Fistula matters

[susie q]

Am I nuts??   I had surgery last Aug. for a fistula... it never developed.. despite exercising...
Surgeon wants to try again..  March 20.. eeeek...  I'm chicken.. especially since I know what it will be like... I'm also kinda needle phobic... so that doesn't help...   aaaahhhhh!!!

[kevno]

I know how you feel sussie q,  I have seen 2 Doctors and a professor over my needle phobia. But unlike other phobias we have no chance of advoiding the needles. I hate haemo, was on CAPD for over 12years and felt great. But can not go back to CAPD, so for the last 5years been on haemo. Not to bad when my lines were used. But now that one of the lines is not working as well as it should be. I have to have One needle. Then one Nurse tries to get two in, but up to now she has not been able to.  But I have been advoiding her on the unit getting some other nurse to put me on who I know will only use one needle.


Kevno
There is no such thing as being chicken, when you are a renal patient
maybe a bit unsure

[Bear]

Seriously kevno, I think you'd be a lot better if you learnt to self-cannulate.
Most of us hate being stuck like pigs, but it's a lot better when you're doing
it yourself, as you know where it is, when it hurts, etc.
When I went in for my first 2 nocturnals last week, I was having trouble
cannulating (no blood showing) so I let the senior nurse do it (& she IS good)
- but she had no better luck. I did tell her that if she left nursing, perhaps coal
mining might be a good next job 
- anyway, we wasted 5 cannulas before giving up & going for a sharp (normally
a big NO-no on nocturnal, 'cause of the risk of a blow) & we got away with it
on night#1. I took my own blunts in on night#2 & was fine.
- I had a bit of bother again doing my first at-home one on Sat night, but I got
there in the end...& without a seriously sore arm like the night she dug about
in there!!! 
...feeling pretty stuffed now tho - poor sleep plus change of medication.
Hopefully it'll all settle down 

[kevno]

Hi Bear,

It's nothing to do with the pain.  It's the Flash Back from when I was a Child on the Machine Being Held down, my arm strapped to a board.  Then the last thing they did for me, before I went on the machine was give me Valium!
I was only Ten.  It even goes back further than that when I was six years old on the ward I aways knew when it was my turn for blood taking. TWO NURSES TO HOLD ME DOWN and ONE Doctor to try to get the blood. My fistula is so bad now the nurses have trouble getting one needle in. If the nurse misses with the first attempted I drop my BP. But I have had a vein taken out of me leftarm for a Venus loop fistula.  In my right arm I had a normal fistula. Which I lost the bottom six inches of, about 5 years ago.

I have had all the scans done to see if the doctors can form a new fistula. But my veins are so thin now there is nothing they can do. Not even one in my Leg.

So it looks like one needle in my arm done by the Nurses and one line in my neck, for now. But the line does not last forever.  I have had this one in since October 2003 so it as lasted longer than lines are expected to.


Bloody Needles the bug of nearly all my life!


Kevno

[kitkatz]

Be brave Girl! Buck up!   After all it is only 1 inch needles going into your skin three times a week two spots a day. You can do it!   Yes you can!!!

Now that the sarcasm has been spent, let me tell you about it.  Yes it hurts and it is gonna hurt for awhile.  Your skin is going to toughen up, but the nerves under the skin still get in the way sometimes!  Ouchie.  You let them know when it hurts more than two minutes and have them adjust the needles for you.  The first few times it is gonna hurt like a mother F***. 
I have never used lidocaine.  I have to much fear of more needles.  Why take four when two is just fine for me?  They thought I was brave, no I just did not want more needle sticks.  Some patients use lidocaine all the time.  It is up to what you want.

I am going to yell here. Pardon me.
iT IS UP TO YOU HOW YOU WANT TO BE STUCK WITH THE DAMNED NEEDLES.  YOU TELL THEM WHAT YOU WANT AND DON'T EVER LET THEM BULLSHIT YOU AROUND!

I would also advise finding out who the best stick in the house/unit is and have them stick you the first few times when you are so scared and worried.  Take your drugs before hand and go in and scream about it all you want!!!  Good luck.

Katherine

[susie q]

Had my fistula surgery today... can barely type.. hurts like hell.... whine whine .. Lol..

[Bajanne]

Well, I use lidocaine with all except one of the nurses and now my skin in the area is so tough.  That particular nurse is the one who speaks creole with me and she tells me I have 'lapeau bef' - cowhide!  It would be 'la peau d'un boeuf', for those who speak French.

[hyperlite]

actually i think it would be "la peau d'une vache"...   

[Bajanne]

'vache' would be even a bit more tender.  'Boeuf' says it all - oxhide!!

[Black]

Had my fistula surgery today... can barely type.. hurts like hell.... whine whine .. Lol..

So sorry about the pain   Where did they put it?  How long before stitches out?

[susie q]

My fistula was made in my left wrist area... stitches will be about a week to 10 days..  Hurts like hell.. oh.. i already said that..  ..  This is the second attempt so it better fricken well work this time... 

[anja]

I sure hope it works well for you , SusieQ!  Hope the pain is lessening daily also.  ~Anja

[Black]

My fistula was made in my left wrist area... stitches will be about a week to 10 days..  Hurts like hell.. oh.. i already said that..  ..  This is the second attempt so it better fricken well work this time... 

Hope so too!! Sorry about the pain, hope it's better today.

Hubby's vascular surgeon said he didn't think exercise makes any difference in fistula development.  My husband waited one week after stitches were out and started squeezing the rubber ball again and it appears to be developing nicely.   Has anyone mentioned exercise to you?

[susie q]

Thanks for the well wishes.. the pain is less today, but it bled thru the nite.. I saw it when I got up...  The stitches will come out in about a week or so then I can use the ball to exersize.... The dr. also mentioned a cuff around the upper arm may help also.. we'll see. 

[Black]

...The dr. also mentioned a cuff around the upper arm may help also.. we'll see. 

If you use the cuff be very, very careful.  Listen carefully to the instruction you are given.  Trauma and scarring the veins in the upper arm may make dialysis difficult.  Don't want to make you paranoid but I know that we can't depend on the "medical professionals" for the information we need.

[susie q]

Thanks for the advice... I didn't know that.. 

[fireguy]

Have had two graphs in three years. First one crashed after a surgical procedure. If you rotate sites, should work well. And yes hitting a nerve no fun. doesn't happen often. I use 15 gauge 1inch needles and doing home hemo so I do the needling myself. My wife does one i do the other.1st set of needles were nerve wrecking , dreamt all night of being chased by giant needle.Wife was even worst when she first did it but thats another story. Have not had many problems since. Miss the odd one but no big deal.

[Black]

Have had two graphs in three years. First one crashed after a surgical procedure. If you rotate sites, should work well. And yes hitting a nerve no fun. doesn't happen often. I use 15 gauge 1inch needles and doing home hemo so I do the needling myself. My wife does one i do the other.1st set of needles were nerve wrecking , dreamt all night of beening chased by giant needle.Wife was even worst when she first did it but thats another story. Have not had many problems since. Miss the odd one but no big deal.

Two in three years  doesn't sound like fun.  Have you ever had vein mapping done in your arms or legs to try to find a vein to do a short fistula so you could "buttonhole"?

[fireguy]

Have had arms checked. Have a PTFE graph due to fact that veins are to small for fistula.Graph works very well, lost first one due to low blood pressure during surgery, it clotted and could not be saved.

[susie q]

Well.. it has been almost 2 weeks since my fistula revision ... my wrist is still sore.. stitches still in... coming out on Monday..  how soon should I expect to see the vein getting bigger??

[Epoman]

Well.. it has been almost 2 weeks since my fistula revision ... my wrist is still sore.. stitches still in... coming out on Monday..  how soon should I expect to see the vein getting bigger??

Well that all depends on how much you are exercising your fistula. If I were you I would be squeezing a ball as hard as you can several times a day. It literally can take months for the vein to get bigger, And even then it may not get bigger until it is being used.

- Epoman

[Rerun]

Epoman, do you still squeeze the ball?  I quit after they started using my fistula and I've been wondering if I should still be doing that.  I had problems with my fistula yesterday.  I will NOT put up with access problems.   

[Epoman]

Epoman, do you still squeeze the ball?  I quit after they started using my fistula and I've been wondering if I should still be doing that.  I had problems with my fistula yesterday.  I will NOT put up with access problems.   

Oh HELL no, my fistula already looks like a huge snake crawled under my skin. But you know what I wonder if their are studies out there that show that continued exercise even after a fistula is matured is beneficial, hmm I need to research that.

- Epoman

[Rerun]

Two weeks ago, when the first needle was inserted, it puffed up.  They left it in and just put another one down further.  When I got done there were two lumps.  One went down and now the other one looks like a bullet sticking out of my skin. 

Yesterday, before I went on, the Nurse told me "not to touch it, because it is big and the skin is shinny." he told me to see my Vascular Surgeon ASAP.  Well, they aren't going to have an opening for probably a month!!  I called and left a message because of course they are closed on the weekends.  Tonight my fistula (around it) is swollen.  It may be an infection?? 

I HATE access problems.  If they can't find a way to give us ALL kidneys, the least they could do is find a FREAKING access that WORKS!   

[kevno]

Don't get me onto access problems again. We not let the Nurses use my fistula just now. So they have to use my lines. Which I am having problems with again. Can only get pump speeds of 220. Just now do not really care. Will deal with access problems after I get the other problem sorted out. My fistula is only 26years old.

Kevno