone were broken!). I cannulate my husband. they are both doing NxStage at home HD.

My husband can hear his fistula if he puts his arm up next to his ear at night. I find the feel of it very reassuring. The students in my husband's class like to feel his fistula thrilling.

At the very beginning of dialysis my husband was infiltrated a couple of times (the needle going through the fistula). That causes bruising (and is pretty uncomfortable, too). Since we have been home doing dialysis, I have been very careful with his fistula and we have had no problems. If you are worried about the needles hurting, you can ask for Emla cream to numb your access. There have been times that my husband has forgotten to use it and rather than waste additional time we have gone ahead with dialysis. It doesn't bother him very much. Some folks never use Emla cream.

We are VERY thankful for dialysis. It keeps my husband alive and part of the great throng of humanity. I hope that learning more about your dialysis journey will help you feel less fearful.

Best wishes,
Aleta

[dwcrawford]

I've only had mine for 3 weeks so I don't know all the answers.  I'd rather have it in the upper arm but mine went right at the bend of my arms.  I chose to be "knocked out".  I woke with not pain whatever (including a temporary catheter) and never had a pain pill or sleeping pilll.  You cannot hear it.  You have to feel and even that is hard to do at this point.  I don't think it  will be pretty though it doesn't look bad now.  I hear it gets a lot bigger.  Everyone at the center says it is the b est way to go.  Catherters are more prone to infection.  Sorry  I can't answer all your questions.  Maybe in a couple of weeks I will no more.

Dan

[Rerun]

Fear of the unknown is very real.  So, what you are feeling is normal.

You will not feel it unless you put your hand over it to check it.  YOU SHOULD feel a thrill or buzz and you need to check it 3 times a day. 

Never sleep on that arm.  If you slow down circulation or cut it off... it may clot off and then you are back in outpatient for an emergency de-clot. 

Do not wear tight sleeves.

Yes upper arm is better than lower arm.  If you are vein or just get sick of people asking "what in the hell happened to your arm" then upper arm is better consealed.

Makes sure you know the difference between a graft and a fistula.  A graft is a man-made vein and a fistula is using your own vein and artery.  Squeeze a soft ball to mature your fistula.  This does no good with a graft.

Look, you have chosen to live, and to do so you need a dialysis access.  Just do it.

Hope this helps.   

[dwcrawford]

I cannot feel the buzzing.  I don't check it 3 times a day even though I should.  I ask the nurses to check it and any friends that stop by.  My good friend just left.  He said it is funny.  ha ha ha...I hope is ir mature soon.  I hate these tubes hanging out my chest.  Talk about vanity... The cather under my shirt looks like I've just had a breast implant and they forgot to do the right side...
Dan

[kellyt]

That's strange that you can't feel the buzz, dw.  But I guess your doctor would tell you if something is wrong.  It would make me nervous if I couldn't feel it.  But if others can, have them check for you.  It's a must! 

My 1st fistula I couldn't feel anything (from day 1) and apparently it wasn't working.  So 2nd fistula was placed roughly 30 days later.  I could definitely feel/hear that one.  I told my nephew there was a bee in my arm.  He thought that was really cool. 

I hope you have minimal problems with your fistula placement.  I found this site just weeks before I got my fistula and was totally ignorant as to what to expect.  By the time I got my fistula I had lots of information thanks to the veterans at IHD.

Good Luck!  We're here for you if you need us - before and after!   

[dwcrawford]

I  think it may be neuropathy in my finger tips... my friend felt it this after noon and got a big kick out of.  He described is for me.  So I'm sure it is working.

[Pam]

I'm new to all of this too. And I was terrified! The more you learn the better it will be. Tomorrow is my 4th treatment and so far other than a terrible headache on day 2 the worst thing has been having to get up and be there at 6:30 am! I can feel the thrill and some times hear it. At least that tells it's working. The bruising is another thing! It looks awful. My fistula is  Right at my elbow. Even t shirts don't cover it. I went to Wal-Mart and they had 2 racks of clearance. Elbow length and 3/4 length sleeves. I got one in every style and color. Now it's not noticeable at all.   

[kellyt]

Neuropathy would explain why you couldn't feel it.  Sorry to hear that.  As long as you have someone to check it that's great!  It is a really strange feeling.  But I could only feel mine with my right hand or if I laid my head on my arm.  I couldn't feel it if I pressed my arm against my leg.  I thought that was strange.  Also, if I laid my arm across my husband's chest he couldn't feel it.  Why is that do you think?  It can only be felt by your hand or ear?   

[hurlock1]

It hurts for a few days.  Nothing more than getting socked and left with a bruise. During dialysis, my hand does kinds go numb, but I flex my fingers and it goes away. Some of the people in the unit have these big ugly morphed sausage looking things where their fistula is, their fistula. I guess that I'm vein. It looks gross. I look like a 60yo frog, so I guess it won't matter wether mine ends looking like that anyway. It hurts to get stuck unless you use emla cream. Ask about it.

[Stoday]

I caan't wait to get mine.

My fear is that if it's left too late I'll have to have both a fistula and a catheta.

[jbeany]

Beachlover - I do feel mine humming when I'm laying in bed, about to drift off.  It isn't really loud or annoying - just weird to feel at first.  You get used to it quickly.  My cat loves mine - she lays her head on it and purrs right back at me.  You may end up with "Steal Syndrome" - where the circulation to the rest of your arm decreases because to the fistula rerouting blood.  My hand was cold all the time for the first year or so, and I couldn't hold my hand over my head for very long.  The rest of the vessels in my arm have adapted, though, and I don't really notice it anymore.  I started lifting little hand weights, and the exercise made a real difference for me.
You may be bruised - maybe not.  If you have decent nurses and techs at your dialysis center, the bruising should be pretty rare.  I've got an upper arm graft.  My veins in my lower arm were too small to be of use.  I don't mind - short sleeves cover the scar if I'm not in the mood to answer questions, and I can move pretty freely while I'm on the machine.

This is all very scary at the start.  It's okay to feel overwhelmed - we've all been there.  Read as much as you can on here - knowing what's coming makes it easier to deal with it.
 

[hurlock1]

I caan't wait to get mine.

My fear is that if it's left too late I'll have to have both a fistula and a catheta.

You will for a time have both. They will use the Cather while the fistula "matures". The cathetor hur worse than the fistula.

[dwcrawford]

I understand that putting the needles in the fistala will hurt like "ouch"!  There is not pain using the cather but it is awkward to live with all the rest of the time.  I have a couple of months to go before fistala matures.  As far as having them put in, I had no  pain with either.  My big problem is bathing...  If the cath isn't removed soon I'll have no friends at all...smelly.

[jbeany]

I caan't wait to get mine.

My fear is that if it's left too late I'll have to have both a fistula and a catheta.

You will for a time have both. They will use the Cather while the fistula "matures". The cathetor hur worse than the fistula.

Depends on how early you get the fistula.  I've never had one and I've been on D over 2 years.  My graft was placed almost a year before my function dropped enough that I needed to start.